Immune System Disorders transcript - 0960-AF33 - Revised Medical Criteria for Evaluating Immune System Disorders

1 Immune System Disorders in the Disability Programs SOCIAL SECURITY ADMINISTRATION POLICY CONFERENCE February 19, 2004 San Francisco, CA Audio Associates (301) 577-5882 Audio Associates (301) 577-5882 I N D E X SSA Policy Conference Immune System Disorders in the Disability Programs February 19, 2003 Welcome, Opening Remarks and Purpose Overview of the Disability Programs Sue Roecker, Associate Commissioner for Disability Programs Overview of the Disability Process for Adults and Children - How We Use Listings Barry Eigen, Executive Program Policy Officer Summary of Major Themes from the Philadelphia Conference Donna Sue Bongardt, Executive Assistant To Martin Gerry, Deputy Commissioner for Disability and Income Security Programs Nancy Schoenberg, Special Assistant to the Office of the Deputy Commissioner for Disability and Income Security Programs Session One Topic: Immune Systems Listings (except HIV) Virginia Ladd, American Autoimmune Related Diseases Association Sarah Patterson, National Organization of Social Security Claimant Representatives Leslie Holsinger, Ph.D., National Psoriasis Foundation Michelle Vogel, Immune Deficiency Foundation Duane Peters, Lupus Foundation of America, Inc. Steven Taylor, Sjogren‟s Syndrome Foundation Joan Wong & Meghan Elizondo, Arthritis Foundation Session Two: Questions for the Audience Moderator by Susan Lauritzen, MD SF Regional Office Medical Consultant Closing Remarks Sue Roecker, Association Commissioner for Disability Programs KEYNOTE: “---” denotes inaudible in the transcript. “*” denotes word was phonetically spelled. 4 15 32 42 56 84 89 102 129 140 176 235 Audio Associates (301) 577-5882 P A R T I C I P A N T S Virginia Ladd Leslie Holsinger Sarah Patterson Michelle Vogel Steven Taylor Duane Peters Sue Roecker Barry Eigen Donna Sue Bongardt Nancy Schoenberg Sandra Moore Susan Lauritzen Stephen Raffanti Martin Gerry Glenn Sklar Lana Minnigerode David Hatfield William Hatfield William Leach Meghan Elizondo Joan Wong Dale Weatherford Michael Heitz Bonnie Doak Audio Associates (301) 577-5882 Audio Associates (301) 577-5882 P R O C E E D I N G S (8:30 a.m.) Welcome, Opening Remarks and Purpose Overview of the Disability Programs by Sue Roecker MS. ROBIDART: Patty Robidart. Good morning. My name is I‟m the Deputy Regional Commissioner of Social Security here in the San Francisco region, and I‟d like to welcome you today to the conference that is being sponsored by Social Security. We have with us today people from our regional offices in Richmond, people from our central offices in Baltimore, and then those of you who have actually commented on medical listings as they apply the immune systems. We‟re looking forward to your comments. We‟re looking forward to, you know, continued discussions of your recommendations for change as was requested by the Agency some months ago. your time. Moore. I‟m not going to take much more of I do want to introduce you though to -- Sandra Dah, good morning to Sandra Moore who is our facilitator this morning and to Susan Lauritzen who will be our facilitator this afternoon. Also I‟d like to introduce Sue Roecker is our opening speaker. Sue has many, many years with Social It‟s her Security in the disability world and in policy. staff who will actually be looking at the listings and Audio Associates (301) 577-5882 determining what updates are necessary based on your considered comments and input. MS. ROECKER: you for coming. Sue. Good morning again and thank Anybody who was here yesterday you‟re going to be bored in the next 30 or 45 minutes because Barry and I are going to do essentially what we did yesterday. probably won‟t say exactly the same things. But we You can catch us if we say something differently that is not correct. You all should have binders that you got when you checked in outside. binder. The agenda for today is in the The presentations that we There are There is also material. got ahead of time are printed in your binder. some presentations that didn‟t get in in time, and for those I believe we‟re getting those electronically, and anybody would like them we can send them out to you by email after the conference. There‟s also some material in there related to the advance notice of proposed ruling, and that‟s the last tab, and then the current immune listings are also in the last tab of the binder. There is after the page of the agenda for today Attachment B has seven questions in it that we‟re going to go over later this afternoon in the discussion period. So if you haven‟t looked at those you Those were the might some time glance at them this morning. kinds of things that we‟re very interested in hearing from you about. So if you have anything to comment on those you Audio Associates (301) 577-5882 might be thinking about that over the next few hours. Okay. Ready? I‟m going to give you just a quick overview of the disability program, Social Security programs, and most of you probably know a whole lot about our programs. You interact with SSA all the time. But we thought be a few of you who didn‟t know some of the lingo, some of the processes, and just for the sake of those that wouldn‟t we didn‟t want to presume that you were totally knowledgeable and that you would get lost later in the day if some of this lingo started coming out. So I‟m going to talk a little bit about the programs, and then Barry Eigen who is the Executive Program Policy Officer in the Office of Disability Programs is going to talk about how we use the listings and a little bit about the actual adjudication of disability claims and so forth. So we are here to get your input. We have So written comments from I think most of if not all of you. we had some questions about those comments. We also wanted to hear more about those comments, and we thought this kind of a setting and a dialog would be best to do that. We had a meeting in Philadelphia, and I see some familiar faces. So thank you folks for coming to both conferences. But we found that this was very, very helpful in understanding your comments and clarifying what might have been apparent discrepancies or conflicts among the different comments that Audio Associates (301) 577-5882 we got, and also trying to figure out we put some of this together. helpful. So the meeting in Philadelphia was extremely We are also doing this kind of outreach with the mental listings, and we had a meeting in Washington, DC on that, and that again I thought we all felt was very productive. So today we‟re focusing on non-HIV. Yesterday we focused on HIV, and I think some of us as we got here thought "How are we going to spend a whole day on HIV and whole day on something else?" Because in Philadelphia we mooshed it all together -- and that‟s mooshed with two O‟s. (Laughter.) MS. ROECKER: We mooshed it all together and we did it in one day, but we certainly I think did not have any long periods of silence yesterday. with -(Laughter.) MS. ROECKER: -- lots of discussion and I It was a day full think we‟ll have the same today, so we‟re looking forward to it. We are doing this with other listings, with other parts of our policy. So for those of you who think maybe we‟re just picking on the immune system or we‟re picking on HIV, this is part of our whole effort to update all of our policy Audio Associates (301) 577-5882 rules, all of the listings, and we are working on a number of other listings. Last year we actually published a new rule on polio, we did a final regulation on ALC putting that in the listing, and then of course we did the advance notice of proposed rule making on both the immune system and mental. For those of you, and this is very, very elementary I know, there are actually two disability programs that we administer. The rules that we‟re going to talk about, the policy rules in terms of the medication adjudication, are the same and are applied equally to both programs, but there are some differences. We actually administer the Title 2 program, which is the Social Security Disability Insurance program, SSDI, as well as the Title 16 program, that‟s the Supplemental Security Income program. Title 2 disability is for workers, people who have worked and paid into the system, and disabled widows or widowers and disabled adult children of those workers; and SSI has a program for both disabled adults and disabled children. What are the other differences between the two? And there are some. SDDI, the Social Security component, of course is based on contributions as well as some other employer funds, and SSI is from general revenues. It‟s a needs-based program. With SSDI there is a five-month So from the waiting period before benefits would start. Audio Associates (301) 577-5882 date of the onset until your benefits there would be five months without benefits payable. SSI, again being needs- based, the payments begin immediately based on if you‟re eligible based on that date of application and onset. SSDI we have no provision for presumptive disability or immediate payment, whereas with SSI again being a needsbased program there is a component that says if we have certain information, and usually it‟s not a whole lot, on which we can base a presumptive eligibility we can do that and begin payment while we finish the adjudication. SSDI For again because it‟s an earned benefit there is retroactive for up to 12 months. SSI there is no retroactively. You cannot get benefits before the date of your application. There is no separate program in SSDI for minor children, whereas in SSI there is an SSI childhood component for folks who are under 18. SSDI after 24 months, with just a couple of exceptions, leads to eligibility for Medicare coverage, and in SSI eligibility or entitlement to SSI is the gateway to medical assistance and Medicaid. We pulled some numbers, and this just relates to the HIV and then other immune system numbers, and these are the number of people currently getting benefits, and these get -- with these kinds of disorders. the SSDI, HIV is a little over 70,000. Title 2, that‟s All other immune system disorders in Title 2 is about 177,000 people Audio Associates (301) 577-5882 currently getting benefits. For SSI, Title 16, HIV is about Now that 45,000 and for other immune it‟s about 61,000. little note that says counts may be higher or over, may contain concurrently entitled, that means some people get both, are in entitled to both because their Title 2 benefit is low, lower than the Title 16 amount. both benefits. They in effect get So there is some double counting of people in these numbers. The disability process is -- can be somewhat confusing, and there are a number of steps to it and there are a lot of components; but it really is a unique federalstate partnership, and the states play a very vital role in the disability determination process. The actual applications are taken by federal employees in our local field offices, but then the states have components called disability determination services, a kind of generic term that we use for those units, and they actually do both the initial and the reconsideration determinations. At the federal level at intake or at the beginning of the process we have an application and we have various forms, and any of you who deal with our claimants know about those forms, and they are pretty lengthy, the disability report and so forth. We asked about sources of evidence, treating sources, doctors, hospitals, et cetera, what are the impairments, a description of the impairments, Audio Associates (301) 577-5882 the effects of the impairments, what does this mean in terms of functioning and any other symptoms, as well as some work history so that what are the major jobs that people have held are. We also have to get signed medical releases so that we can go and request copies of medical records from all the treating sources, and then there is also an initial of substantial gainful activity that is handled at that first level. But then once all that intake is over and we have all that information it is then sent to the DDS, and the DDS, the bulk of their activity really because it is time consuming, is trying to obtain medical records. And they request them from all the treating sources that are relevant and have been identified, and then if necessary they will purchase a consultive exam is there is a piece of information that they don‟t have from the records. Then they will make the determination, and this is a team effort with a medical consultant and a disability examiner. your packets there is a -- this is an old slide. In So on this slide if you‟re looking at it the very last items says refers cases for vocational rehabilitation. That‟s no Now we longer accurate, so just, you know, line that out. have ticket programs and some other things and that‟s not exactly what happens. But if there is a denial then there is an Audio Associates (301) 577-5882 appeals process after that initial determination, and the first level of appeal is the reconsideration. That case goes back to the DDS for another look, and they do pretty much a paper review, but they do collect additional information and evidence if there is some additional medical evidence that wasn‟t in the file for the initial determination. If that is denied and if it‟s appealed the next level of appeal is a de novo hearing before an administrative law judge, and then the final level of administrative appeal is a request for review by the Appeals Council, and that‟s an SSA component. After that you‟ve exhausted your administrative appeals and you‟re probably exhausted, too, but after that you can appeal to Federal Court and of course then it‟s the District Court first, and so forth. So it is a cumbersome, a long process if you go through all the appeals, but they do offer folks an avenue for continuing to pursue their claim. So that‟s kind of the process in a nutshell, and a very small nutshell. If you have any questions about Just in case you hear that we‟ll be glad to answer to them. some of these terms, and I know we have folks here from both the -- some of our DDSs and we do have some administrative law judges here and appeals judges here. So we tried to represent our process as well as getting input from them. Audio Associates (301) 577-5882 In terms of the rule making, there are certain steps that we have to follow and that we are following. We did publish for these. For both the immune system and the mental system we published what‟s called an advance of notice of proposed rule making, and the advantage is that it provided us an opportunity to have these kinds of meetings and discussions without the restrictions of an official rule making process when that kicks in. So we can have these kinds of discussions, you can send us comments, we can talk to you about those comments before we actually start writing the notice of proposed rule making. this has been very beneficial for us. We think It takes a little bit longer to do it this way because, you know, you‟re adding steps and time, but again that‟s where we are in this. after getting the comments we‟ve had as I said the conferences, and we‟ll go back after we get this input and start figuring out what we want to put into the notice of proposed rule making, what are the areas, pieces of the listings that we need to change. We need to update because, Then you know, there‟s some changes in medical science, some things that perhaps we want to add to it, some things we might take out of the listings, but we‟re taking all the comments and some other information that we certainly have from actual experience in using these rules, and then we drafted the PRM. There will be another comment period. Audio Associates (301) 577-5882 This is a formal public comment period. We get those comments and then consider them, and then we draft the final rule, and that goes through the clearance process. Then once it‟s published as a final rule then that becomes the policy. We do have a website for comments that we use for the ANPRMs and will continue to use this as the rule making continues. If you haven‟t been to the website you All the comments are posted So if you haven‟t seen might want to check it out. there I understand from the ANPRM. others, the comments that others submitted, you can do so at the website. And for anybody, this the commercial part of it, I just want to talk about the SSA website. For anybody who wants information about SSA‟s programs and so forth most likely you can find it on the website, and here‟s URL, the socialsecurity.gov. In terms of disability this is a screen There‟s a lot shot of the homepage for disability programs. of general information there, and as I said most likely if you a question you can find the information here. You can also file online for Title 2 disability benefits, and you can complete those difficulty reports, the 3368, 3820, et cetera, online. like. So here‟s a screen shot of what that looks All the rules and regulations are available online, so here‟s the screen shot of that, and finally we have a Audio Associates (301) 577-5882 work site that provides a lot of information about the working incentive programs, Ticket to Work, et cetera, for anybody who is interested in learning more about that. I think that‟s the end of the commercial. Are there any questions about the process? very quick. Okay. I know that was So Barry is now going to really confuse you and talk about the sequential evaluation process and how we use listings and so forth. Overview of the Disability Process for Adults and Children How We Use Listings by Barry Eigen MR. EIGEN: If you were having trouble sleeping last night you‟re in luck. (Laughter.) MR. EIGEN: So the first thing I have to ask, I ask this at every talk, but it may be especially relevant in this talk. Is there anybody here who has trouble seeing Because if the slides or with reading them in your books? you do I‟ll make sure that I say what‟s on the slides. Okay. As you know, my name is Barry Eigen. I‟m kind of the chief policy wonk for the Office of Disability Programs. We‟re the people who write all of the various Audio Associates (301) 577-5882 rules and instructions that disability adjudicators use when they decide whether a person is disabled. The rules include things like regulations, which we‟re going to talk about today quite a bit, and also various other kinds of documents. For example, we may talk about another kind of policy document called a Social Security ruling, which is binding on all of our adjudicators but not necessarily on people outside of the agency, for example, the courts, the way regulations are. Okay. So let‟s start with the first slide. What I‟d like to do today is give -- make sure we‟re all on the same page for the discussions we‟re going to have throughout the day. Basically we‟re here to listen to you, but the idea is that we should be oriented and understand what the listing is, how to use listings, and I want you to also remember -- I‟m going to say this over and over -- that the listings are not the end of our way of determining disability. is disabled. They‟re just one way of finding that a person People who don‟t have impairments in our listings can still be found disabled in other ways which I‟ll explain later. The other thing I‟d like you take away from this, from this short talk, is a sense of what people like Sue and some of the staff here and I have to think about as bureaucrats -- I‟m saying this, bureaucrats, in a nice way by the way -- bureaucrats who have to write rules Audio Associates (301) 577-5882 that are understandable, up to date, that will endure at least for a long enough time that it‟s worth the effort to revise them, at least last for a few years, which in the field of medicine and particularly for these kinds of impairments changes rapidly as everybody in this room knows. So as you‟re thinking of suggestions for us I hope you‟ll try to also but yourself in our shoes and say to yourself, "Well, what do they do that would useful --." already said all those things. technical stuff. This is also a civics lesson. You probably Well, I‟ve So let‟s move on to the remember from high school that Congress makes the laws and the President signs them, so I have a picture of the Capital building, the legislature there. This is the definition of disability in the statute, and there are three important things to notice about it. The first thing is that it‟s a very severe standard based on essentially an inability to function, an inability to do substantial gainful activity, which is a fancy way of saying work, and I‟ll tell you more about what it means. But it‟s a very strict standard. It The uses the word "any", any substantial gainful activity. second thing to notice about it is that the primary basis for the disability has to a medical impairment, a physical or mental medical impairment; and furthermore the impairment must be medically determinable, and the statute and our Audio Associates (301) 577-5882 regulations tell us that medically determinable means that the impairment has to be shown -- when I use the word "impairment" by the way, in our lingo that just means condition. That the medical condition has to be shown by signs, symptoms, and laboratory findings, and furthermore the statute specifies that we can never establish a disability based on symptoms alone. I think. That‟s worth repeating We can never establish a disability based on That‟s in the law. Then the third thing to symptoms alone. notice about this definition is that it contains what we call a duration requirement. It‟s not enough to be unable The impairment has to to work because of this impairment. have lasted or be expected to last for at least 12 months or to result in death. Next slide please. Now the law doesn‟t say a lot more about what we should be doing, but it does say a little more and what it says is very important. The very next paragraph in the law explains that a person can be disabled only if -- it says his, but I‟ll say his or her, medically interminable impairment is so severe -- and I have that bolded because it will show up in our regulations later -- that it not only prevents the person from doing previous work, but also any other kind of work. a little confusion. But then it also says something that‟s It says but we also have to consider We have to not just the person‟s medical condition. Audio Associates (301) 577-5882 consider the person‟s age, education, and work experience. So what it means in practical terms is that if it was possible to have a person -- say a person who was 22 years old and a person who is 62 years old and they have exactly the same medical impairment which hypothetically has exactly the same functional effects on the people. It‟s possible under this definition in the law that the 22-year-old would not be disabled but the 62-year-old would because of complicated rules we have to implement this. Now you‟ll also notice that I put in little dots at the end, little ellipses. That‟s because the law goes on also to say -- and this is not the slide -- that when we talk about whether a person can do any other work it says it doesn‟t matter whether there were job openings in that work, it doesn‟t matter whether the person would be hired for those jobs, and it doesn‟t matter whether the jobs exist near where the person lives. The reason it says that is that Congress was explaining that the issue here is not whether the person can get a job. All these words on the first two slides just describe a way of defining of level of severity of disability. to work. It‟s not that the person should go It‟s just saying if you had this job could you do it so we can describe how severe the disability is. Okay. So that‟s the statute, and then the So the statute says, well, that‟s not a lot of detail. Audio Associates (301) 577-5882 Commissioner in the executive branch -- so there‟s a picture of the White House -- has the authority to write long rules explaining how she‟s going to implement the statute. This is how we do it. It comes from a big book What like that which has all of our regulations in it. doctors would call this, and in fact a doctor did use this word yesterday, is a matter of fact an algorithm. does is it follows the words of the statutes. What it SGA meaning substantial gainful activity; PRW means past relevant work. So that‟s a reference to a person‟s previous work. What you do is you start at the first step, and if you can make a decision you stop, and if you can‟t you go on to the next step, and if you can make a decision you stop; and so on and so on and so on until you get the end. The idea is it‟s an administrative efficiency for us so that we don‟t have to consider everything about a person in every case. We don‟t have to consider age, education, and work experience for example in every case because in may cases it‟s unnecessary. For example -- why don‟t we just go on to the next slide. For example, the very first line in the definition for disability says you have to be unable to engage in substantial gainful activity. So the first step in our sequential evaluation process says "Are you engaging in substantial gainful activity?" because if you are you‟re obviously able to, and so we say it doesn‟t matter how Audio Associates (301) 577-5882 serious your medical impairment is. If you‟re doing SGA you can‟t possibly -- it doesn‟t matter whether we consider all the other things in the definition of disability because you can‟t be found disabled. Most of you probably know that SGA It changes is basically a monetary test, an earnings test. from year to year, and this year it‟s $810 per month for a person who isn‟t blind; and by statute there‟s a higher amount for statutorily blind, and this year that‟s $1,350 a month. Most people who come to us are not engaging in substantial gainful activity, so most people we start with the second step, or we move onto the second step I should say, where we consider two things. First of all, does the person have a medical impairment, and as I mentioned that means a person has to show signs, symptoms, and laboratory findings showing us that they have something. Again, we can‟t base it on symptoms alone. The other thing we ask at this step is whether the impairment is severe, and the reason I have the word "severe" is quotes is that in our program the word "severe" doesn‟t the same thing you might think it means just walking around on the street using it. In fact, our term severe is not a very severe standard. It‟s in fact a low hurdle as the little picture shows. just means that you have more than a slight or minimal impact on your ability to do a basic work activity. Audio Associates (301) 577-5882 So most It people who come to us are not only not engaging in substantial gainful activity, but they also medical impairments and usually they‟re severe. Very few people have -- relatively few people, have non-severe impairments. So we call that step, by the way, a screen step just in our -- internally. We talk about these three steps as being screening steps because they‟re ways of quickly deciding cases. over. If a person is working the case is It a person doesn‟t have an impairment, it‟s not The third step is also a It says is a severe, the case is over. screening step, but it‟s the opposite of it. person‟s impairment so severe that there‟s no point in going on because we will definitely find this person disabled. there‟s no point in considering age, education, and work experience, 22, 62, it doesn‟t matter. disabled. The person will be So That‟s what the listings are, and that‟s what we‟re going to spend the most time on. Okay. Now, listings -- I have no idea. I‟m holding my notes like I‟m looking at them, but -- anyway the listings are an appendix. I‟ve already held up this book. This is called the "Code of Federal Regulations" and this book has most of Social Security‟s rules in it. In one of the chapters in this book there is an appendix, and the appendix includes this listing of impairment. What it is, it‟s many, many pages divided up by body systems the way you Audio Associates (301) 577-5882 learn about them in high school -- cardiovascular, musculoskeletal, we have mental, and as you know we have an immune system -- and within those body system we have specific rules that describe particular medical conditions or kinds of medical conditions -- they‟re not always specific diagnoses -- with particular medical findings, and sometimes also with particular functional findings. have exactly what‟s in that rule you‟re disabled. that you have an impairment that meets a listing. If you want to see what listings look like look in the back tab of your books. You should have copies Each one will start You should do If you We say of the listings for the immune system. with 14.00 and one will start with 114.00. this anyway, by the way, because I‟m going to talk about how the listings are constructed in a second. That‟s what the immune body system looks like; and if you found the handout, if you look about halfway through the handout -- taking either one. It doesn‟t matter whether it‟s 14.00 or 114.00. You‟ll see that it starts with a lot of dense text with paragraphs and paragraphs and paragraphs. But about halfway through you‟ll reach a point where it looks more like an outline, and the numbers will start going up after the decimal point. It will be like 14.02 or 114.02. Those are the actual listings. Those are the rules that show whether The only you have an impairment that meets the listing. Audio Associates (301) 577-5882 other thing to point out, again this will be the second time, is that we use listings only to allow people. When a person does not have an impairment that meets a listing we just go on in the sequence, and I‟ll remind you of that again. Okay. Next slide please. These are the names of the body systems in the listings, and as you can see we divide the listings into two parts; one for adults, which we define as people who are at least 18 years old, and the other the children, which is everybody else. You should know sometimes we can use the adult listings for children, but never the other way around. We can never use the child listings for adults. Okay? This slide just illustrates that the immune system under our rules is actually a relatively recent rule. It‟s unusual for our rules to be as young as 10 years old believe it or not, but one of the ways you can tell that it‟s a more recent rule is that if you compare it with other body systems it‟s a much longer body system because we put in more and more detail as we revise our listing. way, there‟s a typo on this slide. By the We actually starting We using the inflammatory arthritis rules in 2002. published them in 2001. So that‟s a typo. That‟s all I want to say about that slide. Okay. Now if you‟re still looking at your listings if you just look through the dense paragraphs while Audio Associates (301) 577-5882 I‟m talking -- in fact you can even stop listening to me -if you haven‟t already. (Laughter.) MR. EIGEN: The first part includes information about how to apply the listings and also how to evaluate disability with people who have the kinds of disorder, and then when you get to that part that looks more like an outline you have the actual listing disorder. So everything from the second line down describes the various listings. So for example systemic Lupus is listing 14.02. The next one down is 14.03 and so on until you get to 14.09 or 114.09. The immunity disorders is for disorders of cell- mediated immunity apart from HIV, as you probably would have figured out anyway. I think you‟ll be especially interested, I was reading your comments last night, and I think you‟ll all be especially interested in this introductory text, particularly the (B) paragraph. On your handout the (B) paragraph is actually about a three- or four-page paragraph, and it starts as the second paragraph on the first page, but then it goes on and on and on. The reason it does that is because we tried in this particular body system to define and describe various specific impairments of the immune system that people might have, the various disorders there in the listings. Here‟s a think to think about today as you Audio Associates (301) 577-5882 put yourself in our shoes. Even though these listings are barely 11 years old some of your comments pointed out that some of these descriptions are already out of day. comments pointed out that they‟re incomplete. about that would be very helpful to us. Okay. Other So advice Next slide. Also if you look at the listings, the parts that start with 14.02, to you it might not appear unusual, but to me, a person who is used to looking at listings, you can see -- I can see that these listings are not like many other listings. Many other listings in our book list impairments, say diabetes, and then they say you‟re disabled if you have diabetes "and," and give, for example, episodes of --- acidosis or something like that. Most of the They say listings we‟re talking about today don‟t do that. you have X -- systemic Lupus. I‟ll keep referring to the first one -- and it causes a problem that meets a listings in another body system. It doesn‟t say anything especially So one of the things I hope we specific to the impairment. talk about and think about today is is that a good way to have listings for these kinds of disorders. The other thing you‟ll notice about the listings in this body system is they do try to have an alternative criterion, but it‟s not very specific. It talks about having a moderate affect in an organ, which I‟m not even sure what it means to tell you the truth and I‟m one of the guys who writes the rules. Audio Associates (301) 577-5882 So that would be something talk about. In a sense it‟s different, and you can tell how we improve as we issue newer and newer regs because if you compare the first few, the 14.02 through 14.07, with 14.09, which is the one for inflammatory arthritis, that‟s a much newer listing. we published it in 2001. specific information. Remember I told you That listing has more disease- It has an array of criteria that describe affects in various joints and the spine of varying severity. So that might be a thing to compare with the The slide preceding listings as we talk about what to do. does point out that there are some impairment-specific criteria within the early listings in this body system, but if you just take a quick look you‟ll that there aren‟t very many. I just gave you a couple of examples, but that‟s almost all the examples there are. Okay. All right. So we‟re done with the listings for now, and we‟ll just -- how am I doing on time? Who is my timer? I‟m fine? Okay. Just to close out, I mean, this is all very complicated of course; and in case you haven‟t noticed I could probably talk about this for the next five hours, but I‟m just going to quickly close out the sequential evaluation process. Now remember if you‟re engaging in substantial gainful activity you‟re not disabled. If you‟re not you go to the second step which asks do you have a medically-determinable and impairment and Audio Associates (301) 577-5882 is it severe. If you don‟t, you‟re not disabled. If you do, we go to the next step where we say is your impairment so serious that we‟re just going to presume that you‟re disabled. That‟s where we talk about meeting the listing, but also say we couldn‟t possibly list every impairment a person could possibly have in this appendix; and furthermore some people have impairments that are listed but they‟re not as bad, but they have a bunch of impairments. They have two, four, five impairments that maybe together are just as bad as the impairments that are in the listings. So we have a policy that allows people to qualify under the listings even when their impairments don‟t meet exactly what the listings say called medical equivalents. going to say about that today. That‟s all I‟m I just want you to understand that that‟s one of the things that we‟re -- okay. So if you have an impairment that meets medically equals a listing you‟re disabled and we stop. if you don‟t, are you not disabled? you are not not disabled. This is for you. But No, We have to go on to steps four Remember, the and five to find out whether you‟re disabled. point about the listings is they presume that everybody who has what‟s in the listing will qualify as disabled under our rules. So we don‟t consider a person‟s age, education, and As a matter of fact, the listings are work experience. based on a stricter standard of disability than is necessary Audio Associates (301) 577-5882 to show disability under the statute. In fact, what we say is the listings describe an inability to do any gainful activity, which is not the same thing as any substantial gainful activity. Okay? So when we get the past listings the first thing we do is we say, "Well, we already know you have a severe physical or mental impairment. your ability to work?" How does it affect And we do that by assessing what we It‟s supposed to be call residual functional capacity, RFC. what you‟re able to do on a sustained basis in a work situation physically and mentally, everything you think of, and we use that assessment first of all to decide can you do your previous work as the law requires. We have a rule that‟s called past relevant work, but we don‟t have time to go into all that now, and it‟s probably not important to today‟s discussion, but if I‟m wrong we can talk about it later. Anyway, obviously if you can still do your previous work you can‟t be disabled because the law says you have to not be able to do your previous work. stop. In that case we would But if you can‟t do your previous work, or as often happens in SSI you don‟t have any previous work, we go on to the last step; and the last step is the full-blown definition of disability that considers a person‟s age, education, work experience, their RFC, their residual functional capacity. It‟s a very complicated step. Audio Associates (301) 577-5882 We used another appendix in this book. Many of you have probably We have rules that heard us throw out the words --- rules. we use either to direct decisions or as framework for decision making, but we have to determine whether there is other work that exists in the national economy that you could do basically, that you can make an adjustment to. Is there anything else here? Okay. So I‟m done with the dry part of the lecture, and so I was thinking as I was reading the comments, "What are the kinds of questions I would ask myself if I were you trying to give us advice?" Obviously there‟s some overlap here. Some of these things mean the same thing, but these are the kinds of questions I would ask. complete? Are they up to date? Are they Are they correctly identifying people who should Are they incorrectly identifying people who Because that‟s something we have to be qualifying? should be qualifying? worry about, too. adding? Are there are other criteria we should be Many people suggested that in their comments, so But anyway I won‟t read all So now I‟m I‟m sure we‟ll talk about that. these, but that‟s the point of these questions. done. If you have any questions for me or for Sue I‟ll be glad to take them. MR. PETERS: Two questions. I know you probably can‟t answer this, but just maybe as a point of an issue. You had mentioned the fact that the law makes no Audio Associates (301) 577-5882 distinction as to whether or not the job is available in the area in which you live. However what if -- and maybe this a hypothetical situation, but I‟m thinking of people with Lupus who have severe joint pain and so forth. If the only job that‟s available -- I‟m thinking let‟s just say somebody who lives in a very rural area where they are no longer able to function in that existing job that they had before and the only other jobs that are available surrounds are jobs that would aggravate or further, you know, harm the individual, like mining or something along that line, I mean, it seems that there has to be some sort of consideration as can the person do the work that is available. I mean, because otherwise -- I understand it‟s not SSDI‟s responsibility to give people a job, but to protect them if they become disabled. But the fact that they can do any of the jobs that are in the area does indeed make them disabled. MR. EIGEN: In a sense you‟re absolutely right, but that‟s why I made such a big deal about it at the beginning. There is a what you call legislative history, It goes back decades, in which quite a bit of it actually. Congress says repeatedly that this isn‟t intended to be an unemployment program and that makes clear, or relatively clear, that the whole point of the statute about this subject is not that the person could a job. Audio Associates (301) 577-5882 So it doesn‟t matter. I‟ll give you an example of an issue that drives us all crazy. What if you‟re a person who -- at step What five we consider age, education, and work experience. if you‟re a person who lives in Puerto Rico and you only speak Spanish, but your -- you only speak Spanish and you‟re in Ohio or whatever. We don‟t consider that. We just use a national program that says most people have to speak English even though it makes sense that a person living in Puerto or Texas who speaks Spanish should be able to get a job over there speaking Spanish. We just say, no, we have special rules that say if you don‟t speak English you might be found disabled. So the whole point of all this is it‟s a hypothetical test of disability, not a test of whether you can get a job. So it hurts to think about it. I totally understand what you‟re saying. I mean, it‟s not even common sense necessarily, but that‟s why I made it a point of bringing it up so that you could understand that, what it is we‟re trying to do in these rules. We‟re bound by a law. That‟s a You know, unless the statute changes that‟s ---. great question, and it‟s very vexing obviously. One other point about that by the way. We do have a rule that says if the only other job you can do is an isolated job that really doesn‟t exist except in one place we don‟t count that. We won‟t hold that against the person. Audio Associates (301) 577-5882 Anything else? Okay. MS. MOORE: Thank you, Sue. Thank you, Social Barry. Okay. We‟re going to move on to the next. Security is gathering information from coast to coast on perspectives regarding the immune system listings. We have two young ladies who will bring us the summary of major themes from the Philadelphia conference in a very unique way. Please welcome Donna Sue Bongardt and Nancy While they‟re coming I just want to remind you If you leave please complete Schoenberg. to complete your evaluations. those before you leave. Summary of Major Themes from the Philadelphia Conference by Donna Sue Bongardt and Nancy Schoenberg MS. SCHOENBERG: Hi, everybody. Schoenberg and this is Donna Sue Bongardt. I‟m Nancy We both work in I the Office of Disability and Income Security Programs. have been with the Office of Hearings and Appeals since 1991 and am on detail. against me. I‟m an attorney. Please don‟t hold that Donna Sue has worked everywhere in the agency and has now landed under the clutches and auspices of Martin Gerry. After the Philadelphia conference Pat and Martin -- Pat is our Assistant Deputy Commissioner -- asked us to do a summary of the themes, the major themes that came out of Philadelphia, and so we did this whole recap, and it‟s about what we did, why we did it, what we learned, and how this Audio Associates (301) 577-5882 benefits the agency. We did do a formal Powerpoint. The one that applies to today‟s group is the last document before the handout section in your book. Powerpoint. We will not be giving this We‟re going to do You can look at it later. something a little different, so sit back and enjoy the show. MS. BONGARDT: Good morning. My name is Donna Sue, and Nancy and I are actually going to be -you‟ll find out. We‟re going to do a skit this morning that basically goes over what we learned, and I think you‟ll find it enjoyable and hopefully informational. Thank you. So if we can go to the next slide -- it‟s not going. (Adjusting equipment.) MS. BONGARDT: This is our legal disclaimer. The story you are about to be told is based on actual events. The characters are completely fictitious. Any resemblance to persons living or dead is purely coincidental. The views presented here are a composite of those expressed in Philadelphia on December 15th, 2003. Note this constitutes official guidance only. Security -MS. : No, it‟s not. Sorry. Instead the Instead the Social MS. BONGARDT: Administration hopes to gain more knowledge and Audio Associates (301) 577-5882 understanding in San Francisco to build on what was heard and discussed in Philadelphia. Okay. The scene: Two Social Security One works in The employees are talking at the end of the day. the Office of Disability and Income Security Programs. other is a total burnout from some other part of the agency. MR. conversation. MS. SCHOENBERG: (Singing "Born to be Wild.") : Well, that‟s a good Donna Sue, the IG is going to investigate you for working too many hours. You‟re not allowed to do it. MS. BONGARDT: completely lost track of time. Powerpoint I‟ve been working on. MS. SCHOENBERG: you could use a break. Yes. Well, you look like All work Oh, gosh, ---. Oh, I I‟ve been so busy with this You know what they say. and no play makes Donna Sue a boring girl. MS. BONGARDT: I know, but I‟ve got to get Martin ready for this policy conference in San Francisco. and Pat asked me I would give a presentation on the themes we learned from the Philadelphia conference we had back in December. MS. SCHOENBERG: Donna Sue, besides perfecting the Powerpoint what do you do at these conferences and who comes to me? Audio Associates (301) 577-5882 MS. BONGARDT: Well, we go out to discuss our We invite latest advance notice of proposed rule making. everyone who commented on it in an effort to hear what they have to say first hand. Most of the attendees are either individuals with the disorders themselves or people who are really knowledgeable about them, the doctors, the advocates, interest groups, and others who are out there helping people apply for disability benefits. MS. SCHOENBERG: the rule? MS. BONGARDT: Nancy, these people have so And how does this help us do much to teach us, things we might not realize or be aware of unless we took the time to listen. MS. SCHOENBERG: MS. BONGARDT: Like what? Well, like how diseases, different diseases, affect women differently than man and how the affects of multiple impairments is exponential rather than linear. MS. SCHOENBERG: MS. BONGARDT: Multiple impairments? Right. Multiple impairments are exponential rather than linear. MS. SCHOENBERG: MS. BONGARDT: MS. SCHOENBERG: MS. BONGARDT: Linear. Right. Exponential. Exactly. Audio Associates (301) 577-5882 (Laughter.) MS. BONGARDT: Exactly. Can you, you know, maybe MS. SCHOENBERG: give me maybe a real-life example? MS. BONGARDT: Okay. Say someone has an autoimmune disorder like Lupus. MS. SCHOENBERG: MS. BONGARDT: Yeah? Well, did you know that when someone has Lupus many times they develop another autoimmune disorder? MS. SCHOENBERG: MS. BONGARDT: Actually I didn‟t know that. Well, it‟s very common, and when a person has two autoimmune disorders the effects aren‟t exactly doubled. quadrupled. MS. SCHOENBERG: Oh. I see. So it‟s kind of They‟re more like tripled, like you and me, we each have, like, conditions, and each of our conditions just by themselves aren‟t that big a deal, but when you put them together it‟s rather exponential. MS. BONGARDT: (Laughter.) MS. BONGARDT: MS. SCHOENBERG: in Philadelphia? MS. BONGARDT: Well, some of the most eyeExactly. So what else did you learn Exactly. Audio Associates (301) 577-5882 opening presentations in Philadelphia actually came from the individuals who had the disorders. They talked about how complicated these illnesses can be and how devastating the effects can be. So when you talk about looking for a qualified doctor who can weigh in on severities you need doctors who are in current practice who are abreast of all the latest developments and treatments for the conditions, and also who devote a substantial percentage of their case load to working cases that deal with these specific disorders. MS. SCHOENBERG: Well, that makes a lot of But what sense, and it‟s great if you live in a big city. if you don‟t live in a place like that with a lot of specialists? Like say you live in a state like Georgia in a town like Reedsville where the only thing there is a state penitentiary. (Laughter.) MS. SCHOENBERG: to do? MS. BONGARDT: Well, you‟re right, Nancy. Then what are you supposed Many people don‟t live near big cites and they don‟t have access to specialists, much less state-of-the-art care. MS. SCHOENBERG: This is really depressing. Do people who have immune disorders suffer from depression? I mean, is that a common factor? Audio Associates (301) 577-5882 MS. BONGARDT: It is a common factor. Many people with immune disorders suffer from depression, whether it‟s a direct result of the disease itself or is a side effect of the medications. When people are depressed it can affect their ability to adhere to their treatment, which in turn can reduce the likelihood of the treatment‟s efficacy. MS. SCHOENBERG: MS. BONGARDT: MS. SCHOENBERG: What a vicious cycle. It can be. But if the person‟s depression is controlled with medication and they‟re compliant with the rest of their treatment regimen won‟t their condition be stable? MS. BONGARDT: These diseases are chronic. good days. It‟S not that simple, Nancy. They wax and wane. They have They have bad days. When a person seems better it‟s often a result of the condition being well-managed, which can be misinterpreted. The fact that an illness is managed doesn‟t necessarily mean that the person is any better or that they can or should work. a flare-up or interfere with treatment. MS. SCHOENBERG: MS. BONGARDT: one answer. themselves. So what‟s the answer? I don‟t know that there is any Working can trigger Some people want to work, but need to pace Other people want to stop working but can‟t because they‟ll lose their health insurance. Audio Associates (301) 577-5882 MS. SCHOENBERG: ground? MS. BONGARDT: Isn‟t there any middle Well, I suppose ideal situation would be an employer who allowed them to work a flexible job at alterative job sites, maybe even do some work from home, and guarantee them health insurance. that‟s a very difficult combination to find. MS. SCHOENBERG: Yeah. I think our rules are But pretty rigid. I mean, if you want to work you can‟t be disabled, and if you‟re not disabled you can‟t health insurance from the government. MS. BONGARDT: So you‟re kind of stuck. You‟re right. And once a person‟s health insurance lapses it can be very difficult. They can almost become uninsurable because they have a serious pre-existing condition. MS. SCHOENBERG: Donna Sue, now that you‟re working with these big policy wonks isn‟t there anything SSA can do to help these people? MS. BONGARDT: help them. Well, I think we are trying to We‟re trying to be more flexible and listen to how we can make our rules better. MS. SCHOENBERG: MS. BONGARDT: (Laughter.) MS. BONGARDT: I lost my card. Audio Associates (301) 577-5882 You are? Yes, but -Really? (Laughter.) MS. BONGARDT: But we‟re bound by the statutory definition of disability, which is an illness that‟s expected to last at least 12 months or longer, or be considered terminal. MS. SCHOENBERG: tells people that. I heard that Barry Eigen I don‟t know if I have enough sick leave to cover 12 months, and I don‟t have enough money to last that long to pay all my bills. health insurance. I can‟t imagine not having How do these people survive? Well, Nancy, it‟s difficult, The good news is that we are MS. BONGARDT: and many are very frustrated. trying to change what we can to be more responsive and to listen to how we can write our rules better. is that people appreciate it. Philadelphia. MS. SCHOENBERG: really shakes and bakes. MS. BONGARDT: Yeah, policy is really great. Well, Donna Sue, this stuff The end result That‟s what they told us in It‟s about the changing needs of people with disabilities and designing rules that are flexible enough to change as their treatments do. It‟s dynamic. Man, this sounds really MS. SCHOENBERG: radical. I might like to be part of something like this. MS. BONGARDT: Well, Nancy, we can use every Audio Associates (301) 577-5882 person that wants to makes a different. How many people can go to work every day and feel that their efforts affect millions? MS. SCHOENBERG: like to be one of them. MS. BONGARDT: have any postings. Well, I‟ll let you know if we Not very many, but I‟d sure In the meantime let‟s get going. Tomorrow is going to be here soon enough. MS. SCHOENBERG: Powerpoint. MS. BONGARDT: MS. SCHOENBERG: (Applause.) MR. MS. : : That song is great. Is there an agent in the house? Oh, yeah. Thank you. Don‟t forget your (Singing "Born to be Wild.)" (Laughter.) MS. MOORE: Okay. We‟re going to take a 15Okay. What minute break before we go on with our speakers. time is it? I left my watch over here. MS. MS. MOORE: : 9:35. 9:35? Okay. Then 15 minutes. Come on back at 9:55 -- 9:50. Sorry. (Whereupon, a short break was taken.) MS. MOORE: Okay. I would just like to say that we are grateful to have all of our speakers here today. Audio Associates (301) 577-5882 What we will do is we will go through each of the speakers. You will have an opportunity to ask questions after each speaker. Okay? And then we‟ll take maybe a five-minute stretch break after the second speaker and continue until lunchtime. Session One Topic: Immune System Listings (except HIV) MS. MOORE: The first speaker I would like to introduce is Virginia Ladd from American Autoimmune Related Diseases Association. Presentation by Virginia Ladd MS. LADD: much. That‟s correct. Thank you very First I‟d like to thank the organizers and the Social Security Administration for inviting myself to make this presentation on behalf of people with autoimmune diseases. I very much appreciate it. That National Institutes of Health estimates that up to 22-million Americas are affected by autoimmune disease, and this number includes only those diagnosed for which -- for only those diseases there are epidemiology studies. So even in their report to Congress they said that up to 22-million was probably an underestimate, also given the fact that many of these diseases have a difficult time being diagnosed. By gender there‟s definitely a gender bias on the part of autoimmune diseases, and this is autoimmune diseases as a whole. 75 percent are women, about 25 percent are men. Audio Associates (301) 577-5882 About There are approximately 100 such diseases affecting we say up to 50-million, and that‟s based on a genetic predisposition breakthrough. They cost according to Dr. Faulchi* at NIH approximately $120-billion annual, 250,000 cases are diagnosed each year; and this was a surprised, a study that was published in the last two years, that in fact they are one of the top 10 causes of death in women -- actually number five. Then 24 of the most common autoimmune diseases, and I put this list up here because very often autoimmune diseases are thought of as the rheumatic autoimmune diseases -- Lupus, rheumatoid arthritis, Sjögren‟s, Scleroderma, and the ones in that area. But in fact there are, you can see, many more autoimmune diseases that are not rheumatic -- primary biliary cirrhosis, rheumatic heart disease. Rheumatic heart disease is actually one of the major causes of cardiomyopathy and, as you probably know, cardiomyopathy is a big disabler. The history of autoimmune disease. There are many different disciplines involved, but there is no autoimmunologist. So in the skit we heard something about a patient having to go to many different doctors because many of the autoimmune disease are systemic in nature, so they may involve the lungs, the kidney, the central nervous system. Well, that‟s a pulmonologist, rheumatologist, Audio Associates (301) 577-5882 nephrologist, and neurologist just in those symptoms, and that‟s true with multiple autoimmune diseases. different disciplines involved. the diagnosis. So many This also interferes with We know from a study that we conducted that the average patient sees 4.9 doctors over four-and-a-half years prior to getting a diagnosis that is confirmed by a second opinion and a specialist so we know they really have it. Interestingly enough, over 50 percent have been told they were too concerned with their health or chronic complainers prior to getting that definitive diagnosis. that‟s part of it, because of many disciplines. Rheumatologists tend to think in terms of joints, and neurologists tend to think in terms of the nervous system and really don‟t hear the patient say, "My knees hurt." They just don‟t hear it. "Well, why are you telling me?" So There‟s one called Wegener‟s granulomatosis that starts out with a very bad inflammatory process in the sinuses, and so they‟re sent to ear, nose, and throat doctors all the time who cannot find an allergy, who cannot find an infection, and they never hear the patient their knees hurt, which is a primary symptom, and once the lungs and kidney are involved it can be a lethal, fatal disease. It often has a history of three or four years prior to that of somebody seeing many different specialists. So there‟s a lack of focus on the underlying etiology, which is the Audio Associates (301) 577-5882 autoimmune response, autoimmune meaning self-immune, your immune system attacking yourself. defense terms. I like to explain it in It‟s like friendly fire. Pretty much the research is disease-specific. So you‟ll see research in --- diabetes. silo*. another silo*. You‟ll see endocrine diseases. That will be one That might be You‟ll see research in Scleroderma. That will be another silo*, but not a lot of crosstalk about the research among the different disciplines. There‟s also a lack of a coordinated approach at NIH, which has resulted in much duplication, and this is actually getting better with the National Institute of Health Autoimmune Disease Research Coordinating Committee, which has now developed a national research plan for autoimmune disease. There‟s very little public awareness of autoimmunity as the underlying cause of these diseases, and the problem with that is they do run in families, they are genetic connected. As was stated, a person with one autoimmune disease can develop other autoimmune diseases. It‟s not uncommon at all, but within a family you may have three or four autoimmune diseases which would seem unrelated. Now the family really doesn‟t -- may not know We know from a Roper study that only they‟re autoimmune. 5.5 percent of Americans can even name an autoimmune Audio Associates (301) 577-5882 disease. So it is not a question that‟s asked on a health So the fact that your history when you see a new physician. brother has Crohn‟s might not show up in your history when you‟re presenting with symptoms of some other autoimmune disease. So under the disability evaluation in Social Security -- which is what we‟re here on. I wanted to give you that background, though, first -- listed disorders include impairments involving deficiency of one or more components of the immune system, antibody-producing B-cells, and a number of different types of cells associated with cell-medicated immunity including T-lymphocytes, macrophages, and that‟s what‟s involved. listed. That‟s how it‟s This is what you use to determine what‟s It‟s a autoimmune, B-cell, T-cell, antibody driven. disregulation or thought to be disregulation of the immune system, although there is discussion whether it‟s a disregulation or an immune deficiency. But nevertheless, there is some disregulation of the immune system that may result of the development of connective tissue disorder. Now, connective tissue disorders involve multi-systems and different in their clinical manifestations and outcomes, but generally involve and persist for months or years and may result in functional -- loss of functional ability. what you say in the evaluation process. Audio Associates (301) 577-5882 This is We believe that all autoimmune diseases should be listed under one category because they share the same etiology and genetic connection. I know that‟s not the way you‟re set up, but you are I see putting many more over there under autoimmune; and so we would like to encourage that, because in the listings in the manifestations you can see really some very significant similarities in how they actually end up affect the person. Serious and disabling autoimmune disease that are not listed, Behcet‟s disease, very serious, a sometimes fatal autoimmune disease. It causes many of the many of the Chronic inflammatory symptoms that you might see in Lupus. demylineating polyneuropathy would look a lot like polymyositis or one of the other neuromuscular diseases that escapes me right now. Antiphosphalipid Syndrome can It‟s not unusual. accompany multiple autoimmune diseases. It‟s often thought to be associated with Lupus because a very high percentage of Lupus patients may have Antiphosphalipid Syndrome, but it also accompanies many of the other autoimmune diseases including even thyroiditis. Bullous pemphigoid, which is an autoimmune skin disorder and also a very serious, life-threatening illness, that would cause joint pain, fatigue, and many of the very similar symptoms that you would see associated. --- psoriatic arthritis, primary biliary cirrhosis, Crohn‟s disease -with Crohn‟s disease you tend to think of the Audio Associates (301) 577-5882 gastrointestinal, and it is gastrointestinal autoimmune disease, but it‟s not at all unusual for somebody with Crohn‟s disease to have arthritic manifestations. Autoimmune hepatitis, one of the fifth reasons people call our office, yet very underestimated in its damage to the patient because they end up needing transplant because they are not diagnosed. Usually it‟s four to five years before However, you someone even thinks of autoimmune hepatitis. will see a whole history of testing for hepatitis C, hepatitis B, hepatitis A, but no consideration of autoimmune hepatitis until the liver is significantly damaged. There has been a paradigm shift in our knowledge about autoimmune diseases, especially in the last decade. Autoimmune diseases are now known to have a common disease pathway, be genetically linked. Autoimmune diseases need to be recognized as a category similar to cancer rather than being listed under the part of the body affected. That is actually how they‟re treated, and that is what results in a significant problem for the patient, seeing these multiple doctors with multiple opinions, and when it comes to a -when they apply for disability the doctor that may be seeing them, you know, they may have this whole other system involved of which this doctor is not really cognizant of and knows very little about actually. Autoimmune is the cause of disease, although Audio Associates (301) 577-5882 atomically autoimmune diseases are very diverse and can affect almost every organ or system in the body, and some of the autoimmune diseases such as Lupus can also affect any part of the body. Behcet‟s can affect any part of the body. Sjögren‟s can affect many parts of the body. Autoimmune liver disease can also cause arthritis. So the systems involved in autoimmune disease are gastrointestinal, endocrine, circulatory, cardiovascular, pulmonary, neurological, eye, ear, skin, kidneys. This just kind of gives you an idea, kind of a This actually can show that, the different scheme here. diseases, but one person may have multiple, three or four of these disease. From the onset of their first autoimmune disease within 20 years they may have three or four of these autoimmune diseases. It‟s not at all uncommon. So what are the disabling manifestations of this disease? Well, fatigue, and fatigue is in your listing under Lupus, but it‟s not considered in the other autoimmune diseases. Yet it‟s a very prominent feature of multiple autoimmune diseases, and when the patient describes the fatigue it is not "I‟m tired," like you and I might thing of being "I‟m tired." If you think of when you are first coming down with the flu, a bad flu, and how you feel at that time when you say "Well, something‟s wrong," that is how a person with autoimmune diseases feels a large part of Audio Associates (301) 577-5882 the time. So you can see how that might be disabling. It‟s an overwhelming, unrelenting fatigue. Pain, usually muscle and joint, crippling, neurological manifestations which are anywhere from a stroke, MS -- for instance, as many neurological manifestations, but it can also be psychosis even can be a part of autoimmune diseases. So there can be impaired overall functioning, not just with the system involved. Muscular weakness, atrophy, impaired ambulatory ability, weight loss, fever, anemia, all of those that I mentioned I could probably name 10 or 15 autoimmune diseases which would share those similar symptoms, many of which are not even listed under immune. I‟m not going to say too much -- I see the Lupus Foundation will be talking about Lupus, so I‟m going to skip that. They can address that quite easily. I just want to point out that those symptoms are common to multiple autoimmune diseases. But only in Lupus is the fatigue ability considered as part of the criteria for disease evaluation. It doesn‟t matter if you have Lupus or polymyositis, you can be as fatigued. Many patients have more than one. We‟ve talked about that, more than one and even as many as four or five. Some of the little humor that patients say, if you live long enough with one you get to collect them. (Laughter.) Audio Associates (301) 577-5882 MS. LADD: New treatments for several autoimmune diseases that may impact on a person‟s disability, probably the newest approach to treating a rheumatoid arthritis, psoriasis, and MS -- although MS is not quite a TNF inhibitor -- are these new TNF inhibitors. With these treatments they may allow a person to return to work. They can even halt crippling manifestations in Crohn‟s it may make a very rheumatoid arthritis. significant difference, but it may allow them to return to part-time work. They‟re not cures. So these treatments do not end the disability or cause such improvement that the patient could return to gainful employment; and I think that the skit kind of pointed that out a little bit, too, that the waxing and waning is the major ---. So I just would like to put out there should partial disability be considered as an option, and from our standpoint we believe it would be good for the patient and good for the government. Because many of these people just don‟t have the endurance to work the 40-to-45 hours that our society now requires of us, and when they try to their disease flares up; and so then they‟re sick again, and then they have a real fear if their own disability of trying to work because they‟re going to be expected to work 40-to-45 hours, and it is -- they know that that‟s very risky business. That‟s all I have to say. Audio Associates (301) 577-5882 Thank you. (Applause.) MS. MOORE: MS. LADD: Would you like to take questions? Sure. If we can do that now. I actually have to catch a plane, so I won‟t be able to stay through the whole panel. But I know everyone else can cover all these, cover almost any question on autoimmune as well as their singular disease. MR. MS. MOORE: : Okay. She ---. Okay. And if you have a question if you please state your name and where you‟re from so we can get that documented. MR. EIGEN: First, thanks. Barry Eigen, Social Security. I noticed something That was very helpful. about our listings that‟s very unclear that we need to fix. Can you say more? When I was reading the comments I noticed the comment that said -- we got several comment letters that said we needed to list these various conditions within the immune system. But as I mentioned in my little talk, they‟re all cross-references to other body systems anyway, and so in a sense -- well, not entirely. I mean, each listing has an extra paragraph, but in a sense they‟re kind of redundant in that regard. So could you say more about what it is you‟d be looking for us to do in an immune system? Say for example you have an autoimmune disorder that manifests itself on the skin and it meets one of our Audio Associates (301) 577-5882 generic skin listings which could be caused by anything. What would we put in our immune disorder listing that would be different from what we already have for a skin disorder, or a mental disorder say? MS. LADD: Well, probably the propensity for the diseases to overlap, which you would not see under the skin manifestation. You would probably be just looking -That‟s a for instance, psoriatic arthritis -- or psoriasis. skin disorder. It can be just a skin disorder. It can even But a be severe enough to be disabling as a skin disorder. person with that can develop another autoimmune disease called psoriatic arthritis which then would push them over into the arthritis category and is just -- it just doesn‟t fit the matrix of what‟s really happening. So to answer your question, you link all cancers together because in laymen‟s terms and very simply put, all cancer is caused by the immune system allowing a mutant cell to proliferate. All autoimmune diseases are caused by the immune system attacking your own tissue, whether that‟s your joints, your skin, your eyes, your hair. That‟s what‟s happening. That‟s the common pathway of the disease; and what triggers that may differ, because they can be triggered by infection, environmental, toxins, and even stress -- and the stress is an important consideration because they now know that stress definitely can act as a trigger in somebody who has an Audio Associates (301) 577-5882 autoimmune disease. So you can see where this "I‟m trying I want to work," to work because I‟m feeling better now. and then the stress of that along with the endurance factor then they‟re back where they are, and often in a worse condition because maybe another major system becomes involved because of that attempt to go to work. MR. EIGEN: Thanks. Susan Lauritzen from the DR. LAURITZEN: regional office. I‟m wondering if, Barry, your question isn‟t in under Lupus with where you have the B criteria where there can be the two or more organ systems including, you know, the fatigue. It sounds like then if we had that for everyone that that would be the answer to this crossover kind of -MS. LADD: It would be such an improvement. Thank you for that. DR. LAURITZEN: Okay. equivalents for that listing. So using those medical I mean, if you can crossIf reference, even if you didn‟t change the listing now. you could use -- I‟m in the child, a pediatrician, so I‟m working --- with the childhood listings where we have the functional equivalents choice where you can say you can refer, you know, to a different listing a little more easily than the adult listings. need for these Audio Associates (301) 577-5882 But it seems like that‟s what we --- because you‟ve got sort of what you‟re talking about under Lupus. MS. LADD: Actually that came about --- Lupus Foundation, and that was work that the Lupus Foundation worked very hard on Social Security to get that listing listed that way, but it applies. right. I think you‟re absolutely It would apply to multiple autoimmune diseases and would be very much --- more matrix approach to it. MS. : So we might have that built in already as an example that they can expand on. MS. have to more on. : One more and then I think we Back there. I‟m Bonnie Doak with the Immune Did you say that MS. DOAK: Deficiency Foundation. I have a question. one of the criteria that‟s listed the disability was fatigue? MS. LADD: Yes, in Lupus. Only in Lupus, but that‟s what we‟re talking about is -MR. EIGEN: --- clarify that. It‟s in all the other listings, but that‟s one of the things that‟s not clear. MS. LADD: Okay. Well, it‟s not clear to the examiners, because we hear that. MR. EIGEN: right. It‟s not there. Audio Associates (301) 577-5882 No. It‟s not there. You‟re MS. LADD: Okay. Thank you very much. I had to get MR. EIGEN: technical there. I‟m sorry. We actually do list fatigue in all the other listings, but I realize that -- listening to the talk and looking at the regs it‟s not clear at all, but it is in there. MS. MOORE: Okay. Our next speaker will be Sarah Patterson from National Organization of Social Security Claimant Representatives. Presentation by Sarah Patterson MS. PATTERSON: MS. MOORE: Good morning. Is this on? There‟s a little switch. Oh, here? Again, my name is MS. PATTERSON: Sarah Patterson and I‟m here this morning representing the National Organization of Social Security Claimant Representatives, which is a national organization encompassing approximately 4,000 attorneys who specialize in Social Security disability cases representing claimants. I‟ve been doing this work for about 20 years. cases probably in a dozen different states. here in San Francisco for 10 years. I‟ve done I practiced I‟m now living in Portland doing some cases up there, and I was also the 9th Circuit representative to the Board of Director at NOSSCR for two years. So my expertise I must admit is a little bit more in the HIV-related part of this section, but I Audio Associates (301) 577-5882 certainly have done a fairly significant number of these cases over the years, and this is my contact information should anybody have any questions that come to mind later. So I wanted to talk just a little bit about the structure of the law the way it exists now. I‟m also curious how many people in the audience are from outside of Social Security. Could you just raise your hands? That was my impression from yesterday. So the current introduction to section 14.00, which is really quite a useful thing from a legal point of view, and unfortunately not used very much in our experience in the DDDs and in the determinations. But the commonality, the themes of this are that the diseases evolve and persist for many months or years. They result in significant loss to functional abilities by which we mean ability for selfcare, concentration, persistence, pass, decompensation in work and work-like settings and that sort of thing. They require long-term and repeated evaluation and management, and as the previous speaker said a lot of times we see records of people who‟ve gone to multiple doctors over the years. Frankly they‟re thought to be kind of chronic whiners, and finally they get a diagnosis that brings it all together, and it‟s a very difficult evaluation to get. There‟s also a commonality in that the treatment itself can cause adverse effects. The disorders actually preclude Audio Associates (301) 577-5882 substantial gainful activity because of this loss of function, and that‟s particular I think to this particular listing; and also there are significant constitution symptoms and signs such as fatigue, malaise, joint pain, stiffness, medication side effects, all of which can practically in themselves be disabling. So the role of the introduction to 14.00 is to provide detailed guidance for all disability evaluators and adjudicators at every level, and again as attorneys we find that these are just largely ignored by the DDSs and sometimes by the ALJs, frequently by the medical experts at the hearings, and certainly by the consultative examiners, but they do play -- this does play a very important role, even in cases where the impairment does not meet the listings of impairment, which actually is most of these cases. It would be NOSSCR‟s suggestion that Social Security should include more of the language and the policy that‟s in the Social Security rulings into that introductory material so it‟s more accessible and more -- I don‟t know what the word it is. It‟s not credible, but -- you know, it just So needs to be in a place where everybody can pull it out. if I‟m talking to a medical expert at a hearing, you know, he might not even have heard of a Social Security ruling. He has no idea what I‟m waving in his face and asking questions about. If it were in the introductory material it Audio Associates (301) 577-5882 would be more clear. So I think everybody will be talking about this today. The symptoms of these are commonly fatigue, joint pain, swelling, weakness, anxiety, depression, headaches, and all of these are subject to exacerbation by stress and by working. Sometimes people will try to go back Some of to work and it will just push them over the edge. them are very difficult to diagnose. for them. There‟s no single test Sometimes very often it‟s a disease that‟s diagnosed in the process of elimination, and it can take many, many years. The symptoms mimic many other illnesses. The symptoms are vague and transient, which makes it again very difficult to quantify and pull into one diagnosis, and also unlike many other of the listings there‟s a big degree of credibility in these cases. Credibility plays a major part, and most of the symptoms that are being reported are subjected. So where to look for guidance? Actually Social Security has a pretty fabulous set of guidances in the Social Security rulings. Social Security. These are policy statements by I think represent great victories for advocates of these different disease organizations who have actually manage to work through the process, in some cases getting the CDC to get onboard and provide a diagnosis, and then finally it works its way up into Social Security Audio Associates (301) 577-5882 policy. Barry was saying yesterday that it‟s much easier to produce a Social Security ruling than it is to make a change in the listings, and I think these particular ones really represent very skilled advocacy organizations who have figured out the system and worked their way up and gotten things actually written down in black and white which are very, very helpful. What‟s not so helpful is that a lot of people just ignore them as they weren‟t there. But what is a Social Security ruling? an official policy statement. components of Social Security. It‟s binding on all It‟s published in the It‟s Federal Register and available online at the quite wonderful Social Security website, which I use a lot. The common issues, there‟s kind of an eloquent structure I think to these. They‟re set up so that they set up the medical science and systems of each of the diseases that they address, they address the transient nature of the symptoms, they say when the functional impairments have to be considered, and they emphasize the importance of treating source and third-party evidence. They talk about pain and particularly they talk about credibility. If the symptoms do not meet the listings, and again in these cases often it‟s very, very difficult to meet the listing, and there may not even be a listing. Audio Associates (301) 577-5882 Then they have to work with the concept of equivalence, which is a very mushy term, very difficult to explain to anyone. If I‟m working with a treating physician and I see that the person does not exactly meet a listing but they have components of a couple different listings getting a physician to say that, they almost think they‟re being kind of corralled into saying something that maybe isn‟t quite ethical, or they‟re just not sure what it is. concept that really needs to be clarify. It just is a I‟ve had medical experts at hearings just kind of throw up their hands and say, "Well, I don‟t really know what that means." So if somehow that concept could be really clarified, you know, that -- I mean, what I say to people is that it means equals in functional impairment this other listing. So if the person had, you know, AIDS and they had these functional impairments that go with that and you‟re talking about some other disease there and it would be equal to this listing, you know, yada, yada, yada. It‟s just very, very difficult to explain, and I don‟t ever see it applied by DDSs at the lower level. I was speaking the physician from Missouri DDS I think it was and, you know, I think the attorney‟s point of view -- and this is always. get denied. We see the cases that You know, Social Security thinks, well, we‟re granting half of these cases, and they‟re looking at those Audio Associates (301) 577-5882 cases that go through on which they did do a good job. Everyone has too much work. job. Everyone is trying to do a good But, you know, 50 percent of cases or more are decided wrongly and people are suffering for many years, and it‟s really very difficult to watch from an advocacy point of view. In all of these disorders, too, there is a very important psychological component. This again is difficult for claimants to swallow when they come in to see me and I say, "Well, we really need to get a psychological evaluation." They hear that almost uniformly as, "You think And in fact for good or this disease is all in my head." for bad, a lot of the cases can be won if decent psychological evaluations are done, because it provides some very quantifiable evidence that adjudicators are familiar with. It gives them language and structure for whatever it That is something they can hang is, depression or anxiety. their hat on, and a lot of times cases can be decided on the psychological aspect alone, and then the other things just become additional symptoms that add the various symptoms that the person is suffering. It also can include side effects of medication, and the mental impairment itself may be a manifestation itself of the underlying illness. Again the transient nature of the symptoms is the most difficult thing to deal with in these, and it is Audio Associates (301) 577-5882 just the nature of the illness. Things wax and wane. Sometimes thing are stable for a period of time, a long period of time. There‟s relapses, and these are just indeed characteristics of the illnesses that we‟re talking about. I‟ve had actual -- I mean, I‟ve represented quite a large number of these people, and I‟ve had several friends who‟ve had chronic fatigue and different autoimmune disorders, and it‟s just very fascinating to watch on a personal level. They will be like, you know, flat on their back in bed for four days and then up, you know, rollerblading. You say, well, how about a little moderation on these days that you feel well?" and my friend would say, "Well, you know the energy lasts for two or three days. I know that‟s the only energy I‟m going to have for the next three weeks no matter what I do, if I sit and drink tea all day or if I go rollerblading. going rollerblading." evidence. So I‟m You know, and you see that in the Perhaps somehow that works its way into the medical evidence, which would be very unfortunately from my point of view as an advocate, but there it is, and it‟s really not conflicting evidence if somebody can pull -- you know, just draw a bigger circle around this. If there are conflicts in the evidence, Social Security‟s obligation is to first clarify this with the treating sources. Again, for logistical reasons this Audio Associates (301) 577-5882 just never happens. I just rarely, rarely see treating doctors contacted for either clarifying information or the original examination. People are, as we were talking yesterday, just routinely sent out for consultative exams to, you know, some physician who may have no expertise at all in any of the areas that relate to these autoimmune disorders. I know because I hear from DDSs, and people were saying yesterday that people try four and five times to get in touch with the treating physicians. responses. It‟s a problem. They don‟t get I solve It needs to be solved. it for my cases because that‟s my job, because I don‟t get paid unless I win the case and I guess that makes a big difference. It might take me 10 times contacting a doctor, you know, just politely following up and calling the office and whatever, but I get that information. information, and it wins the cases. From a point of view of a taxpayer I get concerned often. Besides the human suffering that these It‟s obtainable long, long cases represent, I think it‟s seven years your commissioner says, isn‟t that right? Federal Court? From initial through I think it‟s a seven-year time period of which the task time is some frightening low number like 26 days. You know, that‟s a lot of government manpower and womanpower that is wasted because somebody is not getting the information that was available at the initial Audio Associates (301) 577-5882 application level, and I think that‟s just a tragedy. know, I‟ve been working in the system for a long time. know it is just, you know, there‟s just roadblocks You I everywhere to making that happen, but that‟s what needs to happen. Adjudicators, once the medically determinable impairment has been established -- and that‟s one of the real values I think of these new rulings, is they kind of elevates these diseases to medically determinable impairments, where before you would never get past step two because you have this constellation of gate symptoms not related to each other from 10 different doctors. Now we have these rulings which define these diseases as medically determinable impairments, and this is a huge breakthrough in the law. That means that the adjudicator now has to evaluate the intensity of the persistence, the limiting effects of symptoms to determine the limitations on the ability to do basic work activities. Again, the importance of the treating source opinions cannot be overemphasized. deference. If we can get this they‟re entitled to Sometimes if they are completely supported by the medical record they are entitled to controlling weight. Again, if there‟s conflicts in the records -- and sometimes these conflicts are created by Social Security because they send people out to CEs to doctors who frankly have no Audio Associates (301) 577-5882 expertise in the area. don‟t know what. They come up with -- you know, I You sent They have no orthopedic impairs. them to an orthopedist and orthopedic impairments aren‟t even part of what they‟re alleging, and so there‟s some kind of weird conflict that never would be set up if somehow the accurate information could be gotten from the treating source in the first place. Obviously that detailed medical record, the longitudinal record, needs to be obtained. So like usually files this thick for 10 years of all kinds of trips to doctors and faulty diagnoses. Information from third parties is extremely useful. I really develop this a lot. I try to get 10 or 20 letters from people from, you know, ideally somebody with a few initials after their names. A nice pastor if there is one, friends who might have known this person for 20 years who say, you know, this world used to be a world traveler. She was a photographer. She was a writer. She held down a very demanding full-time job. She hiked, she went camping, You know, she and now she can‟t even do her own gardening. can‟t even go to the grocery store. You know, that kind of I say to information, what I call just little vignettes. people I don‟t want you to make a medical diagnosis of this person. I want you to just tell me snapshots of what you‟ve seen happen to this person over the years. I had an HIV case in San Francisco back in Audio Associates (301) 577-5882 the early „90s when this really -- you know, the epidemic was really heating up now, and the listings were just coming in and nobody really understood them. man wrote a letter. A neighbor of this He happened to be a nurse, which was a nice touch, but he just wrote it as a neighbor, and he said, "You know, I used to see Matthew going out, taking care of his own activities, going to the grocery store. Now I see him going to the grocery store and he comes homes and he walks up the steps and he sits down. Goes up two steps, sits down and rests, picks up his bag, goes up two more steps and sits down rests." You know, that‟s the kind of thing that is just heartbreaking detail that you can‟t deny, and it‟s the kind of thing that advocates -- you know, it‟s hard to get it from people and it‟s very, very important. So also I having people keep diaries I think is very, very useful. don‟t get that over a very long period of time because frankly I think people find it clinically depressing to do. I ask people to do it for week and just, you know, see sort of a pattern of what the energy flow is and how much people have to sleep, and when they have pain and that sort of thing. All these things, especially the third-party information, really buttresses the credibility of the claimant. Pain, the effects of chronic pain and the use Audio Associates (301) 577-5882 of pain medications have to be carefully considered. need to evaluate the impact of pain and its treatment. We The treatment of the pain sometimes can be disabling in some ways and effects of the pain medications on mental functioning. Sometimes is a big slowdown in mental functioning, or actually some medications can cause depression or anxiety, and all of the pain -- you know, people who are in chronic pain, managing chronic pain is a full-time job. I think it‟s something that unless you really are around somebody or you‟ve experienced it yourself you have no idea how it permeates every minute of 24 hours of your day. You can‟t do anything else besides worry about how you‟re going to manage the next waive of pain which you know is going to hit in two hours, and you have until 1:00 in the afternoon because you know you‟re going to hit a wall then and just go down. So everything has to be -- I mean, everything gets managed around that, and I think that‟s the kind of thing that really just never comes across in medical records, but it can come across from third-party or diary information. Return to work issues, I‟m assuming somebody else is going to be covering those, but I would just say from the emotional point of view I find it a terrifying thing, people going back to work. I with it worked better. Many I think a lot of people would like to return to work. Audio Associates (301) 577-5882 people would like to return to part-time work of some kind. But what I have seen in my experience is people perhaps going back to work, becoming disabled from the same condition, thinking they are just going to snap their fingers and going back on disability. It may be three months until that works it‟s way through the system and they might have lost their housing by then, and it is just not something that most people are willing to risk. I know in Portland there is a fabulous advocacy group that‟s overwhelmed with cases that has somebody that holds people‟s hands and walks them through that process and has access to the Social Security office. You know, those are great programs. I don‟t know how available they are in rural areas and whether that‟s a pilot program. I think it‟s improving a lot, but it is a very scary thing for people to consider, and it would be nice if some kind of part-time situations could be developed. I was talking to Sue yesterday about a couple of clients that I had spoken to. evolution of our culture. things on Ebay. This is kind of the These people had been selling And, you know, I don‟t know how much money But, you they were making; probably not enough to live on, know, it‟s a very variable sort of schedule. They can do it whenever they want, and if somehow -- I can‟t imagine how Social Security could work this into their regulations, but Audio Associates (301) 577-5882 if that kind of thing could be accommodated I think there is some creativity that could be put into play to accommodate the evolving job market. I was told the other day that Jet Blue Airlines contracts with housewives in their kitchens with computer and does all of the stuff that‟s on their website. It just contracts it out in what were describing So people aren‟t making quilts They‟re punching as the new age piece work. anymore. They aren‟t making widgets. buttons on computers at variable schedules when they feel like it. So something to consider, somehow working that in. So bottom line recommendations from NOSSCR are ask the right questions. If the right questions were asked from the beginning three-quarters of these cases would go away. I mean, the caseload would disappear. There are fabulous questionnaires that have been developed by the disease organizations. I know with the HIV Medical Association yesterday, they have a great questionnaire, and the questionnaires that are used now by Social Security as somebody said yesterday were kind of developed for the machine age. You know, they‟re about people who work in factories and lift things, and reaching and crawling through small spaces. They don‟t have anything to do with whether you can sit in your kitchen and process cases for Jet Blue or, you know, be a receptionist or do some of the other lowlevel work, lower exertional-level work that exists. Audio Associates (301) 577-5882 As we talk about changing the regulations, again as the HIV regulations yesterday, our general position is the regulations that are there are not so bad. I think probably more immune disorder things need to be added into them, but using the regulations and the Social Security rulings that we have would be stunning. aren‟t apply. They just simply I had an attorney -- I did kind of an informal survey of about maybe 50 or 60 lawyers in our organization. Most of them didn‟t have any suggestions to make on changes in the listings, but a woman in San Jose said the kind of fatigue, Social Security ruling, they just pretend it doesn‟t exists. They just pretend it doesn‟t exist, so training, and again if the information that is in those Social Security rulings could be incorporated into the introductory material at least or ideally into the listings themselves we can all go out of business. So I‟d like to see a system simply enough that I would be put out of business. system. People should not need lawyers to go through this Any questions? (Applause.) MS. MR. SKLAR: Security in Baltimore. : Did you have a question? Hi. I‟m Glenn Sklar from Social My question is is the frustration you experience as a practitioner mainly from difficulty in getting an actual diagnosis in these types of cases, chasing Audio Associates (301) 577-5882 a diagnosis, or is it the inability to properly apply the rules once you‟ve brought a diagnosis to Social Security? MS. PATTERSON: I would say the latter, because usually by the time I get a case the person has been denied once or twice. I would say most people don‟t walk in the door with a bunch -- you know, this weird constellation of symptoms without something to hang it on. They don‟t start seeing an attorney until they have a diagnosis of some kind. I mean, I‟m not a doctor. I‟m not going to take a person who has got a lot of aches and pains and fatigue and headaches and strange stuff and try to put it together into a diagnosis. That‟s not my job. So I would say it‟s getting Social Security to apply the rules. MS. SCHOENBERG: with Social Security. I‟m Nancy Schoenberg. I‟m What would you think if we made a presumption in favor of the claimant in situations where SSA can document that an attempt to clarify any conflicts was made and the treating physician didn‟t respond? Do you think that would help the situation, particularly with unrepresented claimants? MS. PATTERSON: help. How would it help? I don‟t know how that would I mean, it would show you did your job, but it doesn‟t really help the person. MS. SCHOENBERG: eliminate the conflict. In the sense that it would It would eliminate, it would give a Audio Associates (301) 577-5882 presumption in favor of the treating physician by eliminating the conflict. If the treating physician didn‟t respond then we would overlook the conflict and just accept the treating physician as the presumptive weight. MS. PATTERSON: understanding the situation. MS. saying? MS. LADD: I think what she‟s saying is that : Do you understand what she‟s I‟m so sorry. I‟m not if the treating physician doesn‟t respond after they‟ve already presented their views, but your asking for more information or whatever, just you can let that go and -MS. MS. LADD: : And give it the weight. Give the weight to the --- report. MS. MS. VOGEL: Deficiency Foundation. : Right. ---. Michelle Vogel from the Immune What I‟m finding a lot with our patients when they get to the point where they are denied and the get the list of advocates, the attorneys to help them, that the attorneys don‟t know anything about the primary immune deficiency diseases and many of them are telling them don‟t go further with these cases, that you have no chance. In that instance, I mean, how would you suggest working with educating the attorney base on these Audio Associates (301) 577-5882 cases? MS. PATTERSON: You know, I wouldn‟t waste my I time with an attorney that said something like that. would get on the internet. I would do a search for Lupus and Social Security and San Francisco and see what came up, because you‟ll find people who hold themselves out as having an expertise in this. I know at least two attorneys, one is Phoenix and one in Chicago, who do nothing but autoimmune cases, and they go all over the country and do them. certainly is particular expertise. There It‟ something that‟s -Maybe you You know, you know, maybe you want to be educating lawyers. want to be do something with the Bar Association. like something more broad to educate people, but there are attorneys who do this regularly. You know, I know how to win an HIV case in my sleep, and I have seen a lot of attorneys completely mangle these cases because they have no idea how to do them. So it‟s just what you know how to do. And I agree with you. I mean, we MS. VOGEL: have a program where we have attorneys who work with our patients, which is great, and we have a lot of our patients who go out and do the search themselves when they get turned down by the attorneys. They said, "Well, we‟re going to do But it‟s it ourselves," and they go through the process. disturbing when they get a list of advocates and all of a sudden the advocates say, "We don‟t know anything about Audio Associates (301) 577-5882 this. We‟re not going to help you." MS. PATTERSON: Well, you know, you don‟t Everybody‟s got want brain surgeons doing pediatric work. their area of expertise. MS. VOGEL: Yeah. MS. PATTERSON: back there? DR. MINNIGERODE: Kansas City DDS. Is there one more question Lana Minnigerode from the I just want to respond to the question about how much effort do you put into contacting treating sources when they don‟t respond. I think we can give some weight to a physician that says they‟re disabled when he doesn‟t respond, because a lot of times they are thinking that, "Darn, I already wrote that in the medical recorders. Why is this guy bugging me all the time to contact me?" Oftentimes I as a medical consultant will leave a message that says, "You wrote that in there and I would really like to just accept it, but I can‟t because I don‟t have enough to support. This is the deal. Please call me back." That‟s more efficient. I don‟t think that we train our medical consultants in Social Security disability well enough to leave the right messages. That‟s one problem. The other one is that if you‟ve got somebody that a light or a sedentary allows and they‟ve said they‟re completely and totally disabled that doesn‟t mean you still can‟t give them Audio Associates (301) 577-5882 a light or a sedentary. That just means that you‟re not going to give them a less than sedentary --- meet the listing. MS. PATTERSON: Yes. I would agree, and I think yesterday someone made the suggestion of why couldn‟t we use email to contact these doctors, and also because I knew you couldn‟t fully put out in your -- I‟m sure you leave good messages. Maybe it‟s easier to construct a I know sometimes people The other thing is to message in email for some people. leave sort of scattered voice mails. try to contact. Sometimes people have social workers in their office, case managers, physician assistants, nurse practitioners, even nurses. be able to. Just somebody else that would I mean, you can‟t ever get a doctor on the I never get a doctor on the telephone I don‟t think. telephone to call me back, but I can get somebody in the office to do that. So I use letters and I use staff support people in the office to get that information. The other thing, I think there‟s a difficult situation with physicians because they think they can write a one-paragraph letter that says, "I‟ve been treating this person for five years. The diagnosis is X. In my They think professional opinion this person is disabled." they have hung the moon for this person, and Social Security could care less about this letter now. Audio Associates (301) 577-5882 It‟s just got nothing in it that‟s useful, and the doctor thinks the job is done and they should never be contacted again. So this again is where, you know, if preliminary forms could be developed for each of these diseases and they could be sent to the doctors from the get-go we wouldn‟t have to be contacting them over and over and over again. mean, I don‟t blame them. Because, I I mean, They get really annoyed. sometimes by the time I‟m contacting them Social Security has contacted them 15 times and they‟re already really annoyed. So it‟s difficult, but -- you know, it‟s my job. MR. LEACH: Access Program. Hi. I‟m Bill Leach with the I work for program that represents claims with --- disorders, and I‟ve done probably 200 or 300 hearings all over the country in that capacity. I just wanted to followup more with comment more so than a question about your point about getting the judges to use the rulings and the introduction sections, and I just want emphasize that there is a training issue there because I work with the same problem all the time. I have to get the judge and the medical expert to look at the explicit listing itself. Anything that I suggest to them, it‟s like that‟s aspirational. It‟s not really ---. MS. MR. LEACH: : Aspirational. Great ---. Well, that‟ --- attitude that I get, and I think there needs to be more emphasis placed on Audio Associates (301) 577-5882 the fact that these are mandatory rules, that these are rules that are to applied in evaluating the disability for any adjudicator, whether it‟s an ALJ or DDS person. MS. MR. LEACH: : Exactly. I think it would simplify all of our lives considerably if they would just follow what‟s already in the rules. But to that end, I think that we can do a lot towards making what‟s in the rules a lot more explicit. I like your recommendation of taking what‟s in the SSRs and explicitly putting it into introductory sections for these conditions as well, because we do have guidelines that will work if we can get people to use them. MS. PATTERSON: Well, that‟s an evolutionary process, and I‟m sure that disease organizations will continue to advocate for that; but that‟s a great word, inspirational. MR. HATFIELD: I have two comments, and my name is Dave Hatfield from the Office of Hearings and Appeals, and they‟re sort of off the top of my head. So that‟s maybe a dangerous thing, but I‟m going to say them anyhow. The first is about the rulings, and I thought about this for awhile. When I get a new CFR I always annotate the regulations with the rulings that are associated with reg, and I guess this is a question of area Audio Associates (301) 577-5882 and perhaps some of the others. Is there any prohibition of possibly considering putting cross-references of Social Security rulings in the regulations? MS. that be nice. MR. HATFIELD: And I‟m not talking just for : Wouldn‟t that be nice. Wouldn‟t the listings, but I‟m talking for SGA ---, et cetera, where the rulings really do clarify or add, embellish the existing regulation. final rule. It could probably be done I would think by a It wouldn‟t have to be NPRM, and we would have finally some indexing of the regulations vice-à-vis the rules. I just throw that out. MS. PATTERSON: Fabulous idea. Be nice for a lot of advocates, too, because sometimes, you know, a new SSR will come out and I might not -- it might not come across my screen. it. MR. HATFIELD; Right. And when I train new I might not see it and even be aware of judges and decision writers, when Judge Heitz and I do that one of the things we always tell them is to annotate the rulings in the regulations. things in. is in the OHA arena. We have, you know, pencil these The second point, at least a suggestion, You talk about medical experts not Particularly these having at perhaps expertise in these. body systems that are at the OHA level are sometimes not Audio Associates (301) 577-5882 seen that much. In Pittsburgh where I‟m from we have about 23 medical experts on call, but most of these are practicing doctors at the University of Pittsburgh Medical School. Well, and what we do is we get them by telephone because -and we have never had a challenge by an advocate that a telephone conference in the hearing is any due process concern. Personally I don‟t think there is. The expert is there just to look at the cold record and respond. MS. : I would be so grateful for an appropriate expert instead of -MR. HATFIELD: Well, my suggestion is possibly -- and we‟ve done this somewhat regionally, but what about the idea of nationally all the medical experts that are in the hearing offices nationally, that they would be on call or that every ALJ in the country would have access or be able to have experts at our beck and call. pun intended. No That we could have them as medical experts. So I just throw that also. MS. PATTERSON: Who was it that was talking yesterday about the idea of having a cadre of HIV experts who would review all those cases at the point where the electronic file -MR. GERRY: I think it was me. Was it you? Can you speak a MS. PATTERSON: little bit to that point? Audio Associates (301) 577-5882 MR. GERRY: Well, Dave knows it. The concept of creating medical expert units that would be available throughout the process. well at the DDS level. So it would include the hearings as It is something that was laid out and approached --- the commissioner talked about it, has been talking about for several months. It was outlined this fall, and I think yesterday, and for that matter today, the logic of being able to get -- especially we have a new electronic disability folder system which would allows cases to be moved fairly quickly around the country to experts who could review them. It would give us a chance not to create some static group of people who would leave their real work and become experts for 25 years, but to do more what Dave is talking about, which is to get us to people who are actively treating but could take the time to look at on a computer the records and provide perhaps with video teleconferencing or through some other mechanism information in the hearing or to apply -- make decisions about the cases. So it is something that we‟re very actively looking at, and I think the interesting would be here would be -- and the most difficult question really is how you staff and organize the unit, not the logic of whether it‟s a good idea, at least not to us. I think the idea of using existing medical consultants, not only medical experts with Audio Associates (301) 577-5882 OHA or medical consultants with the DDSs, as part of that network makes sense There‟s no reason because again it‟s crucial that people be physically located at a particular place. We could take advantage particularly of the people who we‟ve been using successfully and have that expertise that we already have, but it does -- would require us, and I think it‟s been clear from -- and I wanted to ask this question later but, also to go beyond the traditional sources. That, you know, the idea of medical experts has been a relatively narrow concept, and one of the things we‟ve been increasingly aware of is that there are other people, healthcare professionals and others, who may have equally pertinent information to provide. They could also of course be contacted and networked to a process like this. So how we do that, that might require us to have as part of these expert units people who are good at finding those people and contacting those people and distilling what they have to say as well, so it‟s not just a static expertise issue. MS. PATTERSON: They have the expertise and they have the time to be witnesses, and I know -- I mean, nurse practitioners where I live and when I lived here, my daughter-in-law is a nurse practitioner, they function as physicians. I mean, they treat people. Doctors are barely looking at them when they have some certain number of years Audio Associates (301) 577-5882 of experience. I mean, they function -- unless they reach a They function like level that they don‟t know about. doctors and, you know, their evidence is really sometimes ignored. It still difficult to get in. I would say, too, you know, just as an idea to respond to the judge back there about annotating a paper copy of the listings that perhaps in this century we could get that online, and I would guess that Peter Young who maintains the ALJ website could easily do something like that. I mean, it wouldn‟t have to come from Social Anybody could, you know, interface those rulings Security. with the thing just on the computer so you could pull it up on a screen at the hearing, and it seems like it would pretty simple to do. I think telephonically, you know, there might be a little bit of a disadvantage in a physician not being able to actually look at the person. I mean, if I have an HIV client with wasting syndrome, you know, that‟s a pretty significant thing to eyeball in a hearing, that you might lose a little bit telephonically. But I think getting the expertise of somebody who really knows the area that they‟re testifying about would really outweigh that disadvantage. MS. VOGEL; I want to add a comment. Mr. Gerry, what you were saying about the -- having medical experts, and I know it‟s rare diseases with primary immune Audio Associates (301) 577-5882 deficiencies. We have like consulting immunologists because for us we have that problem that a lot of patients aren‟t diagnosed and are diagnosed very late because they can‟t get to the right doctor. So we have through our organization a consulting immunology program set up so we can get those immunologists out to those patients or to those doctors. we would love to work with you on that. MS. PATTERSON: And if there aren‟t any other So questions I‟d just like thank Social Security again just for the deep listening that‟s going on at this conference and the one in Philadelphia. It‟s just enormously refreshing to see people willing to take in information before they even put out the first set of regulations for comments. It just creates a much more of a synergistic situation than a combative one, which is a pleasure. MS. MOORE: (Applause.) MS. MOORE: Okay. We‟re going to take a Okay? And before So thanks very much. Thank you, Sarah. five-minute stretch break, five minutes. you go I need to know, is the room too warm? hands. don‟t. Okay. Okay. All right. Raise your I was sweating, and I usually Five minute stretch. (Whereupon, a short break was taken.) MS. MOORE: Okay. We moved all of the panel members to the front so that they could jump in and get in Audio Associates (301) 577-5882 the hot seat if they wanted to, so feel free if you want to. Our next speaker is Leslie Holsinger, Ph.D. from National Psoriasis Foundation. Presentation by Leslie Holsinger, Ph.D. DR. HOLSINGER: Hi. Thank you very much. I‟m the My name is Leslie Holsinger, and I‟m a volunteer. Chairman of the Board of Trustees of the National Psoriasis Foundation. I want thank the Social Security Administration for convening this meeting, and I‟m happy to be here to discuss with you today one condition in the disability listings, and that‟s psoriatic arthritis. So I‟m going to start by describing the National Psoriasis Foundation to you to give you an introduction, and then I‟ll describe some psoriatic arthritis, and then at the end I‟d like to suggest some possible ways to improve the immune system listings. On a personal note, I do suffer from psoriasis and psoriatic arthritis myself, so I do have personal experience with the debilitating affects of this disease. So let me share with you a little bit of a background of the National Psoriasis Foundation. It was founded by patients and physicians in 1968, and it‟s a patient-lead and patient-focused group. It‟s advised by a medical board that‟s composed of both dermatologists and rheumatologists. --- supported by the public. We are largely supported by public donations and also receive some Audio Associates (301) 577-5882 contributions from corporations, and we represent a community of more than five million people that have psoriasis and/or psoriatic arthritis. So our overall mission really includes three main focus areas, and our mission is to improve the quality of life with people who have psoriasis and/or psoriatic arthritis, and through education and advocacy we promote awareness and understanding of the disease and insure access to treatment for patients. Finally, we also have an effort to support research that will lead to effective management and hopefully ultimately a cure for the disease. So let me introduce you to psoriatic arthritis a little bit for those of you that may not be aware of it. arthritis. always. It‟s a chronic, progressive, inflammatory It is often associated with psoriasis, but not It affects roughly one million US adults, and as I think you‟ll see from some of my later slides it seriously impacts daily life. It‟s often either misdiagnosed, undiagnosed, or diagnosed years after it‟s initial onset. So a little bit more about the effects of psoriatic arthritis. It can infect many different parts of the body, and these include but are not limited to the hands, wrists, knees, ankles, toes, the spine and tendons; and it can cause a variety of disabling symptoms, and these include pain and swelling, fatigue, joint destruction, many Audio Associates (301) 577-5882 of the things that previous speakers have spoken about already. I mean, it‟s a disease that affects patients for many years; and although it usually develops between the ages of 30 and 50, it can happen any time and can happen in children. This is just one photograph to illustrate for you an example of how serious psoriatic arthritis can be. This is an example of the debilitating joint changes, in this case seen in a hand, that can occur in psoriatic arthritis. life. So it profoundly impacts a patient‟s quality of So for example in a national benchmark survey that the National Psoriasis Foundation recently conducted 84 percent of patients with psoriatic arthritis said it had a moderate to large impact on their daily lives, and this would involve both work and simply conducting their life; 75 percent said they lose sleep or sleep poorly because of this disease; and 69 percent can‟t do what they want to do or are unable to these things at work or at school. Let me add another note about how it affects how people are able to work. In a recent survey, in the same recent survey of 400 patients, among people not working nine percent of those were not working because of psoriatic arthritis and a full 21 percent were not working at least in part because of psoriatic arthritis. So the conclusion that you can come away with from this is that the disease can have a profound Audio Associates (301) 577-5882 ability on someone‟s ability to work. So as we discuss how to evaluate psoriatic arthritis in the context here today it‟s important to keep in mind how people treat the disease. So many drugs that I won‟t go into today are used, but the side effects of many of these drugs can be very, very serious, and there is in fact only one new treatment that‟s FDA approved for psoriatic arthritis. There are new drugs in clinical trials, but I think it‟s very important to emphasis that these drugs are treatments. They‟re not cures, and the treatment‟s affect and duration varies, and I think this sixth bullet point is perhaps the one I‟d like to emphasize the one. Peoples response to treatment is very variable. Some people respond only partially where others may respond very well, and some people respond to one treatment for a period of time and then lose their response to that treatment. So I‟ll offer a few preliminary suggestions about ways to improve the listings. So some general considerations that we would like you to consider are to continue to evaluate each case individually and to give serious consideration to the side effects of treatments. Consider how changes affect both recipients and applicants; and, like a previous speaker indicated, we would agree that partial disability may be a very important option to Audio Associates (301) 577-5882 consider. SO here are a few more specific ideas. Consider adding pain and difficulty with sleep and the associated depression that comes with the disease to the list of symptoms and signs. These are major and serious symptoms and signs, and consider adding more specificity to the listings with regard to hand, foot, and nail involvement in psoriatic arthritis. Enhance the importance of fatigue. I think again, as previously stated by an earlier speaker, right now this essentially a footnote, and this is one of the most debilitating of psoriatic arthritis. We would also like you to make sure that the immune system listings complement the other rules that relate to skin and musculoskeletal system diseases and disorders. So in conclusion, we know that the Social Security disability system is facing some serious financial and other challenges, but also that it helps millions of Americans and has for many years. We feel we‟re all in this effort together, and we look forward to working with you all to make life better for the people that we serve. On a personal note, because I always like to add a personal note, I was diagnosed with psoriatic arthritis when I was 29, and even though I have treated the disease almost constantly for 10 years my disease has always progressively worsened in its severity. Audio Associates (301) 577-5882 Treatment has been either moderately effective or effective for only periods of time, and the side effects of the medications for me have made them very difficult to use effectively and effectively long term. The fatigue and pain associated with the disease not only makes working difficult, but simply caring for my family and myself very difficult, and I worry that the day may very well come when I run out of treatment options. I thank you very much for your attention, support and consideration to these issues. (Applause.) MS. MOORE: Questions? Okay. Are there any questions? So Our next speaker will be Michelle Vogel, Immune Deficiency Foundation. Presentation by Michelle Vogel MS. VOGEL: Hi. Thank you for having me again at your conference, and I really enjoyed being at Philadelphia and here in San Francisco. And I will begin by talking a little bit this time about IDF, which I didn‟t at Philadelphia, but I wanted to tell you that IDF‟s mission is to improve the diagnosis and treatment of individuals affected by primary immune deficiency diseases through research, education, and advocacy. $2-million were invested since 2000 and 40plus fellowship and research grant applications annually. We have a 20-member medical advisory committee and clinical Audio Associates (301) 577-5882 trial management and research programs. We help 30,000-plus patients nationwide through internet, patient meetings, national conferences. We provide patient publications, and we have over 40,000 physicians and health professionals internationally, continuing medical education, consulting immunologists programs, visiting professor program, medical publications, and professional meetings. Through advocacy we finally received our first NIH research funded consortium, $12.8-million this year, and we get IGIV through compassionate care programs. We provide 10,000 in grams each year to our patients for free, and we work collaboratively with FDA and CDC on national health issues. Our long-term goals are to improve access to the state-of-the-art medical care, enhance early diagnosis, make life meaningfully better, expand scientific and medical research, and increase the strength and research and strengthen the reach of IDF. To go over primary immune deficiency diseases -- and when I was in Philadelphia I asked how many people knew about primary immune deficiency diseases. Not many people did, and I just want to look -- except for the people who were at Philadelphia, how many people here have ever heard of a primary immune deficiency disease? Great. Oh, okay. Well, the World Health Organization recognizes over 100 primary immune deficiency diseases affecting Audio Associates (301) 577-5882 approximately 50,000 in the United States. They are the result of a genetic defect that involves the immune system and its responses, and presently the exact genetic defect for each of the diseases is only known for a minority of the conditions. Primary immune deficiency disease are characterized by an increased susceptibility to recurrent, poorly responsive, severe and unusual infections. Affected individuals have abnormalities of cells or proteins of the immune system. The cells include B-cells, cells producing antibodies, T-cells, cells that coordinate the immune system‟s responses, and leukocytes and cells that fight infections. Some of the proteins are immunoglobulins, also known as gamma globulins, complement proteins, and blocking agents such as C1 esterase inhibitor. This is a list of the more common primary immune deficiency diseases, and I know that in our comments we requested that you add the list of these diseases as examples so that your adjudicators can see these diseases. Because when you‟re defining cell-medicated diseases it‟s hard to determine what they actually are, and when you see a name it‟s a little easier to determine. Most of these names you‟ve never heard of, and it‟s interesting to know that most people when you hear primary immune deficiency disease they‟ve never heard of it; but when you say Bubble Boy Syndrome they‟re like, "Yes. The John Travolta movie," Audio Associates (301) 577-5882 which is one of the more rare diseases. This is just a graph showing the difference in diagnosis of ages, and you can see that, I mean, yes, 36 percent of our population is diagnosed less than six years old; but, I mean, we have a huge percentage, 22 percent, is diagnosed over 30 years old. The time of diagnosis after symptoms, the average is over nine years, and part of that problem is that physicians aren‟t trained in these diseases, and the diseases aren‟t taught in medical schools. We‟re working on changing that, and unless you‟re in an area where there are immunologists who know about these diseases and you have these chronic infections that they test you immunoglobulins they don‟t. You go on suffering for many, many years until you finally find that right doctor that finds that diagnosis, and if you‟re in a rural area it‟s very tough. The common permanent impairments due to the delay in diagnosis is digestive function, mobility, lung function, vision, hearing, and neurological. The biggest treatment for primary immune deficiency diseases is IGIV. intravenous therapy. It‟s immune globulin It‟s made by human plasma therapy, and Most patients receive these The infusions can it is an intravenous process. infusions once every three to five weeks. last anywhere from five to seven hours, sometimes longer. Usually when you‟re younger it lasts a longer. Audio Associates (301) 577-5882 A lot of times when you‟re younger you end up in the hospital receiving the infusions because kids can‟t tell you what‟s going wrong, and so doctors need to monitor them closely. The one thing with these drugs, there are eight brands of IGIV on the market right now, and many people look at them as generic to each other and they‟re not. Each brand works different, and what the patients have to go through is a trial and error period unfortunately, and go through one brand after the other until they find the right one that has the least side effects. I say the least side effects because there is no right drug that has no side effects for a patient, and many of the patients have to take a lot of drugs with that IGIV to make it tolerable. Most patients end up getting their infusions during the work day, from nine to five, and this is important because one of the issues is can patients feel IGIV wearing off, and the answer is yes. What happens is their immune system, the immunoglobulins start getting lower and they are more susceptible to infections, and that‟s when they‟re getting sicker, and in children that‟s when you end up seeing them having more higher absenteeism. out. In the workplace they‟re If there‟s viruses their more exposed to it and So it‟s a serious situation. they‟re going to catch it. Symptoms following infusions, these are the Audio Associates (301) 577-5882 more common: fever, nausea, vomiting, cough, sore throat, shortness of breath, headaches, faintness, high blood pressure, joint swelling, chest pain, back pain, fatigue, and anaphylaxis. That‟s why it has to be monitored closely. The infusions are also done in doctors‟ offices and in the home when it‟s safe, and in the new Medicare bill it allow for home infusion now. It allows for the drug coverage. It doesn‟t allow for the administration of it, which is a problem. The top reasons why patients no longer use IGIV is because of insurance problems or that they can‟t afford it. It‟s very, very expensive. Common acute conditions patients experience, and this is one of the things that you‟re going to see. These are the types of infections that you have in your listings. Pneumonia, bronchitis, diarrhea, eye infections, urine infections, candida, malabsorption, sepsis, and the one important thing you have to understand is that these -every infection is to be considered serious in this population. Employment status of patients, we estimate about 16 percent of our patients are disabled, and about 68 percent of their activities are limited by the primary immune deficiency disease. This is a breakdown of the current health insurance sources, and you can see of the federal right now Audio Associates (301) 577-5882 15 percent are Medicare and 11 percent is on Medicaid. you can see also that most of the people are relying on But employer coverage, almost 70 percent; 64 percent of primary immune deficient patients have health insurance problems such as denial of coverage, exceeding lifetime caps, prior authorization causing treatment delays, IGIV not covered, states prefer drug lists or formularies, and policy cancellations. I wanted to go over two stories with you. When I was in Philadelphia I talked about a woman who was in the workplace who couldn‟t continue working, and today I wanted to concentrate on two children this time. about Cody. This story Cody is now eight years old, but when he was By two born he was born sick, like most of our children. years old he had chronic ear infections, and he finally was diagnosed as having an IGG deficiency. At age four years old he developed a rare bone infection which finally lead to a correct diagnosis of hypogamma-globulinaemia and Di George Syndrome, which Di George Syndrome is a very rare primary immune deficiency disease. He was spending an average of three to four times a week in the doctor‟s office, and he was put on a regimen of IGIV infusions once every three weeks and these were done in the hospital. lasted eight to 10 hours. He developed seizures, which is part of Di Audio Associates (301) 577-5882 That George Syndrome, and his mother applied for SSI benefits when Cody was four years old. He was denied and she didn‟t Within realize that she could appeal, which happens often. a year of the denial she reapplied and received another denial within 10 months, but this time she appealed. During the appeal process Cody began to regress cognitively and became developmentally delayed, and the state disability recommended that Cody be seen by one of their doctors. The doctor didn‟t know anything about primary immune deficiency diseases and ordered blood tests to see Cody‟s gamma globulin levels. Well, if you know if anything about primary immune deficiency diseases if you‟re receiving IGIV therapy your gamma globulin levels if you‟re getting the right therapy are going to be at the right level. So his level was normal, and so the doctor recommended that he be denied SSI, and that doctor recommended the denial in June, 2003. At that point during that of time his parents, Cody‟s parents, also took him to be assessed because he was having developmental problems, and in May, 2002, his IQ was 98. 73. Last Tuesday a hearing was held with an administrative judge by video teleconferencing, and it lasted 10 minutes and the judge said that this was one of Audio Associates (301) 577-5882 By August, 2003, his IQ had dropped to the compelling cases he had seen and ruled in favor of Cody receiving SSI benefits. That was four years after his mother first applied for benefits for her son, so -- and now Cody‟s mother has been told that she could expect an award in about six to eight months; and I‟ve heard that the decision wasn‟t primarily based on his primary immune deficiency disease, but based on his IQ level. So the significant factors in Cody‟s experience is that his mother is the full-time primary caregiver for Cody, the length of the process to obtain the disability benefits was over four years, the lack of the familiarity with a medical expertise on primary immune deficiency diseases throughout the disability process, and the assistance Cody will need long term. The next story is a story about Jonathan, and Jonathan was born sick and was diagnosed at two years old with common variable immune deficiency; and he was started on IGIV therapy once every four weeks, which was about a seven-hour infusion. with hyper IGE. At age 11 he was diagnosed correctly His mother worked as a nurse and continued to change jobs throughout Jonathan‟s illness because the healthcare costs kept on reaching their insurance caps. eventually she took a job in teaching because of the flexibility in here job so she could be at home when Jonathan was sick and it also had better health insurance, Audio Associates (301) 577-5882 So but it was a 50-percent pay reduction. Luckily there was a lot of family support to be there to help out. But the case is interesting because when Jonathan was 17 his mom decided, you know, "What‟s going to happen when Jonathan turns 18 and ends up off my health insurance? And what happens if Jonathan goes to college and we can extend the health insurance to 23 years old, and he makes it through college but he hasn‟t been able to hold down a job? He‟s been in the hospital a lot. What if he What‟s his can‟t be employed? future?" What if he can‟t be insured? So she decided to apply for SSI benefits for Jonathan, not knowing his employability or insurability, and Jonathan was 18 when he was denied his application. His mother contacted an advocate on the list provided by Social Security, and the attorney never heard of primary immune deficiency diseases and told her to forget about appealing the case. So Jonathan‟s mother decided to become Jonathan‟s advocate and do the work herself. So she filed all the paperwork, got the letters from her son‟s doctors, and she went through the process. The SSI person told her that she needed a hearing before the administrative law judge and said to get an attorney. own. She and Jonathan decided to continue on their The judge received the file and approved it without a When she didn‟t receive any additional information Audio Associates (301) 577-5882 hearing. about the award she called and was told that the case was being audited, but everything worked out in the end, and the whole process took one-and-a-half years. Jonathan is now 21 years old and is in college, and the SSI benefits has helped him with school because he has frequent setbacks and through the college he has a counselor, and when he ends up being hospitalized the counselor is able to get him extensions for work so he‟s not failing out of college. through her insurance. His mother continues to cover him So the question is, I mean, we talked about this, is that what happens once Jonathan finishes college? One of the things in his program, he‟s a He needs to have an internship, but He hasn‟t been able to computer science major. he hasn‟t been able to hold a job. do his internship. So will he be able to hold down a job, So we don‟t know what and will he be able health insurance? assistance Jonathan will need in the future. So some of my recommendations, and these are the same recommendations I made in Philadelphia, is to train the Social Security Administration adjudicators to know what primary immune deficiency diseases are and use a list of more common diseases to help recognize them, but know that there are other diseases that fall under this category. Consult with immunologists trained in primary immune deficiency diseases throughout the disability process, Audio Associates (301) 577-5882 especially during the hearing process. Also I wanted to mention when dealing with children there‟s the issue of being born with the disease and having the impairment immediately versus it coming out later, and a lot of these children are going to come out with -- are going to become symptomatic later on. shouldn‟t be limited. So the congenital immune deficiencies I mean, if you‟re going to keep the listing as congenital realize that it‟s going to -- there‟s going to be a delayed onset of clinical symptoms. then that should be changed. If not Understand that primarily immune deficiency diseases are marked by recurrent, poorly responsive, severe, or unusual infections. These infections Immune are a result of the defects in the immune system. deficiency should be suspected in a person of any age that has more than one pneumonia per 10 years of life, chronic sinusitis requiring antibiotic therapy, chronic bronchitis without history of smoking, increased number of ear infection after age two years, chronic diarrhea lasting weeks to months, or recurrent bacteria infections. Infections may occur as frequently as ever two to three months. Affected individuals may also have autoimmune diseases and cancer as a result of their immune system abnormalities. Every infection must be considered a serious infection for this population since the immune system is Audio Associates (301) 577-5882 compromised, and when it comes to going to workplace -- and this is a serious problem. When these patients end up on disability they‟re going to be doing better because they‟re going to be away from infections. They‟re going to be on their therapy, and if you put them back in the same setting they‟re going to go down, so -- and in cases of children I don‟t know what the answer is. In the case of Jonathan I think that there has to be a period of time where you have to see if the child is going to -- how he‟s going to do in workplace and if he‟s going to survey, and what‟s going to happen in terms of insurance. There are a lot of discussions about, you know, a lot of these children may fall into the high risk pools in the states, but all those have caps on them, and IGIV therapy you‟ll hit that cap immediately. So it‟s a serious problem, and in terms of Medicaid with like Cody as example, if he went onto the Medicaid system his doctors aren‟t going to continue to care for him. So I don‟t know what the answers are in those situations. Here‟s my information to contact me. I have copies of the presentation on the back table, and I want to thank the Social Security Administration. I know Bill Anderson has already contacted me about working together to set up a video to train adjudicators, which is wonderful, and I look forward to working with you, sharing any of our Audio Associates (301) 577-5882 expert immunologists with you. (Applause.) MS. MOORE; Okay. Thank you. We‟re going to continue I with Steven Taylor from Sjögren‟s Syndrome Foundation. apologize. Does anyone have any questions? Okay. I apologize for that. MS. DOAK: I‟m Bonnie Doak. I‟m with the Immune Deficiency Foundation and I‟m an adult patient, and I just wanted to respond to what Michelle had commented on about the -- I guess the verbiage. I‟m not familiar with it, that I guess it says about congenital immune deficiencies, and many people are -- do go many years. was one of those. I was diagnosed at 39. I I was all those years, and I was told, you know, it‟s emotional, mental; and I lead a support group and I have over 1,000 people, members, and this is really a common story. So I think there were people to be diagnosed much later, and so I think it‟s really important if it is saying congenital that -- you know, to watch the verbiage on that and possibly it would need to be changed. MS. MOORE: move on. Peters. Anybody else? Okay. We have to Steven is not in the room. Sorry to catch you off guard. We‟ll move on to Duane Lupus Foundation of American, Inc. Presentation by Duane Peters Audio Associates (301) 577-5882 MR. PETERS: Gee whiz, I had this little bit already worked up about being the last person, so I can‟t do that. Oh, well. Thank you very much. I appreciate the opportunity to present, and I also want to thank the Social Security Administration very sincerely for inviting us to participate in this meeting. I think that I probably will spend about 20 percent of my time during the course of the day dealing with this very issue. My position in the foundation is I‟m the Vice President for Advocacy and Communications, which means I handle both the government relations and relationships portion of our business as well as with the communications and helping to educate both the public, policymakers, and physicians about the many manifestations and symptoms of Lupus and it‟s impact on our society. I have to say that I probably several times a week -- I receive call from a very distraught, frustrated and in many cases individual who is sort of at the end of their rope because they have been trying desperately to qualify for disability because they aren‟t able to work any longer, their healthcare benefits have run out, and they really have no way -- both no income and no healthcare. are at the end of their rope. So they really So I do appreciate the I seem to opportunity to have an opportunity to speak here. be kind of doing a stereo thing here. My presentation today is really going to have Audio Associates (301) 577-5882 four distinct parts, and I promise you that I will be very short and distinct. The first part I will have very brief overview of what is Lupus for those of you who are not familiar with the disease. The second portion of my presentation will be on the specific immune disorder regulations and some of the suggested improvements and refinements that could be made to those specific sections that apply to Lupus. Part three of my presentation I will respond to the specific questions that you‟ve posed to us in the materials that you gave us in preparation for today‟s presentation, and finally I‟ll end with a few summary recommendations on things that are necessarily in parts two or three. part. First of all I‟d like to start out with a brief overview of Lupus. It is a disease of the immune So with that I will go ahead and begin the first system, and this is a disease where the immune system does not function properly, and there is a lot of confusion about what Lupus is and what Lupus is not. first of all with what it is not. I want to start out Contrary to my fine friends at the Arthritis Foundation who would like to say that Lupus is a form of arthritis, that is incorrect. is a disease of the immune system. Lupus It does have arthritic components, but it is itself an autoimmune disease, and it is not cancer. I think that there is a lot of Audio Associates (301) 577-5882 misunderstanding about Lupus. We did a survey of the public. We do it every year, and basically about 60 percent of the people heard of the word Lupus. They understand that there‟s a disease called Lupus, but only about 20 percent can reflect any meaningful, accurate information about the disease. is the opposite of AIDS, and AIDS as you know your immune system is weakened and cannot fight of infections. In Lupus It your immune system is overactive and you have to administer immunosuppressants to suppress an overactive immune system. Basically as I said it‟s an autoimmune disease. It‟s the body attacking itself. It is the prototypical autoimmune disease, and by that we mean it is sort of at the basis of all autoimmunity. I think Virginia had talked a lot in her presentation about the many different autoimmune pathway. diseases and how they have a common Well, many of the things that you will see in It other autoimmune diseases you can actually see in Lupus. can manifest itself in many, many different ways. The immune system normally protects the body by producing antibodies or proteins that attach and destroy foreign invaders such as bacteria and viruses. exactly what it‟s supposed to do. That‟s But in people with Lupus the immune system for reasons that we don‟t understand at this time -- we sort of know what is happening, but we don‟t Audio Associates (301) 577-5882 know why it‟s happening. The immune system produces antibodies that target the body‟s own healthy cells, their own DNA, which can lead to tissue damage, organ failure, disability, and unfortunately in about 10 to 15 percent of the cases premature death. That doesn‟t necessarily mean that people with Lupus die in a very short period of time, although some do. But most people who have Lupus will lead Not a normal a very normal life -- life span I should say. life, but a life span. But there is a small set of the They population that unfortunately will de prematurely. won‟t live to their normal life span. Lupus can affect virtually any system of the body, and it can present itself in many different ways and many different forms. It can come across as being very, very severe and in other people fortunately it‟s a very, very mild disease. It typically affects the skin and the joints, the muscles, the blood and blood vessels, and other major organs including the kidneys, the heart, the lungs, and the brain. people. You‟ve heard this before from a number of Some individuals will Other It‟s very unpredictable. have regular and frequent flares of disease activity. people will only have an occasional flare up that will be relatively mild, and some people will have an initial flare of the disease and never have another episode of disease activity again. Those people unfortunately are very rare. Audio Associates (301) 577-5882 The frequency and severity of the disease activity which we call flares does indeed vary widely, and I think that that is one of the points that I would like to make a little bit later on in my presentation about the sporadic and unpredictability of the disease. Unfortunately my lovely slide does not seem to be working on this computer. I don‟t know what that does that. Gee whiz. It worked That‟s the earlier today. I don‟t quite know. second half of it. What you would normally see up there is a bar graph that talks about the percentage of people who have different manifestations of the disease, and I‟ll just sort of read them off here. Most of the people with Lupus will have achy or swollen joints. They will have extreme fatigue, but I As heard several people talk about the fatigue part of it. Virginia mentioned early, this is just now, you know, feeling tired or exhausted. just will not function. up out of bed. This is a case where your body You can‟t even get It shuts down. In many of the extreme cases these people They just are just down for the count for a long time. cannot function. Anemia is often very much a part of Lupus, pleurisy, pains in the chest, skin rashes, hair loss, Reynauds phenomena where your fingers turn blue. The other thing, too, is a lot of people with have very severe, debilitating skin rashes with Lupus. Audio Associates (301) 577-5882 These skin rashes, some of the more typical ones we call the butterfly rash which goes across the face. But for those people who have Discoid Lupus, these can be very severe open sores on the neck, the scalp, the face, and even though they may not be totally disabling the prevent probably people from maintaining employment because no one is going to want to work with them. You all remember the prejudice that used Well, if you have somebody working to be out there for HIV. your office who has, you know, open sores and severe Discoid Lupus, you know, the reality is the employer is basically going to find some excuse to terminate that individual. so disappointed my colorful little slide didn‟t come. Here we go. Lupus. About 1.5 million Americans have I‟m That‟s a number that‟s in great debate, and if you ask the National Institutes of Arthritis, Muscular, Skeletal, and Skin Diseases they‟ll tell you that there are 239,000 people in the United States that have Lupus. That‟s because they‟re only counting people who have systemic Lupus who meet the ACR diagnosing criteria, which in itself needs to be revised. 90 percent of those people who have Lupus are women, although men and children also can develop the disease. Eight out of 10 cases develop among women ages 15 to 44, and I‟m going to emphasize that point because this is a disease that primarily strikes young women, and people who are disabled by Lupus are typically disabled at a very young Audio Associates (301) 577-5882 age. There is a higher prevalence among African American, American Indians, Alaska Natives, Pacific Islanders and Asians, and in addition to that there is a good bit of growing evidence that this is a disease that is much more prevalent among people of Hispanic origin. Okay. disability with Lupus. Let‟s get right down to the causes of Mostly it is as result of mobility, joint pain, joint swelling, limited range of motion and difficult of motion. People are just simply not able to I spoke about the fatigue. move and function properly. Fevers and malaise, Virginia also used the term that I like to use quite often, is that it‟s like having a very extreme case of the flu that never goes away. extreme cases of flu. We‟ve all had very We know how lousy that made us feel. Imagine feeling like that 24 hours a day, seven days a week, 365 days a year. Also under-recognized in Lupus is One of the cognitive dysfunction or what we call Lupus fog. things that can happen in Lupus is there is swelling in the brain that causes people to not be able to -- they‟re not mentally disabled in the sense that they are unable to communicate, but they are lost. I mean, it‟s almost like Alzheimers in a way where they‟re just not conscious of who and what is around them. Photosensitivity also is a Some people are not able to be disabling function of Lupus. exposed to both the sun and ultraviolet light, meaning Audio Associates (301) 577-5882 fluorescent lighting which often is found in the work setting. Renal failure or cardiopulmonary disease, basically organ failure, preventing them from being employed. In 2000 we conducted a survey of our members. Now keep in mind that our members probably are in the more severe scale of the patient population, but that does give you an idea of what is happening in Lupus, and these are people that responded to our survey. We sent out about Close to 3,000 40,000 surveys through our newsletter. responded. We randomly selected 1,100 of them and calculated them; 28 percent of them were on disability at the present time. I don‟t know if that is all Social I just don‟t the answer to Security or private disability. that. We didn‟t ask that, but there are a large percentage of them are disabled; 35 percent have said they have received disability benefits at one time; 17 percent had stopped working for a period of time as a result of the disease; 38 percent had stopped working permanently because they just couldn‟t work any longer; 18 percent had cut back on their hours; 12 percent changed their jobs to accommodate their illness either to less stressful job or to a part-time job or something like that. of them nothing has changed. Fortunately for about a fourth Their life is going on. I‟d like to now discuss some of the specifics Audio Associates (301) 577-5882 in the immune disorder regulations that I think can be improved. 14.00(B) the paragraph two, it says "A longitudinal clinical record of at least three months demonstrating active disease despite treatment during the period with the expectation that the disease will remain active for 12 months is necessary for assessment --." You know this, right? You got have the Well, part of disease, expect that disease for 12 months. the problem is that Lupus is unpredictable, and you‟ve probably heard this many times, but let me reinforce it. The health status of people with Lupus changes all the time. It‟s not so much that they may not have periods where they can work, but the fact is that they are sick a lot and they are often -- because they are sick a lot they are often terminated and no one will hire them. Many times when they reveal the fact that they have chronic incurable disease like Lupus their employer finds some excuse to get rid of them. I have dealt with a number of people who called us and asked us for help for dealing with unreasonable employers. Here‟s another point. this paragraph here. You know this part, I It‟s in the introductory part. think it‟s really -- it‟s constitutional symptoms. Here is what I wanted to discuss here where they get to say the science of severe fever -- or, excuse me, "Severe fatigue, Audio Associates (301) 577-5882 fever, malaise, weight loss, and joint pain, and stiffness." The reality of the situation is that most people with Lupus are not going to have all of those constitutional symptoms, so that the "and" really needs to be an "or". Frankly if you‟re on Lupus one of the ways that it is treated is with high dose corticosteroids, which does not result in weight loss, but quite often results in significant weight gain. If you‟re a person with a disability coming into, you know -- excuse me, with Lupus coming in to apply for Social Security disability and someone sees you walking in there big and heavy, you know, right away the prejudice is going to be this is lazy slob, and that is a very unfair assessment because these people through the medications oftentimes gain significant weight. So that was one specific thing, but I think if there is no else that you do for people with Lupus making those constitutional symptoms not be in totality I think, making them "or" instead of "and", I think you will have a significant improvement in the regulations. Specifically in the introductory remarks in the Lupus section it says "Systemic Lupus Erythematosus. This disease --." Forget this part here. This is what I‟m suggesting that you add, "(frequently but not always) characterized clinically by constitutional symptoms and signs (e.g., fever fatigues, malaise," yada, yada, yada, Audio Associates (301) 577-5882 "and frequently anemia, leukopenia, or thrombocytopenia. Immunologically an array of circulating serum autoantibodies can occur, but are highly variable --." What I would like to suggest in here is the addition of "frequently but not always" characterized by these symptoms. disease. Again, not people -- it‟s a very variable People with Lupus are not going to have all of these symptoms at the same time, and the same with the "and frequently". come up here. I don‟t know if there is another word that Occasionally often may include, I don‟t know, but the "and frequently" sounds like, you know, this going to happen to a lot of people all the time. Now you and I But you know sitting in this room probably understand that. you get some judge out there or hearing examiner who is looking down here trying to be a purist, and he‟s going to say, "„And frequently.‟ these things. Well, you know you don‟t have all You know, therefore I don‟t think you‟re going to be able to do that." Specifically here again in paragraph seven, "Generally the medical evidence will show that patients with Lupus will fulfill the 1982 revised criteria for classification for Systemic Lupus Erythematosus of the American College of Rheumatology." I will tell you this, that there is a committee at the ACR that is looking into the revised Audio Associates (301) 577-5882 criteria and is considering revising them. Why? Well, because many of the people with Lupus do not fulfill the ACR standard of meeting four or more diagnosing criteria. the diagnosing criteria are not the same as symptoms. Now For example, individuals who have severe disabling joint pain and swelling may indeed only meet three of the diagnosing criteria and therefore will not have a diagnosis of Lupus, but they‟re being treating for Lupus because they indeed have the disease. So again one of the things that you could do would be to change the "will" fulfill the criteria to "may" fulfill, or "usually but not always." Some sort of qualifying so that it doesn‟t say that if someone doesn‟t meet the four or more diagnosing criteria as established by the ACR that the indeed do not have Lupus and therefore don‟t qualify for disability under this regulation. Systemic Lupus Erythematosus, in the specific part about Lupus there in 14.02 there are a number of different disorders listed there, references, and in the skin reference which is number nine what I would like to suggest there is that neither this 8.00ff or the skin reference makes any reference to photosensitivity. There are some people with Lupus who are so photosensitive that they literally cannot be exposed to any daylight. Being in this room would be a problem for them with the windows open. We have some of these folks come to our meeting. Audio Associates (301) 577-5882 We have to make sure that it‟s in a room where there are no windows or that the drapes are closed, or that there are no fluorescent lights in the room, because some of these folks it will send them off into a flare. As you all know, that fluorescent and in many cases sunlight is often found in a work setting. So could you add, consider adding, "or severe photosensitivity" to the end of this skin involvement, number nine, or somewhere in that 8.00 put some reference to photosensitivity. Because again, I think you are going to see a number of people are disabled, and it may be that they have that photosensitivity but otherwise they‟re healthy. But the fact is that, you know, they may indeed not be able to go to work because -- you know, because of the lighting situation. I‟ve had parents of children call and say they tried to get the schools to put lights, UV light sleeves in their schools, which they refused to do. Okay. I‟ve beat this one to death again. I think you know it‟s So again if it could This is the "and" and "must" part. rare that persons would have all this. be changed to read "Documented constitutional symptoms and signs of fever --." Excuse me. "Severe fatigue, fever, malaise or weight loss," and "At least one of the organs/body systems should or may be involved --." You know, the "must" is again a pretty definitive term there. You know, "To at least a moderate level of severity." Audio Associates (301) 577-5882 I like that term, but it could be improved. Okay. Here are your questions. "Are the factors that would help us evaluate the disability claims that we could add or change?" I think again there needs to be included some language in your introductory part about the unpredictability of Lupus and the fact that it varies from person to person and that could it indeed vary even within a particular case of Lupus. Recognize that people with Lupus will not -- oops, sorry -- will not always be disabled, but nonetheless will be unable to be gainfully employed because they are sick frequently. I‟m not talking What about people who just have Lupus deserve disability. I‟m saying is that those people who are sick all the time but they may not be sick consistently for 12 months, and especially when they go for their appeal. You know, a lot of times they‟re going to go into their appeal and they‟re going to -- you know, they‟ll be bringing in lab work that is done right then. Well, you know, at that point in time their labs may look pretty good, but that doesn‟t mean their labs are going to look good a month from now or five weeks from now or five months from now. recognition of that. The business about adults and children, I think actually the regulations are pretty good with the suggested improvements for both adults and children. Audio Associates (301) 577-5882 They So there needs to be some are pretty much are the same. that‟s a problem. I don‟t necessarily know that "What are the variations in favorable and unfavorable responses to treatment?" pretty big. The variations are For some people, you know, if the doctor writes, you know, the patient is responding favorably to treatment that may mean that, you know, they‟re in remission. They don‟t have any signs of disease activity. They‟re doing pretty well. For All their labs look good. others, though, responding to treatment means that they are able to function between significant disease flares. We are able to extend the period between the time that they are sick and the time that they are well. For others it may They can go to that they are at least now able to function. the grocery store. You know, they may be able to, you know, But as far as do household chores, that kind of thing. holding down employment, they would not be able to do that. Again, doctors are often only treating the symptoms. There is no cure for Lupus. We can only treat the symptoms, and we treat it with a lot of heavy-duty medications, very toxic, high-dose corticosteroids, immunosuppressives, antimalarials, yada, yada, yada. drugs themselves are often very disabling. number of other secondary health problems. These They can cause a I talked about weight gain, but in addition to that if you‟re issuing highAudio Associates (301) 577-5882 dose immunosuppressives you‟re making the patient susceptible to infection, osteoporosis and bone loss, a whole host of other problems with the therapies. What should you add? memory loss or Lupus fog. Possibly short-term This is a problem for many, many patients, and again it‟s a problem with disability in the sense that they can‟t perform work. We have a lot of people who are involved in our organization that we have to really work very closely with in order to get them to absorb the things that we‟re telling them because they have this cognitive dysfunction. They‟re not mentally retarded or But, you impaired in the sense that they can‟t comprehend. know, you ask them five minutes down the road and they‟re not going to remember what you talked about. Photosensitivity to sunlight, you know, I talked about that pretty much. Constitutional symptoms. Okay. Cognitive dysfunction or short-term memory loss, and I talked to you about the "and" and the "or". again. "What is the effect of treatment on the length of disability?" Well, treatment can have little or You know, there are I‟m not going to go over that no effect on the term of disability. many variables. Again, because we can keep the symptoms under control it doesn‟t mean we can actually control the Audio Associates (301) 577-5882 disease. The disease is subject to flare at any time. Obviously as you Stress is a significant trigger for Lupus. heard some other people say today and yesterday with the HIV panel there‟s a lot of people think they feel good and they start going back to their routine, and the next thing you know the disease has flared and they‟re out for several months again. Until treatments can actually get to the cause of Lupus rather than the symptoms of Lupus there really is no such thing as total remission. can be disabling and toxic themselves. that one, as much we can do. "What should we consider when reviewing whether a beneficiary with an immune system disorder continues to be disabled?" Well, again, I think, you know, A chronic illness I The treatments I pretty much gave it is a chronic, unpredictable disease. does not go away simply because a person has good health. think that there really needs to be a long-term, long-term period of time without any kind of disease activity before we would even want to consider whether or not they should go back to work. However, there are a lot of people They feel good enough. They who want to go back to work. feel that they are able to work, but the reasons that they don‟t go back to work or don‟t push that issue is that they obviously -- and you‟ve heard this before many times -- is they don‟t want to lose their health benefits. Audio Associates (301) 577-5882 If we can figure out a way that people could go back to work and not have to go through again a three-month, four-month, fivemonth process to requalify for disability and get back on Medicare then I think, you know, we‟re onto something. But, you know, until we can address that particular problem no one is going to want to give up their health benefits, because without it, you know, many of the panelists said the same thing, they would die. Everybody says here we got to train the examiners and the judges. Well, you know -me, too. People with Lupus won‟t always look sick when they show up for a hearing. You know, it is a hidden disability. It is a hidden disease. They don‟t look crippled in many cases. They don‟t look like they‟re sick, but they are sick from the inside out. They will not continuously be ill and they actually can have periods where they‟ll be able to function. They may be able to function, but they may not be able to sustain that activity. I think one of the things that you look at is their ability to be lifting, standing, sitting, or bending. Well, you know what? I can tell you right now I can probably do -- bench press 100 pounds here right now, one time, maybe twice. I don‟t know that I could bench The same way with people with They may press 40 reps of 100 pounds. Lupus. They may be able to go to work for a day. be able to go to work for a week. But in many of these Audio Associates (301) 577-5882 cases they‟re not going to be able to sustain that activity, and they‟re going to be right back where they started from. They may have short-term memory loss and be photosensitive. Let me tell you a little story that came to me yesterday -- or Tuesday. in California. dysfunction. I had a lady call me from here She has cognitive She has Lupus. She bought a house several years back and had it certified for all sorts of things that, you know, you want to have it certified when you buy a house. Turns out this house has significant mold problems, and she got in with a very unscrupulous real estate agent and a contractor who certified the roof and so forth, yada, yada, yada. Anyway, long story short is she has to sue them to get this dealt with because the unscrupulous contractor who inspected the roof did not agree to go to arbitration. go to Court. She has to go to trial. So she has to Well, this lady suffers from cognitive dysfunction and she gets very flustered, she gets very -- and she just can‟t go to Court, and she was calling us to see if there are any exceptions that, you know, would force her not to have to go to Court or do some other way of presenting her testimony because of the short-term cognitive dysfunction that she has as a result of Lupus. And of course, finally, they will not have all the constitutional symptoms, especially at the same Audio Associates (301) 577-5882 time. So you‟ve sort of heard a common theme here among all the people that we‟ve talked -- that have talked today and yesterday about these problems, that they‟re not always sick, that they may not have all these symptoms at the same time, that‟s it unpredictable and so forth. So I think if those changes could be somehow incorporated into the regulations I think you‟d do a great job of improving things. Finally I‟d just like to remind everybody that on the back of the thing here I brought our new magazine. off. We‟re very proud of it and we love to show it We hope you‟ll take a copy of it, and I also have copies in the back there of my remarks along with some posters, although the one that I have out there is not this particular poster. But please take the information and If you need some additional we‟re very glad to help you. information here‟s where you can get it off of our website, or if you need any specific answers to anything specific about Lupus just send your little email to info@lupus.org and we will be happy to respond. (Applause.) MS. MOORE: MR. PETERS: can ask. Okay. Go ahead. MS. SCHOENBERG: This is Nancy Schoenberg Questions. Barry has a question. Or you Thank you. Audio Associates (301) 577-5882 from Social Security. My question is about continuing disability reviews given that as you said Lupus is an incurable disease. I think yesterday we heard some talk about they‟re not continuing disability reviews in HIV cases. Would you advocate dropping continuing disability reviews for Lupus patients and/or have you had any problems with them? MR. PETERS: attention as an issue. That‟s not been brought to my I don‟t say it doesn‟t exist, but I have not really heard anybody say, you know, that they‟ve been on disability a long time and, you know, now they‟re no longer qualified. That hasn‟t come to me. I don‟t say that it isn‟t a problem, but it‟s never been addressed as an issue that has been of great concern in the population of the patients. MR. EIGEN: Okay. Well, I have two It questions, and they‟re actually for the whole panel. kind of goes with what you said about how these are common themes. I have two common-theme questions. First a very specific one. I noticed, Duane, that you said that you kind of like the provision in the Lupus listing which actually appears in all the other immune system listings for a person with a variety of signs and symptoms and involvement of multiple -- wait. Let me read this right -- two or more organs/body systems, and at least one of the organ/body Audio Associates (301) 577-5882 systems must be involved to at least a moderate level of severity. I thought I heard you say, "And I kind of like that language." MR. PETERS: severity. Well, yeah. A moderate level of In other words, it‟s not saying that it has to be real severe and real disabling, but at least that there is some involvement. I think that, you know, to be honest with you, the -- many people with Lupus are going to have multiple symptoms of the disease and multiple organ systems. Not all of them, but many of them will. MR. EIGEN: Well, my question was is that a If meaningful thing to you, and I guess your answer is yes. we say at least a moderate level of severity ---. MR. PETERS: Yeah. I mean, that‟s to me -- I‟m not a lawyer, and so maybe one of the lawyers may disagree with that. But to me that makes it enough latitude that, you know, it‟s not spelling out real severe, you know, great severity or something along that. level of severity sounds it. To me, a moderate You know, there is evidence I that the organ system has been impacted in some way. mean, that‟s my interpretation of it. like it. That‟s why I seem to I don‟t know how everybody else feels. MR. EIGEN: So how do the rest of you feel The same words Well, about it? It‟s in all the other listings. are in all the other listings in this body system. Audio Associates (301) 577-5882 I‟m putting you on a spot. MS. ELIZONDO: Well, we haven‟t done our presentation yet, but I‟ll go ahead and say that arthritis - the inflammatory arthritis has the same kinds of, you know, prevalence of fatigue and pain and other disability that all these other diseases have. all immune or autoimmune. I mean, I guess they‟re So to be able to say it‟s moderate in a couple of places is probably -- it‟s a much better than to say you have to be severely disabled by this one thing or you have to be severely disabled by these four things. Just because what happens is it‟s cumulative of what -- that‟s where you get the disability is cumulatively being in pain and cumulatively getting wiped out, fatigue. MS. WONG: disability. The exponential, but multiple Exponential thing. MS. ELIZONDO: Yes. Just it starts to layer itself and instead of just having just one disease, you know, there‟s not just one problem that characterizes the disease. It‟s you can‟t just say you have to be severely disabled with this one thing. MR. EIGEN: way. Okay. Well, that‟s a good segue I don‟t know how familiar Here‟s my other question. you are with the HIV listing in this body system, but the HIV listing at the very end -- this is true for adults and children -- has two listings. One of them -- I‟ll start Audio Associates (301) 577-5882 with the last one first. following words. The last one includes the I‟m skipping the first part of it, but it says, "Repeated manifestations of HIV infection," and I‟m going to skip ahead -- that don‟t meet the criteria earlier of course, "Resulting in significant documented symptoms or signs. For example, fatigue, fever, malaise, weight loss, pain, or night sweats and one of the following at the marked level." This is for adults. It‟s different for children, but it‟s the same idea, "Restrictions and activities of daily living, difficulties in maintaining social functioning, or difficulties in completing tasks in a timely manner due to deficiencies in concentration, persistence, or pace," which sounded exactly like what you were talking about before. That sounds to me like a provision that could be useful for evaluating other kinds of immune disorders. Is that -- I‟m putting words in your mouth. MS. WONG: Concentration? MR. EIGEN: MS. WONG: (Laughter.) MR. MR. EIGEN: : What paragraph? It‟s 14.08N. It‟s right here, I‟ll show it to you. It‟s my -- I‟m demonstrating. Can you say that again? and then there‟s one right before it that -- am I losing you? It‟s in the backs of your book in the HIV listing if Audio Associates (301) 577-5882 you look for it. If there were pages numbers I could tell you. MS. good wording. MS. real specific to HIV. MR. EIGEN: Right, but that --- changes. : This one right here though is : Yeah. This is good. This is (Multiple conversations.) MR. EIGEN: would be a good thing. MS. MR. EIGEN: : Yeah. That would expand what -But I mean something like that And now that you‟ve all got it It‟s obviously very out, if you look at the one before it. specific to HIV, but it‟s one for people who get sick with different things. MR. PETERS: MR. EIGEN: --- meningitis. Right. I mean, you‟d have to put in different words, but it would be something like that. MR. PETERS: I think, you know, the daily Again, the fatigue, function of life, you know, for people. the inability to move, the exponential kind of problems, all these things layered on top of one another really do -- any one of them by themselves isolated may indeed not be disabling, but layered on top of each of other they are all unable to perform even daily routine let alone employment. Audio Associates (301) 577-5882 MR. EIGEN: And the thing about it is this doesn‟t say this, but other words in our regulations say you don‟t have to be like this every minute of every day of the entire year. You can wax and wane as to -MR. PETERS: a tremendous help. MR. VOGEL: Barry, and the other thing and I agree. I think that would be for the primary immune deficiency diseases, just to make sure, when retesting people on the levels, I just want to stress this because it happens over and over again. When the patients are on IVIG therapy their levels are going to be at the right level and, I mean, we‟re having this happen with even the states with Medicaid to get prior authorization for the continuation of IVIG treatment. want to see the levels go up. They They want the patients off the drugs and have patients drop their levels to see that they actually have the disease still, and so -- I mean, it‟s crazy. MR. EIGEN: here. Now, there‟s definitely themes We heard the same thing from the HIV guys yesterday. They were talking about their T-cell counts and their viral loads, and sometimes those things appear normal or practically normal, but they‟re still very sick. same idea. MS. VOGEL: Yes. Because, I mean, without It‟s the Audio Associates (301) 577-5882 the IVIG therapy the levels will not be there, and it‟s life threatening. MR. PETERS: comment? Can I make just one other Since I got out of order here I got flustered and I didn‟t have my notes in front of me, but one other thing I want to mention. Somebody had said yesterday, and I -- this I heard somebody say that was the first I‟d heard this. they‟re considering, you are considering, allowing physicians to present expert testimony via teleconference. Did I understand that correctly, or did I misinterpret what somebody was saying? MS. : It was a suggestion of somebody. That was a suggestion? I got to MR. PETERS: tell you, that would probably help because, you know, we had heard some people earlier saying about the physicians being difficult to get in touch of. But if we knew, you know, if we could work arrangement with the patient‟s doctor that at 10:00, you know, there‟s going to be, you know, a hearing for this appeal and, "Doctor, could you be available via teleconference at 10:00 to answer the examiner‟s questioners?" I think that that would go a long way to making the system both fair and more efficient, and I would wholly support that. MS. MOORE: Are there any other questions for Duane Peters or any of the panel members at this time? Audio Associates (301) 577-5882 Okay. I would like to introduce to you Steven Taylor from Sjögren‟s Syndrome Foundation. Presentation by Steven Taylor MR. TAYLOR: Thank you and, Duane, thank you for bumping ahead of me there. MR. PETERS: very flexible. MR. TAYLOR: I thought I was going to be That‟s quite all right. I"m between you and lunch, but I believe there‟s one speaker after me, but I will be somewhat brief. My presentation is actually back on the back table as well if you would like to take copies. Taylor. I first want to introduce myself. I‟m Steven I‟m the National Executive Director for the In Philadelphia Dr. Fred Sjögren‟s Syndrome Foundation. Vivino spoke for us who is our chair of our Medical and Scientific Advisory Board. So I am actually presenting his presentation that I helped worked with him to put together, which really won‟t do it justice as Dr. Vivino has since I‟m not a medical expert or healthcare professional. So, but I will run through our presentation and answer any questions that I can answer, and for those that were in Philadelphia, I think Dr. Vivino did a wonderful job explaining his patients and their disease status and how he works through their disability claims with them. First for those that are not familiar with Audio Associates (301) 577-5882 it, Sjögren‟s Syndrome is a serious and prevalent It‟s the second most common autoimmune- autoimmune disease. rheumatic disease, and I was privileged to see that in your review from Philadelphia you did list that as one of the things that you all learned at that seminar back in December, and we appreciate that. It‟s five times as frequent as multiple sclerosis, which shocks most people when they hear that statistic. An estimated 4-million Americans are affected by Sjögren‟s Syndrome, 90 percent of which are women, mostly diagnosed around the age of 50 years old on average. Five to 10 percent of Sjögren‟s patients We‟re not sure why actually develop non-Hodgkin‟s lymphoma. that is, but we are working on research to figure that out and hopefully help the Lymphoma Society as well figure out how we can help all lymphoma patients as well, and obviously Sjögren‟s Syndrome is very disabling. In your slide which you probably can‟t see as well here, Sjögren‟s affects many aspects of the body and you can read this at your leisure. But it obviously affects everything from the eyes and mouth, which is the biggest manifestations, but it affects all organs since it‟s systemic dryness, and I‟ll let you look at that at a later time. A few things that I‟d like us to recognize as we begin is that Sjögren‟s Syndrome affects many organs, as Audio Associates (301) 577-5882 I just said, in body systems, not just the eyes and mouth. Sjögren‟s patients have recurring and unpredictable flares as we‟ve said about most of the autoimmune diseases. Sjögren‟s adversely impacts the work productivity as well as well as their personal life, and then work environments can exacerbate the disease symptoms. This cartoon illustration kind of shows that all Sjögren‟s patients are not alike and often look fine, and yet they are living with the chronic illness which is very disabling and difficult to accept for them. What Dr. Vivino did for the Philadelphia presentation was we put together three very different patients for you to see and see how they present differently among all three. Each person with different symptoms, their disease course and ramifications vary, and each has their own specific work-related issues. Patient A, which we‟ll call sicca, is a 50year-old woman who is a leading company manager. She‟s expected to travel, give presentations at meetings, and meet colleagues and clients for dinner, et cetera. Her main symptoms and her manifestations of Sjögren‟s Syndrome are severe dryness, systemic dryness, eyes, mouth, nose, lungs, throat, ears, GI system, et cetera. The repercussions of that dryness for those who aren‟t familiar with Sjögren‟s is her vision is Audio Associates (301) 577-5882 obviously severely effected. She must put in eye drops every 20 minutes during presentations, during her course of the day, which causes her not to be a wonderful presenter. As well as she can develop corneal ulcers, which are disabling and can often cause blindness. Eye sensitivity to the light, which is very difficult for her to travel and to drive. Problems with computers, working on a computer all day to put together her presentations can cause not only eye issues but also the fatigue and other things we‟ve talked about earlier. A lot of our Sjögren‟s patients end up with hoarseness or difficulty speaking, and obviously that presents a problem if she is presenting at meetings. that‟s a major issue that she lives with. So A constant dry So her cough; air conditioning and dry heat causes dryness. traveling, her hotel stays, her airline travel, obviously it exacerbates her disease. Tongue and mouth burning, oral infections, yeast infections, tooth decay. When Sjögren‟s patients don‟t -- since they develop a normal production of saliva, which many of us don‟t realize that we produce about a liter or so of saliva a day, and that causes mineralization of our teeth and cleans off the decay on our teeth. So Sjögren‟s patients have horrible teeth decay that cause them many, many times in the dentist‟s office. Audio Associates (301) 577-5882 They go usually one to two months for checkups -- every one to two months for checkups, and not only does it cause -- and most people would say, well, just have their teeth pulled. Unfortunately Sjögren‟s patients can‟t really go with dentures. Because of their dryness they cause yeast So therefore they infections and they cannot wear dentures. have to take care of their teeth as long as they possibly can so that they can live with that with their regular teeth, except even when you cap your teeth the decay goes underneath the gum line because of the lack of saliva production. So most of us who have normal saliva production don‟t realize how important that is to our daily teeth hygiene. Then obviously they cannot eat normal foods. Not only with their decay, but their mouth. Some of our severe patients can‟t eat anything except pureed food or baby food because it cuts their mouth because they have no saliva to help soften the food in their mouth and to be able to swallow it, not to mention they have swallowing issues as well for those severe patients. Then recurrent nose bleeds and respiratory infections are very probable with the severe dryness that this patient might see. Our next patient, patient B, is more of a systemic, we call systemic. a paralegal. It‟s a 40-year-old woman who is She receives clients, works on legal Audio Associates (301) 577-5882 documents, runs errands, attends professional meetings. Her symptoms are vasculitis, which is a skin rash that usually affects the lower legs; peripheral neuropathies, which are numb toes and numb fingers; joint and muscle pain; polyarthritis; and then interstitial lung disease. The repercussions of her symptoms, obviously the chronic skin rash can cause discomfort and alter choice of business attire. She can‟t wear tight fitting clothes or blouses or pants or pantyhose because of her rash on her legs. Her legs are often numb and in pain, which causes She can‟t difficulty to walk, to run errands, et cetera. stand or walk for long periods of time because of the numbness. Her joint pains affect her typing and her writing With ability, and then exertion causes shortness of breath. the lung disease it obviously adds to her daily ability to keep up with the pace of her workload. Then patient C, which we call lymphoproliferative. This is a 30-year-old woman who is a hospital nurse and trying to move ahead in her career and really wants to work. Her symptoms are low grade fevers, fatigue, swollen salivary glands, painful swelling of lymph nodes in the neck and groin, and then a moon-shaped face and weight gain resulting from prednisone. The repercussions of this, obviously she misses work frequently due to the fever and the fatigue. Audio Associates (301) 577-5882 She finds the long hours working on the nursing floor extremely mentally and physically stressful. overtime or per diem work due to the fatigue. She can‟t work She never knows how she‟s going to be feeling or if a flare up might occur. She has problems lifting and assisting patients, and then she deals with potential employment repercussions because of her disfigurement from the moon-shaped face from the prednisone, the steroid that she‟s on. As well as she‟s concerned about catching something from patients and the side effects of the treatment that she‟s on. The biggest issue is not only are the patients a little nervous about her because she‟s tired, she can‟t help them as much as a normal nurse could, as well as she does look disfigured. But in addition she‟s working about catching something which is going to add to her disease as well. edged sword for patient C. Signs and symptoms of Sjögren‟s Syndrome are tough to measure. Some are easier. Obviously are ocular So it‟s a double- dryness with our test that we have, our Schirmer test, the dye scores, et cetera, are easier to spot and understand. The oral dryness, again there‟s the salivary flow along with the other tests that are listed there. They have certain numbers and specifics that come up that help with the criteria for diagnosing Sjögren‟s. Thyroid function tests and obviously a fever is very easy to detect. Audio Associates (301) 577-5882 Other are more difficult. Obviously the pain, the fatigue which many of our presenters have spoken about this morning. don‟t know. Unpredictable nature of the flares we Oftentimes I‟ll be with Sjögren‟s patients who attend just an educational seminar like this past Saturday in Phoenix who know that the next day they‟re going to have a flare up of their disease because they were so active that day. Yet there‟s others who attended the seminar, the next Come Wednesday of the following week they might be fine. they might have that unpredictable flare up and not be able to go to work. Cognition, another difficult area to measure, skills for coping with the chronic disease as well as depression. Will new treatments help? Unfortunately since there‟s the unknown pathogenesis of Sjögren‟s there‟s no cure for Sjögren‟s in the near future. We do need more research funding to help not only for a cure, but also to find new prescription drugs as well as understanding can lead to better treatments, but this is nowhere near to a cure. It‟s just helping them live with their symptoms. Then currently over-the-counter treatments are insufficient because not only to do they provide temporary relief, but our patients spend thousands of dollars each year on overthe-counter products; eye drops, supplemental saliva production products that are over the counter, along with Audio Associates (301) 577-5882 others for their pain, their joint pain and their fever. A survey that we did in 1998 -- and we‟re currently doing another survey that will be finished by April, but our survey from „98 our patients‟ average spent $1,600 a year on over-the-counter products. Thanks to a new IRS ruling some of that will be able to be tax deductible for them on their IRS statements starting immediately, and we‟re working on over-the-counter legislation that‟s been introduced as well to help them be able to write off more of their over-the-counter medications as well. Our suggestions are pretty limited in regards to we would love to have Sjögren‟s Syndrome listed as an individual disease with separate guidelines relevant to the wide-ranging impact on all the organ systems and their ability to work. Dr. Vivino, and he would be able to speak much more to this than I can, but he would encourage you to consider a ratings scale or chart based on the severity or number of body organs affected, and he suggested this in Philadelphia. He answered some questions, and I‟m sure he‟d be more than willing to work with anyone or discuss in more detail what he means by this. But to look at this besides just the easier symptoms to diagnose, but look at the other areas that are going to affect all the organs and have a sliding scale to develop their severity of their disease. We would encourage to include specialists in Audio Associates (301) 577-5882 specific disease when considering a claim. The question was answered a little while ago, and Duane and others talked about the teleconferencing. You know, Sjögren‟s Syndrome Foundation would surely love to work with the Social Security Administration to develop a list of Sjögren‟s Syndrome experts along with the American College of Rheumatology that can speak to this disease. Oftentimes our patients, as many presenters this week have spoken about, take years to find a doctor that actually understands Sjögren‟s. Just because they‟re a rheumatologist doesn‟t mean they‟re an exact expert in Sjögren‟s, and I know this is probably an issue you run into using rheumatologists. areas. Some of them are experts in certain Not to mention they go to various doctors for all their different ailments that relate to Sjögren‟s -dentists, ophthalmologists, neurologists -- and sometimes they don‟t have as many symptoms as the rheumatologist deals with as the other specialists do. So we‟d encourage you to include various specialists in your -- when you‟re considering a claim, and also work with groups like ours and others that presented on helping you identify these experts. Then we also suggest that you consider copartnering with us to request Congress to modify work environments and schedules to return patients to gainful employment. I know Virginia Ladd did a wonderful job this Audio Associates (301) 577-5882 morning talking about that, but part-time disability is surely something we‟d advocate for. to stay home full time. Our patients don‟t want They They would like to work. cannot handle the rigors of working a full-time schedule, yet they‟d like to be a productive citizen and give back. Oftentimes they‟re worried about even volunteering when they‟re on full-time disability because of the repercussions that if they can volunteer why can‟t they work. So they would like to have that ability to be able to go work somewhere or work from home or various options. We get many calls in our office asking us to advocate for work-from-home schedules and could they telecommute from home, especially in the major cities where commuting adds to their daily stress as well. That it is. Sjögren‟s.org. Just so you know, our website is You can find all the information on diagnostic as well treatments on our website, and you can always contact me as well. If you‟d like to speak with a physician about specifics about Sjögren‟s, and Dr. Vivino who couldn‟t be here today who is in our Phoenix conference, he‟s Chief of Rheumatology at Presbyterian Hospital in Philadelphia, and he‟d be more than happy to take a trip to Baltimore or anywhere else when his schedule permits to speak again for Social Security. So thank you very much and thank you for asking us to be here. Audio Associates (301) 577-5882 (Applause.) MS. : ---. Well, Duane can answer my That would be great. --- Steven. MR. TAYLOR: questions. I would love that. MS. MR. MS. MOORE: : : Sorry. That‟s my brother‟s name. No questions? Okay. Then we‟ll move on to the last speaker. MS. : Okay. Joan Wong. MS. ELIZONDO: MS. MOORE: Foundation. I‟m Meghan Elizondo. Meghan from the Arthritis Okay. Presentation by Meghan Elizondo and Joan Wong MS. ELIZONDO: from the Arthritis Foundation. Hi. I‟m Meghan Elizondo. I‟m I‟m a volunteer, and I‟m on We‟re the Advocacy Committee with the Arthritis Foundation. very excited to be here and really appreciate coming, and we appreciate that you‟re having this event and going through the guidelines and have invited all of these other organizations to participate. MS. : It‟s really a great thing. Meghan, can you ---? Yes. MS. ELIZONDO: (Adjusting equipment.) MS. ELIZONDO: There were actually several of us who worked on putting this together, and myself and Audio Associates (301) 577-5882 Monica Johnson, who is also on the Advocacy Committee, and Joan Wong who will be here in a few minutes. the Arthritis Foundation. So we‟re from You probably know who we are, but The Arthritis Foundation just to go over it a little bit. is in the business of providing services and education to individuals affected by arthritis to maximize their quality of life, and -MS. : You‟re too close to that. And we also work on raising MS. ELIZONDO: funds and advocating for medical research funding, legislation and policies on behalf of people with arthritis, and the number of people with arthritis are 70-million Americans. That‟s a very large number, and it‟s a new So that‟s statistic from the Centers for Disease Control. much bigger than a lot of these other diseases that are out there. So arthritis refers to more than 100 different diseases, and it actually refers to any disease that affects the joints or areas around the joints. So it‟s kind of an umbrella term; and there are two main forms, the inflammatory form, which tends to be autoimmune related, and then degenerative, which is osteoarthritis. So osteoarthritis is the more common form, but the inflammatory form does take up -- I mean it is 30 to 40 percent of people with arthritis, possibly more, and that‟s what we‟re talking about today. Audio Associates (301) 577-5882 From the CDC again we had statistics that tell us that arthritis is the leading cause of disability for Americans over age 15, and that‟s two-thirds of people who are working age. So that‟s people under 65. So that‟s a really large population of people who could be working but are being disabled by arthritis, and that means that‟s a lot of people in the disability system with the disease. Juvenile arthritis is the most disabling childhood illness that is more prevalent than diabetes. the wrong -- okay. There are many forms of arthritis which are immune related, and we have ankylosing spondylitis, psoriatic arthritis, rheumatoid arthritis, Scleroderma and Lupus all fall under -MR. PETERS: (Laughter.) MS. ELIZONDO: Well -- they‟re all separate. It‟s not a form of arthritis. So -- sorry. This is They‟re all their separate diseases, but they‟re caused by autoimmune diseases that affect the joints. MR. PETERS: MS. ELIZONDO: MR. PETERS: (Laughter.) MS. ELIZONDO: isn‟t the right one. I‟m actually going to -- this There we go. So that‟s arthritis. But it‟s not arthritis. So after all the presentations today I Audio Associates (301) 577-5882 think we‟ve all heard this many times. disease. It‟s an autoimmune It‟s chronic illness, and it has cumulative So there‟s no cure for these effects over many years. diseases. So that means you‟re looking, once you‟re diagnosed, you have a lifetime of illness in front of you, and over the years that starts to build up. The arthritis symptoms aren‟t predictable from one day to the next. You could be fine one day and laid out in bed for the next three days, and you could be able to do an activity another day and, you know, it will take you two or three more days to recover from that. unpredictability is a really huge issue. So that Pain and fatigue play a big role in the severity of the disability, and it doesn‟t tend to be just a pain in your toe or a pain in one place. Frequently it‟s pain in many joints, or it‟s very, very severe pain in a main joint, and the fatigue is another huge issue. Fatigue really does impact the way you‟re able to function, the way you‟re able to live your social life, the way you‟re able to work. You sometimes have to base what you are going to do just on whether you‟re going to be fatigued or not, and it‟s not just fatigue as in "I‟m tired. I didn‟t get a good night‟s sleep." God. I can‟t move. It‟s fatigue in "Oh, my I don‟t know if I‟m going to be able to do my laundry today," or "I don‟t know if I‟m going to be Audio Associates (301) 577-5882 able to wash dishes today." And if you do a chore that day you‟ve done like a great deed. Symptoms also vary based on many factors, which include medication, stress, sleep, depression, and physical activity. medications right. So it‟s not just, you know, getting It‟s a big issue that you have to go through this large trial and error process of seeing which medications work for you personally, and then you end up on a cocktail of medications. So you have you‟ll be on up to like 10 or 12 medications easily just to control the arthritis and all the accompanying symptoms. So that‟s a lot of medications to take every day, and sometimes the number of pills can total 100 a week, and that‟s just to get through that week. Another aspect that we see is that secondary illnesses are frequently involved. If you have one form of autoimmune disease you‟ll frequently have something else. So it‟s almost like it comes in clusters, and this clustering effect is -- really contributes to disability, and having more than just -- you know, just a form of arthritis by itself is pretty devastating. But when you start getting this --- of other autoimmune diseases involved it becomes extremely difficult to deal with. So as I said before, there is no cure for arthritis. There‟s no cure for most of these autoimmune Audio Associates (301) 577-5882 diseases. The immune system is still being studied. There‟s anti-TNF drugs. They‟re There are new drugs out. sometimes called biologics, Enbrel, Remicade, Humira, Kineret are the four ones out right now. There‟s Methotrexate which is a DMARD, and DMARD are disease modifying anti-rheumatic drugs. work well for everyone. So, but not all these drugs I mean, you can be on these drugs and they will help some, but they don‟t make things incredibly better, and you‟re still left juggling your cocktail of medications just to make it through the day. this were someone who is on disability and people who are working and trying to manage all of this it‟s a real struggle. So Joan would like to take over. (Laughter.) MS. WONG: I‟m sorry. I feel like the lady If who was at the Academy Awards and her name was called and she was in the bathroom. (Laughter.) MS. WONG: MR. MS. WONG: Is this working? : Yes, it is. Great. I‟m Joan Wong. I Okay. don‟t know if Meghan introduced the three volunteer advocates who are here. Okay. Great, and I would just -- and I‟m sure she also said this, but I‟m going to say it again. To thank Social Security for this opportunity and Audio Associates (301) 577-5882 also just to say that this -- the SSDI program, there are three of here who have, you know, had pretty extensive work histories who are now all on SSDI, and I guess being the oldest and whatever I happen to be the one who has been the program the longest. We‟ve all had slightly different experiences, actually drastically different experiences in the application process. back to the slide at hand -- oh. But, you know, getting What I wanted to say is thank you for the opportunity, but thank you also for the program. It‟s just an essentially fallback. Neither Meghan I had or I managed to qualify for corporate disability. actually, you know, lived probably most of my young life in denial and that‟s actually -- that actually works really well for a while, but I had moved to the bay area from Chicago to start to start a new job. I had accepted this job a week before I was to have my first knee replacement, and then I moved to a new area, out of the consulting business where I was traveling constantly to a job with a little software company called Oracle that I thought would be a lot less stressful. (Laughter.) MS. WONG: Anyway, both of us -- actually all three of us have experienced, you know, working the technology world and that stress and the always-growing demands on employees to be there every minute. Audio Associates (301) 577-5882 You know, be sharp and be at their best every minute and be on call, you know, at any minute to drop everything and go fight some fire, or jump on a plane and go take care of a client problem. That kind of stuff is really, really tough to do when you have a chronic illness that you just -- even, you know, to the best ability you don‟t know from day to day how you‟re going to be able to do. I mean, I‟m the ever optimist, so I was always signing up for things that sounded great on paper and really exciting and I wanted to do it. And I think the end results of all of that has been a lot of cumulative damage and a lot of exacerbation of my arthritis, and I‟ve watched that happen with my friends. We have a pretty good little advocacy group that‟s formed out here in the past year-and-a-half, and -- so, you know, we‟re just a sample, but we do talk about stuff. Anyway, this last point, I wanted to stress - on the slide. I wanted to stress it, but also explain that this is sort of a well-known statistic in the arthritis community, and I used -- before the internet it used to be kind of like the dirty little secret that the rheumatologists knew but we didn‟t know. I mean, those of us who were diagnosed as children, you know, you don‟t -parents are just always told have your kids do to the best of their ability, and -- you know, you don‟t want to tell somebody that they have a 51 to 59 percent chance of having Audio Associates (301) 577-5882 to not be able to work within 10 years of onset. I think Monica and I beat that number by quite a bit, and Meghan‟s probably right around that number. exact study. But I don‟t have the I actually talked to a friend last night to try -- because a statistic like this is cited on the Abbott Lab‟s informational cite called ra.com. Like I said, it‟s just one of those statistics that‟s out there. But I talked to a friend who works for the Bone and Joint Decade, and she actually pulled out this World Health Organization -- oh, and she also knows the authors well, and she told me she believes the study was longitudinal, epidemiological study done in the „80s or the early „90s. So this would probably reflect some of the It would not disease-modifying drugs like Methotrexate. reflect the new biologics which just came out like at the end of „98, beginning of „99, and there are subsequent studies that I think we actually cite at the end in our resources that are trying to predict what the changes might be in long-term disability. But the reality is for people like me and Monica, who is back at our table, you know, we were treated with just aspirin for our whole childhoods, and that seemed to sort of keep symptoms in check. But what it turns out is It that it didn‟t do any -- it didn‟t stop the disease. just reduced the symptoms, so we have -- Monica has had four Audio Associates (301) 577-5882 joint replacements in the past year-and-a-half. MS. JOHNSON: MS. WONG: No. Two years. Two years. As quickly as Okay. she could fit them in, in between recovering and bronchitis or whatever. We‟re all really immunosuppressed, and -- you know, we do the best we can, but we definitely have experienced the flare and remission type thing so -- okay. So the fact, the reason we bring this up is not just that, you know, there are implications of arthritis and musculoskeletal diseases or disorders that can be fatal, but -- you know, just to stress that this is a severe illness. Again, the common knowledge is that with rheumatoid arthritis a life expectancy is reduced by about 10 years, but there are some -- for people with severe arthritis and even though our medications are improving, there are still people who don‟t respond to any of them. think in my case I had a great response to the first biologic that came out, Enbrel. But it only lasted for two I years, and since then I‟ve had only a partial or no response to every other TNF inhibitor and also there‟s another biologic that inhibits, another -- Kineret, which inhibits interleukin-1. So there are a lot of people like me who get a partial response or a response and then it stops working, and then with, you know, what exactly this -- I wasn‟t able to read the study in this case, but the fact that arthritis Audio Associates (301) 577-5882 and musculoskeletal disorders account for three out of every four deaths in the US, and this was a fairly recent -- from a consortium of science writers getting together and doing reports on the current arthritis research. We just within our little community of young adults with arthritis we‟ve just had two people die within six months, both in their 30s, of a secondary condition, a secondary condition to arthritis called amyloidosis. It‟s caused by unchecked inflamation in the body, and not being a microbiologist or a doctor or anything like that, but it‟s something about proteins that build up. Generally on the kidneys, but often on the heart, and actually our friend who just passed away had been on dialysis -- 34. dialysis for a year-and-a-half. Had been on That seemed to be working pretty well, but then she started having seizures, which nobody at Stanford Medical Center -- and this is someone who has had the best of care, could -- they couldn‟t figure out the source of the seizures until this -- her 34th birthday, which was two weeks ago. MS. MS. WONG: : Three weeks ago. She started Three weeks ago. having seizure after seizure. Finally they determined there was some cardiac involvement, and just as they moved her into the cardiac unit at Stanford she had her final seizure and died on her 34th birthday. So, you know, this I think, Audio Associates (301) 577-5882 this is just one case. We‟re told that this is a very rare disorder that only something like less than a 10th of a percent of people with -- or less than a 20th of -- a little more than a 10th of a percent of people with RA or JRA will develop, but it‟s also something that is not -- I think they‟re farther behind than Lupus in terms of diagnosis. There‟s really no signs. By the time there‟s any signs that people have it they‟re already past the point of being able to do anything. So it‟s something that, I mean, you can quote a statistic, but it‟s also really hard to diagnosis, and often the deaths are, you know, recorded as cardiac involvement or a heart attack or something like that. They don‟t realize that there is a -- in our friend Jessica‟s case the proteins had built up all around her heart so that it was so stiff it could hardly beat, and that‟s what when she was -- when her heart was freezing up like that she was having these seizures. arthritis. SSDI issues, we got into this process really like Friday. So we‟ve not been able to review, you know, But we wanted to give So anyway, you can die from the guidelines in a lot of detail. you as people who have been through the system some of our impressions and experiences as far as what we see on this side, like on the user side or the beneficiary side of the system. SSDI seems to us to be geared more towards stable Audio Associates (301) 577-5882 disabilities rather than ongoing illnesses that flare and go into remission, and I guess the other bit about it that‟s not in our sentence is that it‟s flare and remission cycles, but in many cases it‟s also a cumulative, you know, complexity and just aging. So like in my case I had -- as a I was real obvious. I mean, kid I had a lot of hot joints. as a kid if my mother had known about SSI I‟m sure I would have been approved, and that‟s actually another point that we did want to make, is that I don‟t think that, you know, SSI is well known the pediatric rheumatology community. the kids don‟t have caseworkers they don‟t. So two of us If were raised at least partially by single mothers, and that would have been a big help. that was available. But the stable disabilities as well as opposed to the cyclical, I know that‟s something that you‟ve heard from everyone, but another thing that we -- the actual process of, you know, this extended process, somebody said four years to get from -- through all of the denials and finally to a judge who approved them. Somewhere we got the But no one ever had any idea statistic that 60 to 70 percent of applicants who see an administrative law judge are approved, and that just -- and we‟ve seen that. Meghan didn‟t have to go quite that far, It just seems to but she did have to go to the third round. reward applicants who are tenacious and who won‟t give up Audio Associates (301) 577-5882 and penalize those who may be equally disabled but just not very savvy about government programs or, you know, not -you know, so sick that they‟ve got other issues to deal with. Like especially an example is a young woman who we know who lives in Santa Rosa who is in such bad shape because she‟s uninsured, and she has JRA and she is just in the most incredibly bad condition. But I‟m sure that they have not gotten to the point of applying for disability because they‟re trying to get doctors to see her, so you know this whole -- I think we really appreciated the lawyer‟s point that the system would be great if the system worked precise enough that you didn‟t even need an advocate. In my case I‟m almost embarrassed to say how I got approved because I just -- I actually was in such bad shape I had not even opened the mail, the letter that said I was supposed to go see the Social Security doctor, and he called because I hadn‟t shown up. I was living with a women who was a two-time -- my roommate who was a two-time cancer survivor at the time, and she was just so astounded how bad, how sick I was. joints. At this age it‟s almost not so much the It‟s the fatigue and, you know, when you have that kind of a condition is it pretty hard to follow through these processes to the end. She just went off on this doctor telling all, how bad I was, and what she told me he Audio Associates (301) 577-5882 said was, "Wow, I just have a little arthritis in my knee, and I can‟t imagine having it all over," and I got approved. So that was easy, but I have had -- and we‟ll get into this more later in the presentation. I‟m also the one who just has -- I just keep trying to go back to work, and I want to work, and I have been so penalized in all of my attempts. Just communications with the local office have been just so difficult that always have to go to a -- I‟m ending up finding out just having an advocate as my Congresswoman, and they know me, and they have a person who deals with field advocacy -- or there‟s something they call it when they‟re helping out constituents and, you know, I -- the first guy I worked with is now her chief of staff in Washington. So we went there on our first advocacy trip last year, and there was like the first or second guy that I ever dealt with. he‟s done well. But we really just feel like, just to kind of wrap up that previous slide, why can‟t there be a system that, you know, that is -- no, before. Yes. This one, the So 60 percent. This having to go to an ALJ, in Meghan‟s case You know, she was just -- her case was just about to go. they were in the back room and about to go to the judge, and her -- and then it was settled, and she‟d had the same Audio Associates (301) 577-5882 documentation all along. So why can‟t there be a process that recognizes the important things in the documentation, and it‟s just a little more -- a lot more pinpointed to the things that cause people to be disabled. Okay. Okay. So I‟ve been talking around this, but It the process, we wish the process were more transparent. seems like we‟re being asked for, or we or people who apply for this ---, it seems like we‟re being asked for information. We‟re not quite sure what it‟s going to be used for, and there‟s kind of a sense that, well, you know, that we don‟t want to give them too much information because then they‟ll tell us what we want to hear -- what they need to say. But since I basically didn‟t participate in the application process, and it was long time ago for me, I don‟t remember that well. But talking with Meghan and Monica, and we‟ve talked to others in, you know, our circle before we came up here, people felt like they weren‟t sure what -- at what level, you know, they should be answering these questions. MS. ELIZONDO: Well, and the other thing, I mean, like Joan -- Joan is talking about the application level. But, I mean, based on Joan‟s experience -MS. WONG: This is through the whole --- the whole process, when she MS. ELIZONDO: was transitioning to and from work and reapplying for Audio Associates (301) 577-5882 disability and all of that, letters would kind of come at random and they would have random decisions made, and then she‟d get another letter like a week later with a different decision. So it was really confusing, and that‟s where basically she chose as a point of contact her chief of staff -MS. WONG: The Congressman. Or the chief of staff for MS. ELIZONDO: Congresswoman Eshoo. MS. WONG: Well, he‟s not doing that anymore. Oh, yeah. MS. ELIZONDO: MS. WONG: that‟s the guy. He‟s been promoted out of it, but There‟s someone doing it. MS. ELIZONDO: Right, but I mean that that‟s -- right. But that‟s who Joan connected with, and so she It wasn‟t through SSDI. But it shouldn‟t have to be there. got her point of contact. MS. WONG: It should be somebody at Social Security. MS. ELIZONDO: MS. WONG: Yes. So I guess what I‟m saying, yes, what I‟m saying is -- I‟m not sure how much we‟ll get into the application process, but after -- once you‟re on disability and if a person really wants to work, which is, you know, I think that‟s what you want, there just needs to be a better process for a clarification of the work rules. Audio Associates (301) 577-5882 Like I kind of feel like I‟m an expert on this substantial gainful activity and trial work period and, what is it, the period of -- you can be reinstated, extended period of eligibility and all of that, but that just doesn‟t -- and even, oh, like unsuccessful work attempts. work for the kind of disease that we have. I think a good example is that, you know, that commercial they were showing during the bubble where there was a job board or something, and they said, "What‟s your recent work history, and have you ever done this?" the guy is like, "No." You know, sign him up. And It just doesn‟t I‟d been off work a long time and I managed to get a job with a startup, and it was incredibly hard on my life and my illness. My husband still insists that I was like psychotic for that period of time. So I worked for one startup for six months. I had managed to get some little consulting before that, and then I worked for this startup for six months. killed me, and it was just like "Survivor." It nearly Every two, every staff meeting, every weekly staff meeting it seemed like they were looking for another. As things got stuff there had to be another scapegoat, and --- survived it, and I was working in a field that I‟d never worked in. technology research. recruiting firm. I did They‟d hired me to do -- this was a They‟d hired me to find technical people. So, you know, I built a department and we did as good as we Audio Associates (301) 577-5882 could, but it was just so, so stressful, and I was having all kinds of health problems. So I quit because I got an opportunity to do a consulting project, but as soon as I got there the guy who hired me -- at Exxon, the guy who hired me got a job with another startup, with a startup. So that was like, I mean, they did pay a little and, I mean, I just out of there as quickly as I could because I had lost my sponsor. But, you know, that still added to the clock ticking, and then I got a job with another startup that only lasted five months before it folded, and this, you know, one of -- they had been funded by one of the top venture capital firms and everything looked really good, but it was just a crazy time. So, you know, all of that lasted like a yearand-a-month, and so it didn‟t qualify as an unsuccessful work attempt. I was just trying with all my heart, but the result of that was so I got the -- the whole marketing department got laid off from this software company in mid January of 2001, and -- yeah. The result was that, you know, that counted as not an unsuccessful work attempt, and furthermore the regulation about a trial work period when it stated that it‟s nine months over a -- you know, any nine months during a four-year -- five-year period. I hadn‟t worked for over five years, so I thought I got another trial. Well, I didn‟t. Audio Associates (301) 577-5882 I mean, I admit I benefitted from the expedited reinstatement, which is a new thing, but this point of contact that we‟re talking about was just crazy. mean, I actually had one. I There was some guy who called me up, and he gave me his direct line and he was available to me like immediately, every time I called with a question, up until the time that I -- they got the information they needed from me. I had been sending work reports, you know, all the time that I‟d been working, and then he just disappeared. His phone number didn‟t work anymore. Everything wasn‟t accessible to me, and I was told I had a $77,000 overpayment. After I called the Congresswoman it suddenly became a $29,000 overpayment, just instantly, and then my benefits started being withheld, but -- and then a couple months ago I got a notice that there was some recalculation I think because of the earnings I had while I was working. I got a lump sum payment, and all of a sudden now I‟m back on, and they only withheld -- I mean, I hate to admit this, but -- and I don‟t dwell on a single case, but this is how weird the system can be. You know, all of a sudden I‟m being paid and I don‟t know why, and I had taken myself off direct deposit because I wanted to save up the checks. I was guessing when -- I guessed wrong because I had thought that I got another trial work period. So I continued to send in work reports, Audio Associates (301) 577-5882 called, write, everything I could manage to fit in besides being crazed at work, and, you know, still they just kept paying me. So the systems are a mess, and the information flow is slow that even for the most diligent beneficiary this whole business about an overpayment didn‟t even come up for me until two years after I had stopped working. So anyway, these are some ideas that we came up with that we had thought of that might help the system to, you know, maybe get some people off the system or get them partially off the system, but support people in work that they can do within the constraints of their illness. I know that I think practically everyone up here has mentioned something like this, but I guess for me and for us we feel like this trial, the work trials, need to be -- there needs to be a different criteria or a different way of counting that. Because in five years somebody‟s illness can have So they could have worked two months completely changed. and the beginning of a five-year period and had a problem, but then, you know, they could be a lot better in five years, or they could be a lot worse in different ways. MS. MOORE: improvements after lunch? MS. WONG: MS. MOORE: Yeah. Okay. Yeah. Let‟s us go ahead and Joan, can we pick up with the So - Audio Associates (301) 577-5882 break for lunch. We‟re going to take 45 minutes. So we‟ll Okay. start at 1:10 and we‟ll come back at -- say 1:45. Let‟s pick up at 1:45. I‟m sorry -- (Multiple conversations.) MS. MOORE: Want to do it for 45 minutes? Okay. 2:00. (Whereupon, a luncheon recess was taken.) A F T E R N O O N S E S S I O N (2:00 p.m.) MS. MOORE: We‟re going to continue with Joan Wong, but before we do Barry has a really quick announcement. Audio Associates (301) 577-5882 MR. EIGEN: themes. This is a day of coincidences and During the various breaks people have been asking questions about how you reach people in Social Security and the state agencies locally so you can help out your clients and the people you work with, and it turns out that you can look up some of these people on Social Security‟s website. So I thought you‟d like to know about that. Just go to www.socialsecurity.gov and right in the middle you look for where it says "Disability" and you click on that, and then on the right-hand side there‟s a link called "Professional Relations." You just click on that and then follow whatever you want to follow, and there are even names of real people you can look up within the states and I think even at the regional level, but certainly in the states, and that will help you. highly. MS. WONG: MR. MS. WONG: How‟s that? : Can everyone hear? It‟s a really good website. I recommend it Put it up closer ---. Closer up? (Adjusting equipment.) MS. WONG: Is this better? Okay. Great. Actually we‟re just going to wrap up and basically wanted to say that these are some of the suggestions that we came up with that we thought -- we think would help to -- people with arthritis, people with inflammatory arthritis, to Audio Associates (301) 577-5882 become more independent of the system or even go off the system. I‟ve been talking about some of the issues that I personally experienced with work trials, and I think we actually -- I won‟t go into detail here, but I think we do have actually a number of ideas about how the trial work system could be made more effective so that people aren‟t scared to try to work and that it would actually work as an incentive to help people move off of disability if they are able. Aside from the labor market issues and pressure to work long hours there, I mean, the work world is becoming slowly more able to incorporate things like flexible work and telecommuting and those sorts of things, and the right kind of situation like that could really work well for somebody with disease that, you know, makes it difficult for them to be physically on top of things every single day but, you know, still has stuff to contribute from their brain and from things that don‟t require a lot of physical exertion. As other folks have mentioned, the healthcare coverage issue is huge for inflammatory arthritis. The best new medical treatments that are available now are extremely expensive. They‟re 1,500 to 3,000. For me I have 10 medications or so that I‟m on, and one of them I‟m on a double dose of a biologic. So it‟s like $3,000 a month, so that alone is just -- and it‟s not currently even covered under Medicare. So the healthcare issue is huge, and I Audio Associates (301) 577-5882 realize that ties into some other things that are happening in terms of changes with Medicare. there are people who could work. But we believe that Who could work, part-time or maybe even full-time, but especially folks that aren‟t able to work full-time but are able to work part-time and maybe therefore not need the benefit payments but would have to be taking jobs that doesn‟t provide benefits. permanent healthcare would make a big difference. The earned dollar limits, we just wonder whether there has been any consideration about correlating those limits with the geographic locations and also the sort of work that people are able to do. Because the $7- or So having $800-a-month limit is just, you know, nobody could live on that in any major urban area, and the bay area seems to be - is probably worse than most in terms of what it cost to live here. So, you know, people even exceeding that dollar limit, people may be working and, you know, helping to support a household, but they still -- it‟s still not enough to make up for the benefit amount, the lost of benefit amount when -- people that are on, you know, the maximum amount. We wondered whether it would be possible to create some sort of a part-time work track for those with chronic diseases who just don‟t -- you know, have enough issues that prevent them from being able to work full-time, but to build kind of an SSDI model of benefits and rules that would apply Audio Associates (301) 577-5882 to part-time workers so that they would be maybe partially on the system in some way. So in summary we just wanted to say that arthritis is a serious and complicated disease with a high rate of disability, and I think, you know, we‟ve talked about examples of that and that there are degrees and all of that. But there is a large population of people who have longstanding inflammatory arthritis who really need your disability program. So, you, know, thanks again for that and the current system, but unfortunately the current system doesn‟t work well with the day-to-day flare and remission and the cycle of inflammatory arthritis, and it doesn‟t -it also doesn‟t seem to -- it seems to focus on this -- this is back, something that we had referred to earlier. But, you know, it doesn‟t seem to work well with the reality of people who have long-term arthritis, which is often there are long-term, you know, joint destruction and that sort of thing. But a lot of the times when the disease, quote, It‟s still unquote, "burns out," there are still issues. active in terms of causing extreme fatigue, and lots of, you know, harder to pinpoint symptoms. In our little group when we discussed the process of getting through disability and applying for disability folks are always counseled not to mention that they‟ve had depression or that they see a counselor to talk Audio Associates (301) 577-5882 about their issues of living with chronic disease, and that yet that depression and, you know, a lot of the emotional and mental toll of living with the disease and all of its complications, it really does add to disability. So, and just in a nutshell, our suggestions for improvement include really much more transparent; easier to communicate with the person who is in charge of your case, like even having caseworkers or something like that, point of contact access; and to improve the work options along those lines that we mentioned in more detail. I just want to quickly give credit to some of the folks in places where we get -- you know, we quickly put together this information. The Arthritis Foundation website is arthritis.org and there are local offices, there are local chapters. All of that and phone numbers are all I‟m sorry. I only know the accessible from the website. 800 number for the local office, but that‟s all on the website. As I mentioned, I think I mentioned, this Bone and Joint Decade. Apparently the year of 1990 to 2000 So was the decade of the brain, and that went pretty well. whoever up there in sky at the World Health Organization decided to make this decade, the first decade of millennium, the decade of the bone and joint. activities going on. There are a lot of All these different nations have Audio Associates (301) 577-5882 signed up, but there‟s -- you know, they sponsored research, and it‟s really brought together a lot of the practitioners and researchers all over the world working on musculoskeletal issues. So they are actually a really, really good resource, and I believe it‟s bjd.org -- bjd.org? MS. MS. WONG: MS. will come up. MS. WONG: Valley. (Laughter.) MS. WONG: Okay. The Centers for Disease Oh, we‟re sounding so Silicon : --- I think. Both may work. : But your can Google it and it Control has -- you know, it has been really good for the issues of actually living with rheumatic diseases and chronic conditions, and the survey, the epidemiology stuff. National Institute of Arthritis and Musculoskeletal and Skin Diseases, NIAMSD, is where a lot of that really greater research is going on that we need to keep going on having, but they are also looking at issues of disability and how the treatments affect long-term disability. professional rheumatologist association. These are three people that I talked to when we were putting together this presentation. she‟s like -- she‟s our hero. Amy Leong, ACR is the She has 18 different joint Audio Associates (301) 577-5882 replacements, and she‟s the Spokesperson and Director of Strategic Relations for the Bone and Joint Decade. She happens to be here in the bay area today, but she lives in Paris and she‟s just all over the world just working with, you know, awareness of chronic disease and inspiring people, but also, you know, working on issues like the disability issue that we‟re talking about today. Saralynn Allaire is -- she‟s with -- there‟s a spelling error. She‟s an associate professor in Boston, Boston University‟s clinical epidemiology research and training unit. But her specialty is research on disability and preventing disability from rheumatic diseases; and lately she‟s been focusing actually on strategies for keeping people working who are having problems who might need to go on disability, but she recently published something about how to keep people working. Ed Yelin is here in San Francisco at the Institute for Health Policy Studies. He has done just all kinds of stuff about disability and arthritis, and his big point to me was the biggest -- I mean, he‟s been looking at labor market issues, too, and how that impacts disability. But he felt that we really, really needed to stress to you how complex the nature of the fit, finding the right fit. The people can go back to work maybe. can. Some people probably Probably even more can if we can maybe help people to Audio Associates (301) 577-5882 really assess what‟s going to fit, the right kind of job that‟s going to fit with their disability and what they‟re able to do. I mean, when you‟re in pain and you‟re in a whole lot of fatigue it is -- and you‟ve got, you know, things going on when you have arthritis for a really long time you can have all kinds of complications that are -- I think as some folks have mentioned, that are even just side effects of the medications. In my case in October I was walking out my door and just did step down the same way I‟ve done millions of times before and ended up on the floor of the garage with a spiral fracture of my femur, and it was 10 days in Stanford Hospital and a whole lot of titanium -- and I had just had a bone density scan that said I looked really good, but apparently it just -- the bone just imploded. get complicated. So things I guess you need with jobs -- I mean, that was kind of a freak thing, but I think one has to be realistic that those freak things just keep happening at our current rate of being able to, you know, treat people medically, and so something about getting to a level of detail better than just saying a job that accommodates freak things happening. (Laughter.) MS. WONG: Then just studies. This is just a snapshot, but Dr. Fries at Stanford is really focusing on Audio Associates (301) 577-5882 reduction -- well, he‟s actually focusing on long-term outcomes of rheumatic diseases and arthritis in particular. This happened to be a long-term functional study of RA patients from „77 to „98, and he found some reduction in the rate of disability. I believe it‟s not at the level of, I I think the don‟t know, scope of this Pincus study. rheumatology community still feels like we have to live with the Pincus and Callahan study until we‟re able to know more. That, you know, more than 15 percent are disabled within 10 years of diagnosis. But he did find some reduction, Fries and Krishnan, in this study that I cited here, and that was due they said -- this is prior to the biologics, so they are attributing this to Methotrexate, which was the first powerful DMARD, disease modifying drug. Then this last person, Allaire -- I guess I had meant for this to be alphabetical, but anyway -Allaire, her name is Saralynn Allaire at BU, and this, I think this was her article actually where she was looking at preventing disability by finding strategies to keep people on the job. As I‟m sure you‟re aware if, if the workplace, if the job can be, you know, tailored or accommodations made that‟s going to be a lot easier than trying to get somebody to work who hasn‟t been working for 10 years or five years or whatever. So that‟s it. (Laughter.) Audio Associates (301) 577-5882 I don‟t have a thank you slide. MS. : But thank you. (Applause.) MS. MOORE: Joan? Questions? MR. EIGEN: You said very quickly in passing Do you have any questions for that people are counseled not to mention that they‟re having depression. Why? MS. WONG: I won‟t know that -- I mean, they‟re not counseled by -- this not from Social Security, but in general -- I mean, maybe it‟s because the therapists don‟t want to have to fill out more forms, but -(Laughter.) MS. WONG: We hear this constantly that that will make people thing that you‟re one of those whiners and that it‟s all in your head, or they‟ll go that way and discount some of the ---. an attitude. MS. ELIZONDO: It‟S an attitude, but it makes It‟s an attitude. It really is the focus -- they‟re afraid the focus will shift from your physical problems to the mental problems, and so they stay away from the mental problems because the problem is really physically and that‟s why you should be getting disability. MS. WONG: That‟s for people who are lucky -- you know, not lucky enough, but whatever, who happen to have those hard diagnostic features to their disease. Audio Associates (301) 577-5882 So I guess to some extent it‟s, you know, don‟t, that this will water down your application. Just, you know, give them the stuff that they like, which is, you know, X number of joints inflamed and, you know, X number of joint replacements. That that‟s a lot easier, and just stay away from the other stuff, but -- it would be nice, I think it would be -- nice is maybe not the word, but it‟s more realistic. You get a better picture when you know that there‟s -- when we‟re able to acknowledge that there are other things besides just broken joints or -MS. ELIZONDO: is just -- I need your ---. Depression is just -- it does? no. Now it doesn‟t. (Adjusting equipment.) MS. ELIZONDO: factors. Depression is just one of the Right. Well, and depression I don‟t know if that works. Depression is just -- oh, I mean, there‟s sleep dysfunction which happens from pain, and then there‟s the pain itself, and then there‟s the medication cycle, and if for one reason or another you miss your medications for a day you can be thrown off for two weeks. careful balance. So, I mean, it‟s just such a So depression is just one of the factors. I mean, if it were your disease and depression, then sure. But, I mean, the thing, the fact is it‟s your disease and then all these other factors on top of it, and they just Audio Associates (301) 577-5882 cumulate, and at some point you just kind of break down, and that‟s -- you‟ve done the best you can do, and you have to figure out where you‟re going to go from there and how you‟re going to manage your disease because your disease as taken over. So the goal of course is to manage your disease I‟ve got some things and then at some point say, "Okay. under control. work." I want to go do something and I want to go And then you run into this other cycle of "How do I start to do that?" because there are all these weird limitations. For me if I try and go work it‟s not going to You know, I might flare myself up if I I might lose my insurance. I be really that good. try to take a full-time job. might go to a job that I don‟t have insurance for the first three months or something. I might try and take a part-time job, but I‟m making over the maximum, but it‟s not enough to -- and I lose my Medicare. So all of those factors are -- they really just they start to stir up this whole fear factor of, you know, "Well, I don‟t want to go to work." MS. JOHNSON: MS. ELIZONDO: Meghan, mention the NPR study. Oh. So I don‟t know how many of you heard that there is an NPR radio show that Robert Gasner pointed out to me about disability in America and that only 0.14 percent of people on Social Security disability successfully transition back to work, and that number is so small and -- you know, there are people like us Audio Associates (301) 577-5882 who are young and we want to work, and so how do we do that? You know, we don‟t want that number to be so small. MS. have to be. MS. ELIZONDO: Yeah. I mean, because working : And we don‟t think it should is part of one‟s self-esteem, so in some ways that part of solving some of your disease, is to like build some selfesteem that‟s not your disease. You know? Because at some point when you‟re not working and you‟re just going to doctors all the time you‟re like, "Oh. This is who I am. So then I‟m a diseased person who goes to these doctors." you want to do something outside of that. MS. WONG: Well, I think where you started on that point about depression, often with people who have chronic disease depression is not just -- it has certain flavors and certain triggers, and it‟s things like not being able to sleep because of being in pain. In my case I -- it was I‟ve had a really bad year-and-a-half with insurance problems, and so and then we -- last year we finally got on what was a pretty good plan and -- but they wouldn‟t approve, but I was going through my march through the biologics. So I‟m now on the last one that I can be on before going to something experimental, and it actually seemed to work pretty well, but I needed a double dose and it didn‟t -- that was really clear immediately starting it, Audio Associates (301) 577-5882 and it didn‟t get approved until the end of November. January 1st my husband‟s employer changed. Then We stayed on the same plan, but they changed the whole university to a single prescription plan, and so we had -- after my poor doctor, you know, going from August to November she was fighting it out for me to get this double dose, and then in January we found out that we had to do it all over again with a different prescription company. So I had lots of gaps in the medication over the end of the summer and then another big gap after Christmas, and so that -- and that stuff throws -- it just throws your system all out of wack. guess that hit or miss. I It still is very much of a hit or miss thing, but when you find something that works there‟s all kinds of barriers to getting it and then, you know, you have to deal with trying to keep it working, keep that balance working. MS. ELIZONDO: fail for no reason. And sometimes they‟ll just So, I mean, that‟s one fear at least that I sometimes have, because just doing daily things in my -- I‟m on disability so I‟m not working, but I still try and keep really active, but there will just come this time where I‟m taking all my medications, and I‟m doing everything I‟ve been doing; and something doesn‟t work, and I don‟t get enough sleep. Then I don‟t get enough sleep the next night, and then I‟m in pain and then all my medications don‟t seem Audio Associates (301) 577-5882 to work. So, I mean, that‟s kind of unpredictability that you‟re dealing with with a disease, and that makes it really hard to say, "Oh, I can go back to work." Because your ability to like be in the same place and be healthy over days at a time, and show up to work and, you know, not look like a flak e-- all these things are really part. You know, they really they look like personality problems and they‟re physical, because you‟re just blanketed in pain and you‟re blanketed in fatigue, and your brain is just -- but, you know, your brain is in a fog. MS. WONG: So anyway, somehow we go there from "Why don‟t you mention disability," but -MS. ELIZONDO: depression?" MS. WONG: Or depression. Yeah. But it Yeah. "Why don‟t we mention would be wonderful if there was some way to build in realistic questions that elicit. Like Stanford uses, and I think it‟s a pretty common use throughout the rheumatology world, that use a health -- something like -- it‟s a health assessment questionnaire, but it‟s for assessing where people are, and there are -- for rheumatology there are lots of questions about emotional state. people? out? Do you avoid contact?" You know, "Do you see "Do you get I don‟t know. Do you socialize at all?" You know, "Do you feel happy today?" or that kind of stuff, but that‟s along with Audio Associates (301) 577-5882 asking the clinical questions about what hurts. We‟d love another question that we could answer quickly, but --. MS. ELIZONDO: question? Are we done? MS. WONG: That‟S it, right? Thank you. Thank you. Do we have time for more MS. ELIZONDO: (Applause.) MS. Session Two: : We‟re transitioning. Okay. Questions for the Audience Moderated by Susan Lauritzen, MD DR. LAURITZEN: My name is Susan Lauritzen, and I introduced myself yesterday, but we‟ve had a turnover of the advocates today. So I‟m a pediatrician and a medical consultant from the regional office in San Francisco, and I‟m here to hear all the speakers, which I‟ve really enjoyed both the days. I thought I knew a lot about some of these conditions, and I feel like I‟ve really expanded my awareness and really personally appreciate people talking about their own symptoms. I think has really helped me also as someone reviewing cases to think about we‟re always trying to match up the data with remembering that we‟re talking about real people and their specific conditions. I would like to thank people for sharing the things that they have today. (Applause.) Audio Associates (301) 577-5882 So DR. LAURITZEN: So this last session is It‟s at designed to be sort of a rambunctious discussion. the end of the week and it‟s at the end of the day, so we‟ll see how rambunctious we can make it. But there is a list of questions that you‟ve probably already seen, but they were on the -- on the next page of the agenda, and Glenn Peters has already started the ball rolling here by -- very nicely when he started going through these questions. "No, wait, wait, wait. afternoon." So what we‟re going to do, we have between now and 3:00 and then we‟ll take a break again at 3:00, and then we have more time. I don‟t know that we even -- we can I thought. That could be my talk this stop early if we‟re through, but we have until 4:00, 4:15, and then I think Sue and Barry are going to wrap up and finish this off for the day. But I‟m going to do is just go through the questions, and this is really the time for the advocates as well as for people other than Social Security to really have their time to talk. So I invite you again to say whatever you like, as much as you like, and if we run out of steam on these questions I wrote down a few other things just that sort of heard and themes going through the day that we can also talk about. So do people have this attachment, this? seven questions, and I‟ll just read. Audio Associates (301) 577-5882 We‟ll start with The number one, which reads "Are there factors that would help us to evaluate disability claims that we could add to or change in our immune systems?" I think Barry wrote these questions, so I may ask him to elucidate ---. MR. EIGEN: No, not me. Who is responsible for this DR. LAURITZEN: question? Is there someone here that you want to say We‟ve got precisely what you were looking for with that? sort of the policy people at the table here. Somebody probably wrote this question and they‟ve got their pens poised, but I think what we‟ve already heard -- so factors that would help us evaluate disability claims that we could add to or change in our immune system listings. a generic question. MR. EIGEN: already heard. DR. LAURITZEN: Beyond what we‟ve already And I would say beyond what we‟ve So sort of talked about, and I would say what I‟ve heard that we‟ve already talked about for this question is thinking about the introduction and preamble and that people have talked about expanding that and putting in there the rulings into that, referencing the rulings to the regulations, putting more information into that. I, just to be a devil‟s advocate on the other side of that being someone who trains on some of these listings, when I go out to train people say there, "I Audio Associates (301) 577-5882 can‟t read through that information. much there. You know, there‟s too So I It‟s hard to get through all of that." already mentioned to Barry I don‟t if there is a way of, you know, we could maybe develop training outlines, because it‟s nice if you are interested in -- you know, if you for some reason have to get all that information. If you‟re trying to have easy access in and out of the listing I would say too much front loading also gets people scared off. So I‟ll just put in my two cents on that, but do people want to add other things about -- it‟s a very general question. there things that we can add to the immune listings? good. Somebody‟s in the back. MR. LEACH: Program again. Hi. Bill Leach with the Access Are Oh, First of all I was very intrigued about Barry‟s suggestion about taking the criteria that are set forth in 14.08N to talk about some of these constitutional types of problems and sort of the multi-focal problems. have more body systems involved, and there is a potential improvement there, because all you really have to show for that listing is marked impairment in one of the three areas that‟s outlined. That gets me to the my specific comments about the listings that I deal with most frequently. I deal We primarily with primary immune deficiency in the context of immune deficiencies. So most of my comments are going to be Audio Associates (301) 577-5882 directed towards the relevant listings of 14.07 and 114.07. In that listing for both children and adults it talks about documented recurrent severe infections and gives a frequency after that. There‟s no definition in that listing or anywhere in the introductory materials about what we mean by severe, and one of the problems that I‟ve run into repeatedly with adjudicators is everybody has their own notion of what we mean by severe. The difficult is that people with impaired immune systems any infection is pretty much severe, and I‟ve had situations before where the doctor who testified at the hearing would say, "Well, it‟s bronchitis. Bronchitis is not a severe infection." And a response is, "Doctor, for me and you it‟s not a severe infection. For somebody who has no immune system it‟s very severe because it lasts a long time." One of the suggestions that I was going to have to either define severity or start looking at giving some guidelines for severity. The frequency of the infections themselves is a good guideline in and of itself, but so is the duration of the infections. This is one of the hallmarks of people who have impaired immune systems. While I may be over bronchitis within a day or two, people with immune deficiencies may have a couple of weeks to get over it. So I think one of the things that could be done to improve that listing would be to make reference to the Audio Associates (301) 577-5882 duration as a possible guideline for getting at this whole issue of what is a severe infection. It‟s one of the ones that turns out to be a stumbling block repeatedly in my experience in doing these types of cases. The other good You thing about it is that it‟s a lot easier to document. can take the document, the duration of the infection, by how long the person is taking antibiotics. The other thing I would suggest to you is a possible modification of that particular listing. It talks about three severe infections, documented recurrent severe infections within a five-month period. A five-month period to look back isn‟t necessarily going to work all the time because there can be seasonal variations for these folks. Some times of the year are a lot worse than others. What I would suggest is you maybe would want to go to a 12-month look back rather than a five-month because then you‟ll get a more longitudinal basis for how the infection frequency and duration varies over time. global picture. It would give you a better Obviously that may mean bumping up the number, but for most of these folks with severe infections if go to five or six in a year, you know, you‟re still going to be getting a pretty good picture of the problems that they‟re having. questions. DR. LAURITZEN: Okay. I want reserve my other comments for other Audio Associates (301) 577-5882 MR. LEACH: -- But for that particular question DR. LAURITZEN: MR. LEACH: Spread them out. Great. For that particular listing those I do want were the two issues that sort of came out to me. to say that I really like the idea of possibly borrowing some of the concepts from 14.08N for the entire section, not just the primary immune, but for all these folks who deal with fatigue, problems with concentration, problems with limited social abilities, because they affect everybody. The autoimmunes, the primary immunes, it‟s a global story for all of those. Thanks. Right. Yes. Thank you. It I DR. LAURITZEN: think Barry probably has something to say about that. does seem that -MR. EIGEN: says that. (Laughter.) DR. LAURITZEN: I guess. You‟re supposed to laugh when she That‟s going to be line here It does seem like the biggest issue that I‟m hearing today is the whole episodic stuff, and there‟s a model for that in the childhood functional equivalents built into, you know, talking about certain, you know, number of infections or hospitalizations over a year. if you can borrow some of that ---. Audio Associates (301) 577-5882 I‟m wondering MR. EIGEN: Right. In fact I was going to say something just like that. We have various rules in other body systems that you meet the listing if you have episodes that endure for two weeks, that occur for a certain number of times, or they last shorter than two weeks but they occur more frequently, or they last longer than two weeks but the occur less frequently. The reason we use such vague terminology is as you can imagine, remember what I said at the beginning, put yourself in our shoes. We‟re trying to write a rule that every single person who comes in the door who has what it says in the rule will be found disabled, no questions asked. So I guess my question back to you is would a rule like the one I just described do that? Is two weeks too long for -- two weeks, three times And suppose we in whatever period we choose too long? provide these alternatives for more frequent but less lengthy episodes? DR. LAURITZEN: referring to? MR. LEACH: Yeah. I‟m familiar with some of Do people know what he‟s the listings you‟re referring to, and certain any guideline is preferable to the situation that we have now where it‟s a sort of open-ended kind of thing. You know, I‟ll welcome Anything that gets a any step in the right direction here. little bit close to making it easier for these adjudicators Audio Associates (301) 577-5882 to identify. So, yes, that is a possible way to go. I would like to see some alternatives though, including some of this alternative language like even if you don‟t meet the frequency and duration of the infections or hospitalizations we can still look at functional limitations à la 14.08N. I think that that is a possible way to go also, again just to give them the guidance. Particularly guidance that So they‟re familiar with, because again when you‟re borrowing from other listings they can say, "Okay. I‟ve seen that So, before in the pulmonary listings so I understand that." yes, I think that could be very helpful. MS. VOGEL: And, Barry, I mean, in our recommendations it gives you listings of the frequency and typical infections that the patients have. MR. EIGEN: I saw that, and in fact I should also say I heard loud and clear in your presentation this morning that any infection we could probably consider to be a severe infection, and we might not have to get into -- I mean, if we do it, especially if we do it in terms of duration, we might not have to deal with what constitutes a severe infection. rule anyway. It strikes me as an easier way to write a So I thought that was a good idea, too. DR. LAURITZEN: On a detail of that, it sounded when you were talking about the area that shows -in the HIV that shows a marked level, but then that was Audio Associates (301) 577-5882 following a question about the Lupus where they‟re talking about two body systems, one at least moderate. sounded like different levels of severity to me. heard that when you said that. MR. EIGEN: but that‟s a good one. Oh. Yes, I didn‟t think of that, I I So those I mean, I Yes, that‟s a good question. mean, I have to tell you, I have no problem saying this. don‟t understand. times. That‟s why I brought it up a couple of I don‟t understand what the rules means by a So, I mean, in a sense it‟s a moderate impact on an organ. apples and oranges. purely functional. In the one case we‟re talking about a I mean functional like work functional, and in another case we‟re talking about how an organ functions, which I guess is -- I mean, I should ask you this. Is that meaningful to a physician? Are those words meaningful to a physician; and, even if they‟re meaningful to you, can we be confident that some other physician in Utah or some place is reading those words the same way you are? I don‟t have an answer. DR. LAURITZEN: Do we have any physicians in I don‟t the audience who would like to respond to that? know that thinking about -- to me thinking about a meaning or a marked organ system I wouldn‟t even think of it like that. It makes me immediately think about the function of the person, and in the childhood cases I think of extreme Audio Associates (301) 577-5882 things being really horrible, marked being bad, less than marked being, you know, not terrible but still something. You know, I sort of think in those kinds of terms. But obviously what we‟re trying to do in the disability system is make things that are very subjective into some kind of objective form so that we can be consistent, and this is obviously the challenge of it. DR. EIGEN: Right. Does anybody else want to DR. LAURITZEN: comment on, a physician or anyone, about -- what‟s the question? If a moderate organ system means something? MS. MINNIGERODE: term. I mean, Well, moderate is an okay I don‟t think you‟re going to be able to write a listing that tells us exactly what we need to know. DR. LAURITZEN: will go on the record. MS. MINNIGERODE: DDS. Lana Minnigerode from the Say who you are again so it I don‟t think you‟re going to be able to write a listing that tells us as physicians exactly what moderate is, especially in these diseases processes with their variability. Barry. So I think that‟s as good as you can do, It‟s so hard. I mean, it‟s hard. The other thing I wanted to point out was that in both the -- all the HIV and the congenital immune disorders is that the people are being hospitalized less and Audio Associates (301) 577-5882 less for these diseases for two reasons. One, managed care, they‟re sending an IV nurse out three times a day to do home IV antibiotics rather than put them in the hospital because it‟s cheaper; and, two, because there‟s bad bugs in hospitals, folks, and you don‟t want to go to a hospital. You don‟t want to die in a hospital, and so, you know -- so the listings have to reflect that level of severity, but it‟s no longer hospitalizations. antibiotics. It‟s IV, you know, home They need to get home healthcare records. MS. WEATHERFORD: Hi. It‟s my understanding I‟m Dale that this session is to give you information. Weatherford, and I‟m the mother of a CVID, which is common variable hypogamma-globulinaemia, patient. doing very well. She‟s 19 and By very well I mean that on a regular day She‟s got she feels like you do when you‟ve got the flu. gastroenteritis at all times. She has usually sinusitis at She gets her IVs in all times, and yet she‟s in college. the dorm. She has a home healthcare nurse that comes trotting in and usually calls her and asks whether she wants hamburger or pizza. So she‟s got her well trained, and she‟s doing really, really well. I wanted to back up to your statement about recurring illness or how severe or ---. It seems to me that all of our children -- and I work on a website with other parents. So I‟m not just talking just about Katie. Audio Associates (301) 577-5882 I‟m talking about 150 different children. see is two different patterns. It seems like what we One is severe infections where you get very unusual or very -- how do I call it -severe infections. You would call that severe. Anyone would call it severe. Severe pneumonia, encephalitis, things that are just gross and hideous to see in a child. But there‟s another side of it, and this is the tracks that my daughter took, and that‟s called just one infection after the other. The way we parents refer to it is piggybacking, because before she can clear the ear infection she‟s got a gastro infection, and before she can clear the gastro she‟s got this sinus infection, and before she can clear -- which means that her system is continually being pulled down, and they can only take this for long before it does become a severe infection. So it may not be unusual infections. It may be the things that a pediatrician sees on an everyday basis. It can be just one virus after another because the See, if immune system does not build protective antibodies. you catch a cold you will not catch that same cold next week, but Katie just can keep it. We can keep it in our When you family all winter, just one right after another. talk about clearing infections, David and I will clear a stomach bug in what, three days? minimum. Okay? Katie, three weeks So that‟s sort of the recurrent, the Okay? constancy of the illness. Audio Associates (301) 577-5882 DR. LAURITZEN: Great. Thank you. That‟s again really helpful to hear specific things about -- yes. Great. MS. JOHNSON: DR. LAURITZEN: MS. JOHNSON: Can I say --- about it? Yes. It‟s the same for -- yes. It‟s the same Monica Johnson with the Arthritis Foundation. for the inflammatory arthritis. I think it‟s probably the same for most autoimmune disorders, especially if you‟re taking immunosuppressive drugs. bronchitis. I cannot get rid of I have to take session after session of antibiotic treatments just to clear out a normal -- what would be a normal cold to somebody. When I was working I used to get bronchitis almost six times or seven times a year. So it‟s pretty severe. DR. LAURITZEN: Other comments? All right. I would think also, too, when you‟re saying what‟s moderate and what‟s not you want them a little vague. Right? Because when you may have this -- this is the art of the challenge I‟m sure for you, is that you don‟t want it so confined. You know, there has to be room for everybody‟s individual sort of summary of their ---. MR. EIGEN: Right. I mean, really what I‟ve been trying to get at is whether other people in the room have discomfort with the listing, and it sounds like no. Audio Associates (301) 577-5882 The answer is no ---. DR. LAURITZEN: that? Yes. Is there a consensus on It does sound like we‟ve got the language in the listing and it‟s actually already workable. DR. MINNIGERODE: uncomfortable with. The moderate I‟m not The one thing that Mr. Peters said on the Lupus listing, and it‟s true with all the autoimmune disorder listings, is that part B is made almost worthless to us unless we spend long time rationalizing equals because of the weight loss. There is nobody with a significant autoimmune disease that is not on a considerable dose of prednisone, and so the weight loss is ---. That being part of the requirement makes -- well, my MCs, when I told them I was coming to this conference I pulled my MCs in my office, and they said this is the most worthless listing in the book, in the blue book. MR. EIGEN: Yes. We got the same comment, by the way, for irritable bowel disease. DR. MINNIGERODE: MR. EIGEN: listings. Right. Which we have in our digestive I know people recommended -- we got the exact same comment from people. DR. MINNIGERODE: Right. So you‟re not going to have weight loss if you get significant disease because the rheumatologist or somebody is going to have you on Audio Associates (301) 577-5882 prednisone. MR. EIGEN: MS. : Right. Which was your point of making that an "or" rather than an "and". MR. MR. HEITZ: : Right. Michael Heitz. I‟m an adjudicator with hearings and appeals from Denver, Colorado, and I think there‟s been a trend within the agency to have more adjudications by non-medical practitioners. For a non- medical practitioner when I see the term moderate and being sort of an anal attentive attorney I‟m thinking moderate is not that precise if we‟re having non-medical people make a determination at step three and the goal is to make these so that we can have consistency at all levels of adjudication. So that if an attorney comes in and gets the records if they have the data they should be 95 percent certain that no matter who they bring it to is going to reach the same conclusion. I think when you have terms like moderate that If you look at the 14.08N aren‟t defined it‟s problematic. there you have marked, but as we talked about earlier marked is a term we‟re somewhat familiar with from the mental listings. You --- the activities of daily living, Terms of art we‟re concentration, persistence in pace. familiar with the mental listings, but moderate -- I mean, Barry, you and I have had discussions on the 4734, the Audio Associates (301) 577-5882 mental RFC form. It‟s defined there. It‟s not defined anywhere else, and if you just say it‟s less than marked and more than not severe you still have a gap that‟s real wide to drive it through, and that‟s where you get the subjectivity of interpretation. Then at one level they‟re afraid to do a meets or an equals because it‟ll be returned by quality assurance. more consistency. MR. EIGEN: Right, but let me ask you this. Does it matter? I mean, The more precision you can add, the Let me phrase the question then. if you‟re a person who has one of these illnesses and you have involvement in two or more body systems, and you have significant documented constitutional symptoms and signs of the things that we list, maybe it doesn‟t matter if moderate is --- range. Maybe it doesn‟t matter if you‟re at the low I don‟t know. Well, --- going to do it --- end or the high end. MR. HEITZ: allude back to the 1205 where it‟s the mental retardation 70 or less than and another significant impairment, which is defined as severe, which is defined as more than a minimal affect. I can live with that. But I‟d like to know that the reviewing officials are going to be dealing with that same definition. I think that‟s the problem that‟s been We‟re trying to get one book and one chronic in our agency. view and consistent ---. Audio Associates (301) 577-5882 MR. EIGEN: but -(Laughter.) MS. right? : Yes, I think it‟s been episodic, And hope they transmit ---, MS. SCHOENBERG: They tell us in law school that reasonable minds can differ, so I‟m going to differ with Judge Heitz and say that I don‟t have a problem with moderate because to me in a listing -- the context of the listings it reflects that you‟re not looking for an endstage organ damage like you are -- that the organs don‟t have to be affected at a listing-level severity. have to be affected more than ---. MR. some level. MR. GERRY: I would just say that I‟m not : We could just make it say to They just sure that many reasonable minds end up in law schools, but anyway -(Laughter.) MR. GERRY: Heitz. So I‟d have to agree with Judge Actually, see, I‟m a recovering lawyer, but -(Laughter.) MR. GERRY: No, I think it is a problem, because I think there -- it may not be a problem Let‟s put everywhere, but it‟s an invitation to a problem. Audio Associates (301) 577-5882 it that way. DR. LAURITZEN: That‟s not defined. MR. GERRY: Right. Now the more interesting I mean, what do you To use the term "moderate". question is what do you do instead. replace it with, because I think there‟s no question that it leads to ambiguity and then that can create inconsistency. The real question would be is there something you can substitute for it that would get you -- part of this is over-inclusive and under-inclusive point. That was more yesterday, but you mentioned it this morning, but -- and this is the Social Security Administration, and to some extent I think a national obsession. The idea that we shall not pay anyone no matter how marginally close to eligible they are if there‟s one possible fraction of a point different between where they are and what technically eligible is. The real question is how much time, trouble, and expense and pain are you going to go to to be sure that that happens. If you go to the idea that we can tolerate a little over-inclusion, that is it wouldn‟t be so bad -- not to pay someone who is involved in any fraud, but to pay someone who is right on the margins of whatever -- assuming for a minute that we have a really precise idea of exactly where that line is. Then you might be able to tolerate using something other moderate, Audio Associates (301) 577-5882 recognizing that, okay, in certain circumstances what you might really end up doing is making allowances you wouldn‟t make for another six months when the facts have changed. MR. EIGEN: we said yesterday. MR. GERRY: Right. That‟s kind of like what Yes. I know. I think that‟s right, and I think -- my sense is that that‟s probably the right direction to go when you get a term like this, but I‟d agree with Michael that -- I think we have to go back systematically and look at those decisions and, you know, even if there are reasonable minds in law schools I‟m not sure how many of them get into our General Counsel‟s Office. So it would be useful to go back and look at this and -(Laughter.) MS. tape was? (Laughter.) MR. GERRY: Oh, I think it‟s fairly well : Yeah. And your name for the known I think that, but -- I think that‟s part of what we‟re doing here. I mean, I think your point earlier, which is really one of the more powerful points, which is when talk about real people and you talk about real situations, and what you‟re really doing is talking about minor -- slight, minor differences in areas that are very hard to assess Audio Associates (301) 577-5882 anyway. Then you recognize over time that distinction is probably going to be lost and you‟re doing this, making this decision at a point in time. I think what we have to begin to ask running a program that now costs, the disability program by itself, probably slightly more than $6.5-billion a year to run, is how much are you willing to spend to keep somebody who is going be eligible two or three months later from being eligible now; and I personally don‟t see a point in spending very much. MS. : Especially when we‟ve heard what it costs on the other side today I think. MS. ELIZONDO: Arthritis Foundation. Hi. Meghan Elizondo with the So the word moderate, I think the problem with the word moderate is to a medical person moderate means something in terms of mild, moderate, and severe, and they‟ve like -- they have trained. You, know, they‟ve been trained to know what those scales mean, and then it sounds like for on the administrative law side it could mean a wide variety of things. So moderate, I guess you have to decide, you know, what -- it‟s like using technical jargon in everyday language, and it‟s like a different word. language I think. You know? And so you have to define the Because we‟ve had experiences where, you We applied. We had really similar know, there‟s two of us. symptoms, similar documentation. You know, all these Audio Associates (301) 577-5882 similarities, and one got approved and one got denied, and then you go -- the other person goes to the end of the rounds and he sees an administrative law judge. he‟s been approved. Oh, and now So that‟s why I think the language does become a barrier to something that‟s otherwise a simple -it could be a simpler thing than trying to go through all those rounds, and that‟s an expensive thing to do is to keep administratively determining that. DR. LAURITZEN: I sort of like the idea. Should we hear again what people think if you made it like the 1205D, that where you have the extra impairment that has to -- I mean, is severe in the same sort of range as moderate so that we could -MR. EIGEN: It‟s apples and oranges. It‟S apples and oranges though. The severe in 1205D is a Here measurement of functioning, like work functioning. we‟re talking about a moderate impairment of an organ, and that‟s the thing that I just don‟t -- I can‟t wrap my mind around that. DR. LAURITZEN: MS. ELIZONDO: moderate? MR. EIGEN: That‟s what‟s it says. Yes, and Yes. I think take out ---. Do people --- medical I don‟t know what it means, but that‟s what it says. MR. HEITZ: Barry, Michael Heitz again. Audio Associates (301) 577-5882 Deferring to the doctors, but if you were just to take off that last sentence. It almost seems to a lay person if you‟ve got the diagnosis established by using the diagnostic tools and then you have demonstrable involvement of two body systems, that sounds pretty darn ---. MR. EIGEN: Well, right. Well, that‟s what I was saying, maybe it doesn‟t matter. MR. HEITZ: Just take off that last sentence. MR. EIGEN: MR. out. : Could be. Could be. Just take the whole sentence What does the sentence mean anyhow? MR. EIGEN: Right. I mean, it already says Right. you have to have involvement of two organs anyway. DR. LAURITZEN: good. Anybody else? Well, that was I thought that was going to be a no-answer question. (Laughter.) MR. : Well, we fooled you there, didn‟t we? DR. LAURITZEN: lead to something here. right. Somebody else? All right. Well, all roads All I‟ll just go to number two. Oh, our break. Okay. Is it 3:00? So it‟s a little after 3:00 so be back in 15 minutes, 3:15, 3:20. (Whereupon, a short break was taken.) DR. LAURITZEN: All right. We‟re going to Audio Associates (301) 577-5882 reconvene here. Okay. I have two quick procedural points, One is that -- okay. two quick sort of procedural points. We‟re going to have to whistle again, except then you‟ll find out it wasn‟t me. to whistle like that. I‟ve always wanted to learn to how Two points. One is no one is going to be allowed to leave the room without handing in their questionnaire, and we‟re not sure what the -- please fill out your questionnaire because it seems that this is a great invention not only to the conference that people that are listening, and this gentleman over here is recording everything and the names. People here want the feedback, So please fill out your and so let‟s give it to them. questionnaire and turn it in to -- I guess there‟s a box or something. MR. : Outside. Outside. Okay. And the DR. LAURITZEN: second point is that if you have something to say raise your hand high so I can see where you are so we can get the microphone to you without making our people run all around the room. So all right. So that was great. That was question number one. (Laughter.) DR. LAURITZEN: already. I feel like I can stop The I think a lot of things are sort of winding. answers sort of wind their way in and out of the various Audio Associates (301) 577-5882 questions, but just to stick in a somewhat orderly process I‟ll just read question number two. "Our immune system listings address the differences between the effects immune system disorders have on adults and children. them sufficiently? Do we address Do we need to change how we address Ooh, a hand shoots up right these differences in any way?" at the front there. Great. MS. VOGEL: Well, I mentioned this in my presentation, but for children you have the listing of congenital immune deficiencies, and either it should be taken out or there should be some acknowledgment that there‟s a delayed onset of clinical symptoms. So I don‟t know which is the easier way to do it, either to make it equal to the adult or make it -- because many of them, it may be delayed for decades in some of the patients. MR. EIGEN: mean by that? Would you say more about what you I‟m looking at it now, so --. MS. VOGEL: So the comment is taking out the -- either taking out the congenital part of qualifying it somehow. MS. difference? MS. VOGEL: Because some of our patients are : And why does that make a not getting listed as disabled because their not showing -they‟re not symptomatic immediately they‟re not being Audio Associates (301) 577-5882 considered. It‟s they‟re saying that it‟s not congenital. I mean, they‟re saying that you have to have a congenital disorder, and it has to -MS. way back. MS. VOGEL : Exactly. Exactly. And for : It has to show that it started primary immune deficiency disorder sometimes it doesn‟t show for decades. MS. MR. EIGEN: names? : Okay. All right. So why do they have different Is Why do the adult and child have different names? there a medical reason? MS. : What‟s the question? The question is why do -- I‟m DR. LAURITZEN: going to -MR. EIGEN: I‟m just asking. I wonder why Why do the the -- I don‟t actually know the answer to this. adult -- it‟s 14.07 and 114.07 if you want to look them up. The adult one is called immunoglobulin deficiency syndromes or deficiencies of cell-mediated immunity except for HIV. Could the child have the same name? MS. VOGEL: MR. EIGEN: MS. VOGEL: MS. : Yes. Definitely. Well, that‟s an easy fix then. Get rid of it and make it equal. Oh, wow. That was good. Audio Associates (301) 577-5882 Progress. (Laughter.) DR. LAURITZEN: Great. Thank you. Any other questions about our comments about the child? I‟m always interested in this being a pediatrician doing the DC claims. It seems like the children‟s stuff is usually a little easier in this regard because we have the fallback of the functional equivalents. So I read through them and nothing Did stood out glaringly to me, very quickly reading them. other people? listings? Are other people looking at the childhood Do we have any DC people in here or policy people Do you guys divide that are specific for childhood stuff? it up any? MR. : We don‟t. Okay. DR. LAURITZEN: about the childhood? stands out? back. Okay. Okay. Any other comments Any comments from our mother that All right. If things come up we‟ll come Question number three, "What are the variations in favorable and unfavorable responses to treatment?" And I read that question and I thought what is -- what are you trying to ask? MR. EIGEN: Actually I think we covered it. That was -- I don‟t know if it was the main theme of today, but it was certainly way up there. It was all that stuff Audio Associates (301) 577-5882 about can you really get better, the effects of the treatment, the effects of having to take the treatment all the time and all that stuff. so I think we covered it. DR. LAURITZEN: Okay. So it sounds like the So that‟s what that‟s about, variations are huge and unpredictable. MR. EIGEN: It‟s not ---. And the gentleman in the DR. LAURITZEN: back? MR. LEACH: Program again. Hi. Bill Leach with the Access I think it‟s I just had one quick point. been gone over and over and over again today about the effects of treatment, but there‟s one particular area that comes up a lot with immune deficiencies, and that is the situation where they are using constant courses of antibiotics. Frequently in order to avoid drug resistance So what‟s happening they‟re having to rotate antibiotics. is that your getting variations in response because they may do better with one antibiotic than another, but they have to go to the less effective one periodically because if they don‟t they become resistant to the one that helps them. So that‟s another sort of issue that goes into the variations of responses. The nature of immune deficiencies in of themselves is such that it dictates that they sometimes have to use less effective medications simply because that‟s the Audio Associates (301) 577-5882 only way to be avoid becoming resistant to the one that actually helps them the most. I‟m sure that got addressed in the HIV section, but it equally applies to the primary immune and autoimmune folks as well. DR. LAURITZEN: Yes. This is a comment right up my alley because I work in my other job at the San Francisco General in the county urgent care clinic and we see hundreds of patients a day with these issues of, you know, just all of the different antibiotics. Made worse also by insurance companies now are not necessarily covering. We now get calls from the clerk in the pharmacy saying -- asking for the doctor and "Have you considered using," such and such. So there‟s also other political You insurance issues of what medications are being covered. know, if they won‟t we have to fill out then 10 forms in order to get the antibiotic that you know is going to work for the person. resistance. cases ---. So big issues of, you know, drug It‟s a huge topic and especially in pediatric Any other comments? We are going to start off with our big boom here and then fizzle out ---. (Laughter.) MR. : Go out with a whimper. Number four, "Are there I DR. LAURITZEN: functional requirements we should add to our listings?" wrote down Lupus fog from your talk, and I also wrote down Audio Associates (301) 577-5882 as far as the whole functional assessment a lot of people brought up questionnaires, forms, different things that needed to be used and how do we make scales. I personally would be interested to hear from some of the arthritis people about how to actually -- a lot of comments on fatigue is, you know, not their usual fatigue, and if you all have any ideas about rating fatigue. MS. ELIZONDO: Well, one of the things that we had talked about was that the ACR, the American College of Rheumatology, has scales already, and that it would make sense to use those scales since that‟s what the doctors are familiar with. I think that in some of those scales they could fatigue and they count pain and they count -- they have, but then they have variations on the number of joints involved or the severity of swelling and pain the joint, how many main joints, how many peripheral joint. It‟s like the ARC 10 and the ARC 20, but they‟ve got scales that they‟ve worked on to rate severities of arthritis of various -- I‟m not sure how many forms. I think maybe it would include psoriatic, rheumatoid, and OA, but I‟m not sure how -- if they apply it things like Lupus and Scleroderma and ---. DR. LAURITZEN: Right. It does seem like maybe we don‟t have to constantly recreate the wheel, but we can borrow from -MS. ELIZONDO: Yeah, and we want to use Audio Associates (301) 577-5882 something that the doctors are familiar with, because anything you do extra to ask the doctors to do is going to be a big drain on them and they may not complete it. DR. LAURITZEN: I want to say something about that before the day is over just from the other side of the track. In the back, did you have a --? MS. DOAK: Bonnie Doak with the Immune I find it very subjective for I‟m a patient now. I came Deficiency Foundation again. our community to rate fatigue. here from Santa Cruz today, but I already cleared my schedule for tomorrow to not leave the house. So look well, et cetera, but tomorrow I will be paying the price; so I don‟t know how you would -- I‟m interested in seeing those, the graphs or the schedule that she said they use, because I don‟t know how that could be rated. MR. EIGEN: One of the things that came up yesterday was, does this mean anything to anybody here, quality of life scales that the HIV guys were talking about? Some of them were validated sort of scoring instruments. MR. PETERS: using that in Lupus now. Health quality of life. They‟re I‟m sorry. I just said the Health quality of life scales, they‟re using that in Lupus now in a lot of clinical trials to rate, you know, how they feel and so forth. MS. : Thank you. Audio Associates (301) 577-5882 DR. LAURITZEN: I think there‟s always the question about how you get functional information, and I‟ll just share a tip from one of our -- in region nine, one from the Hawaii DDS office who are well known within our region for their ability to really be particular in how they develop and rationalize their cases. So I‟m going to This compliment them here, and Yolanda is nodding her head. was an idea that they came up with that I thought was a nice one in terms of trying to initially if you were going back to the treating physician to try to get functional information. That usually people are talking about sending a questionnaire, and then there‟s a big debate about how long should the questionnaire be, and long enough to get the information, shorter enough for somebody to be willing to fill it out. What they did is they made a list of functional questions about various things and put it on a database somehow with the computer so that then on any given case they can go to their sample questions and pick, oh, number 1, number 7, number 14 applies to this case. So then instead of sending, you know, a treating physician a fourpage questionnaire they‟re sending them the three questions that they felt like they really needed for the information for that particular case. I thought that was a good idea. So sometimes just sharing what works I think between various offices, you know, I think there‟s no doubt lot of people Audio Associates (301) 577-5882 have tried to figure this out because this is sort of the nuts and bolts. Right? Somebody back at my table back here, and I can‟t remember who, was going to may say something about the difficult of getting functional information at the -- was that at the field office level that you were talking about, or trying to get more information from when the claim is being taken that it was hard to get more --? Okay. Maybe I misheard what was being said. MR. SKLAR: from SSA in Baltimore. Hi. This is Glenn Sklar, again Nobody is. I do want to throw down a I think it‟s placeholder on the issue of terminology. really important that if there are specific medical terms of art that are different than SSA terms art -- be it marked, severe, and how we define those -- we really need to get on the same page. Again, it‟s very unclear when you get a case Is it coming from the It can come who is supplying the information. claimant? Is it coming from the physician? from any number of sources, and then you place on top of that another of complexity when you don‟t define what these terms precisely mean. So I think that‟s a very important Not only point, and I certainly wouldn‟t want to lose that. for this listing, but for others as well. help in that regard as well. DR. LAURITZEN: Right. So we welcome any Help on not mixing up Audio Associates (301) 577-5882 terminology. Is that the main --? MR. SKLAR: Between -- In particular squaring these terms with medical terms of art that have specific meaning to individuals practicing in the medical community. DR. LAURITZEN: I would say off the top of my head, and please, any of the other physicians correct me, that some of these severe, marked, don‟t have a given. know, they don‟t mean a specific thing in medicine. Certainly there‟s a lot of things that do, but I don‟t think severe and marked and extreme and moderate. You know, those You aren‟t sort of medical terms that are used or that have any given meaning in my experience, and I think -- does anyone want to say something different? To me I think the important thing is understanding what‟s in the listings and what a definition for Social Security is. the biggest issue. It seems to be I mean the only other thing that‟s coming into my head is like when you have like the MSS person who then is saying, you know, somebody is severe or somebody is marked, and they may be using a different definition. Some people in California in the speech and language areas have actually created forms where they‟ve given the Social Security definition of marked impairment to the provider, and then they -- you know, they give the test, and then back comes the thing saying, you know, it‟s a marked impairment based on this, you know, this criteria. Audio Associates (301) 577-5882 I don‟t know how you all feel about that. I mean, it seems to work because it‟s very specific, and I don‟t know if that‟s -MR. EIGEN: definitely for that. source statement. opinion. DR. LAURITZEN: Okay. I think this is the No. We‟re ---. Yes, we‟re By the way, MSS stands for medical It‟s our lingo for asking for a doctor‟s time I‟m going to throw in just a little bit of editorial about getting information from a treating source, and being one I was in a practice for a number of years and even now at the county hospital. I think most physicians don‟t know much about disability and don‟t know much about the Social Security program, and it‟s not out of anything but, you know, lack of training, lack of information, lack of awareness, and a million other things going on. So I think that -- I mean, I also can‟t -I‟m not a big computer person. I can‟t imagine someone asking me to now email people, and so just for the other side of that; and I‟m sure there‟s lots opinions in the room about trying to get hold of physicians, but I think if you have -- I think you shouldn‟t just assume that they‟re not calling you or they don‟t want to talk to you, or they‟re this or this or this. I think it‟s more often an issue of time and an issue of knowing what information you‟re even Audio Associates (301) 577-5882 asking for. I‟m actually doing some training with the residents at San Francisco General just next month about disability and about, you know, making sure their patients have applied who, you know, are who need it, and also how to give functional information. Because also people say "We need functional information," and if we all had a penny for using that word we‟d be rich. But what does that really mean? So I think if you call someone it‟s better to have very specific things that you‟re asking them. You know, do you need to know how often is the child out of school or how often is the person out of work? Or things that are very specific, because in a business practice if that person may be having 40 patients in a day and then you‟re calling and saying -- you‟re catching him in between a patient, and then you‟re saying, "Well, what‟s the function of this person like?" You know? They‟re going to be lucky if they can remember the person, and they‟re getting the cart and getting -- you know, now if you have someone that‟s been seeing you frequently that‟s great. But the other thing that‟s happening in medicine is the number of primary care physicians is shrinking in case anybody hadn‟t noticed. (Laughter.) Audio Associates (301) 577-5882 DR. LAURITZEN: There‟s not as many treating physicians anymore that have this longitudinal kind of stuff, even when we‟re talking about people with good access to medical care. So that just the pool of that good old doctor that everybody wants who knows you and understands you and knows the various things and could give this kind of information is shrinking. different topic. So, you know, that‟s a whole But I think that the more specific that you could be, you know, in terms of what you‟re asking them and not just say, "Well, how is the person doing?" And maybe other people can suggest specific questions to ask a treating source. MR. HATFIELD: Dave Hatfield, OHA. One of the things I know there‟s been some talk in OHA and what had been suggested is it seemed to me that doctors respond better as to what their patients can‟t do as opposed to what their patients can do. You know, SSA tends when the medical source statement and others are saying how much can this person walk, how much can they stand, sit? I‟m just curious what the physicians in this room would respond to an idea of actually asking the sources what they can‟t do as opposed to what they can do. DR. LAURITZEN: MR. HATFIELD: DR. LAURITZEN: To ask what they can‟t do? Right. Can‟t. Yes. Anybody want to pick up that? Audio Associates (301) 577-5882 DR. MINNIGERODE: them. up? I do that. I don‟t lead I just say, you know, is that --- knee going to hold Is he going to stand and walk six hours a day or two You know, and a lot of them have been tricked hours a day? by medical consultants calling from Social Security and thinking that they were allowing their patient, and then they used it again the doctor and denied the patient. That has happened, and it‟s making them more and more goosey about making source statements. allows them I‟ll tell them. So if they ask me what You know, I‟ll say it has to be reviewed by a federal review agency, I‟m not making the final decision, but yes, they want to know. DR. LAURITZEN: Other comments? I think it would be easier to say what someone can‟t do, because that‟s sort of what you‟re hearing most of the time as a physician. You‟re hearing a problem, and you‟re hearing, you know, what people can‟t do. So I think physicians would be in general more able to give that kind of information, because you don‟t see a lot of what people can do because they‟re out doing it and they‟re not coming to see you. MR. HATFIELD: Right. And ultimately it‟s the Commissioner who decides what the person can do, and so by asking the doctor what they can‟t do we‟re making -- if we can make that decision ---. It would be almost a repetition it seems to me to ask a physician what the person Audio Associates (301) 577-5882 can do. It‟s almost asking them to do the functional -- I In asking other doctors that seems to be the mean, but yes. response is I can definitely tell you what my patient can‟t do. Because they tell me what they can‟t do or I can see But to ask me what they can through science and findings. do or --. DR. LAURITZEN: Well, I think there is a stated or maybe sometimes unstated conflict, and if you are the treating source for someone who maybe you -- maybe you‟re somebody who knows the listings really, really well for some reason. Like me, who does both jobs, you know, and if someone called me and I as the pediatrician I‟m trying to be the advocate for my patient and, you know, might want them to get disability and yet maybe I happen to know that they‟re really not quite that bad. bind as a physician. So you‟re in sometimes a You know, are you an advocate who -- where do you draw the line in terms of how much information you give or what information you give. You know, I just sort of throw that out because, you know, most physicians are trying to get their patients services. MS. ROECKER: Security. This is Sue Roecker from Social One other aspect that we‟ve heard in similar meetings, especially I think for children as patients, is that the treating physicians will make notes that say, "Johnny is doing fine. Johnny is doing better." Audio Associates (301) 577-5882 It‟s not that Johnny is well or Johnny has been cured or Johnny -but that every little micro-improvement, you know, and just be very positive and to have some positive report and be optimistic and so forth. It‟s noted and, you know, it‟s that kind of treatment that is just trying to be very encouraging. So that you get those notes that, you know, You don‟t continue to every time you so-and-so is fine. have a visit to list all the problems or all the symptoms --. DR. LAURITZEN: common thing. MS. ROECKER: So that you get these charts or Right. I think that‟s a very these records that, you know, on one hand -- you know, and then you get a medical source statement that says, you know, "My patient can‟t work." But you look back at the last, you know, 12 months of office notes and sounds like you‟re better, better, better, or you‟re doing fine, or many of these other things are noted more than maybe being one ---. DR. LAURITZEN: I think that‟s a very important point, and because those people -- I mean, physicians are writing the notes for themselves. Now everybody is using them, but they‟re also maybe referring to their own context, doing better for that patient. So that‟s again where you if you really need different information you‟ve got to ask for it. Did you --? Audio Associates (301) 577-5882 MR. LEACH: One suggestion. This is Bill Leach at the Access Program. have, the One suggestion that I would --- source commonly used to gather the information we‟re talking about is something called the medical assessment of abilities to do work-related activities, and it‟s broken down into physical and mental. One thing that would go a long way toward resolving some of these issues we‟re talking about is just to put a question on that questionnaire that says, "Based on what you just told me, is this consistent, or do these symptoms wax and wane?" Because many times the doctors and will look at it and they‟ll say, yes, on occasion the person can stand, walk, bend, lift, carry, but they don‟t get to this thing that we‟ve been talking about of what about the times when they can‟t. I think you could just put a question in there that draws out is this a stable kind of situation or is this one that varies over time, and that can get at a lot of these issues in a form that the doctors will at least fill out because that‟s only two pages. DR. LAURITZEN: idea to me. MS. WEATHERFORD: that my daughter is a liar. I just wanted to comment Yes. That sounds like a good She says she‟s fine, and when she says she‟s fine that‟s our communication, that‟s our Audio Associates (301) 577-5882 secret code that "Mom, I‟m going to make it. I‟m going to make it. questions." If it kills me I‟m fine, so don‟t ask anymore And she lies to doctors that way, and only one doctor in her lifetime has managed to penetrate that and say, "I understand what fine means to you." So I want you to know that many of these people who are coming and telling you that they disability are really, really hurting to say that word, because disability to Katie is saying, "I can‟t make it." And she‟s been fighting for eight years to never I just want you to keep that say the word, "I‟m disabled." in mind. MR. EIGEN: and support it. Yes. I have to comment on that It‟s a very important issue in the SSI program for children that we wrestle with constantly, because to qualify you have to tell a child to be disabled, and it‟s very bad and that‟s not how children are raised in any other situation except for ours. When they go to school the whole point is success, and that‟s a very important point. DR. MINNIGERODE: Also I tell all my medical consultants to be very careful, and I think we need to develop this specialized cadre of consultants if we ever get to that where we can send an email. around. Maybe you can turn it I mentioned it here at our table and the other physicians here said the same thing, is that doctors are by Audio Associates (301) 577-5882 and large an over-achieving group. They are very proud of their own ability to heal patients, and there are some doctors that don‟t want to think that any of their patients are disabled. They think that a 62-year-old guy with bilateral --- who was previously a plumber can go down to the Quick Trip and work, and he can‟t, but they don‟t want to give me a medical source opinion that will allow him to have social security disability. A really great example is my own nurse clinical practitioner has metastatic breast cancer to the bone and had been working with that bone --for two years because she didn‟t have any ---. Now her hip was to the point it was about to fracture through and she was going to have to have a procedure on it, and she called me crying because her oncologist told her she would not qualify for disability. doing this now." She said, "Lana, I know you‟re I said, And I said, "He told you what?" "You‟ve been working meeting the listing for two-and-a-half years." You know, but he told her that her treatments She hadn‟t had all the horrible side weren‟t so bad. effects of cancer that everybody else had had, so she was not disabled. So we‟re going to have to be a little careful about who we solicit our -- I mean, I know we hear all the doctors, hear about all the doctors who think that all of their patients are disabled, and we‟re always aware of that at DDS, but I think you have to be careful of the doctor who Audio Associates (301) 577-5882 thinks nobody is disabled as well when you‟re solicit treating source opinions. DR. LAURITZEN: Yes. It‟s good to know both Just to know so you other people‟s and your own prejudices. know where -- how to separate them. MS. ELIZONDO: What I wanted to say is that - - and people have kind of alluded to it, but there is an attitude from both the patient and the doctor that if you say disability it‟s all going to go to crap. -- sorry. But usually by But usually by the time you get to that point things have already degenerated and the doctors -- I mean, the doctor‟s goal is to get you better, and your goal is to not be sick. So -MS. : Collusion of ---. Yes. So there‟s a collusion I‟m fine." Or, you MS. ELIZONDO: of, you know, you‟re saying, "I‟m fine. know, "Oh, hi. I was just here to visit," and like you‟re I got go." And then here for like 10 minutes, and "Okay. your like limping out the door, and then you go home and then like the next day you‟re like, "Oh, my God. I didn‟t tell him about this," and "I didn‟t tell him about this." Then the doctors, you know, their goal is, "Oh, I‟m making this patient better. I‟m giving them everything that I can possibly give them," and they‟re going -- they sound okay. They sound cheerful. They sound positive. Audio Associates (301) 577-5882 So everything must be going fine. DR. LAURITZEN: ---. MS. ELIZONDO: I think though that doctors Yes. I think there are very aren‟t very well educated on what disability means and not - I mean, it‟s not anything against doctors. You know, there‟s no time for them to train on that, and that‟s not really what their main goal is. not to put people on disability. DR. LAURITZEN: I think the doctors that are Their main goal is heal, best at that are physical medicine and rehab doctors, of which -- is that what you are at our table back there? So there are. Yes. You know, there‟s different physicians within -- I was a physical therapist for 10 years before I went back to medical school. So I have that functional, but it‟s most people don‟t until you get into the rehab kind of stuff, or you just find people who are more open-minded or have -- I think most of the time when somebody themselves has a chronic problem then they‟re able to start thinking in that way. So I think the more information that gets out for everybody the better because there‟s always things in the system that go against people really understanding. MR. EIGEN: And of course that raises the issue we haven‟t talked about a lot today, about the other kinds of sources of information. Various kinds of clinical Audio Associates (301) 577-5882 social workers and -DR. LAURITZEN: always put in a plug. didn‟t I think of that? Yeah. Yes. Physical therapists. I We probably should -- why Under functional information, I mean, that‟s a lot of people who are getting OT or PT or --therapy or home healthcare or -- those are the people who are working hands on, whereas -- who really know the information much better than the physicians usually. MR. HEITZ: Well, we had heard a lot When I was doing a yesterday about physicians assistants. hearings in my --- it was -DR. LAURITZEN: MR. HEITZ: Nurse practitioners. -- hard to find a single doctor Maybe we -- oh, this is at the Indian Health Services. Michael Heitz from Denver. Maybe we should consider some sort of a training issue or something just to revisit this issue of other sources. I mean, the --- talks about Other sources are unacceptable, acceptable medical sources. they‟re other sources, but maybe in -- particularly in the introduction to the mental listings they really emphasize how other sources are so important, and maybe particularly in the immune disorders it‟s something that can be emphasized for our adjudicators. DR. LAURITZEN: Because there are a lot of rehab-oriented people --- the whole branch of rheumatology, Audio Associates (301) 577-5882 immunology that then goes towards -- at least in pediatrics, because early on people are trying to, are more active. But, you know, that information is out there. MS. WEATHERFORD: I mean, for school children that would include checking the teachers. DR. LAURITZEN: MS. WEATHERFORD: DR. LAURITZEN: Yes, yes. This is Dale Weatherford. We haven‟t gotten into -- that‟s sort of the mantra of at least the DC claims is getting the teacher questionnaires and getting preschool questions and daycare questionnaire. Yeah. I mean, we all know the people who spend the time with the kids are the ones -- or the people, are the ones who are going to know how they‟re doing. I was aware of Sarah this morning talking about -- or maybe it was yesterday, that she got in her cases when she was developing for HIV cases that she got information from as many as 10 or 15 other people who knew the claimants, and that‟s where she got the functional information. You know, and I think in Social Security You know, this sort that‟s hard because we‟re quite sure. of who is being objective, who is being -- and, you know, that‟s the same thing in any of these cases. we‟re taught to ask our patients. patients. Right? In medicine Believe our If In pediatrics we have to believe the parents. you don‟t believe the parents you‟re a goner. Audio Associates (301) 577-5882 You know, and so then you get into, you know a system like this and people start being "Who is being objective?" answer to that is. And I don‟t what the Probably -- probably we‟ll ask Barry. (Laughter.) MR. EIGEN: I don‟t the answer. Getting as much information - DR. LAURITZEN: --. There‟s no answer, but obvious the more information you have about people that know the person, and the more information you have about -- from the person the better. MR. EIGEN: claim. I mean, typically in an adult In some sense it‟s actually easier to do children‟s claims because children typical are observed by a bunch of people. You know that. So we always make a big deal about You go you don‟t just have to go by what the parent says. by what the teacher says, too. You have to find that out. But If they go to scouts you have to find that out. typically for an adult we‟re not even aware of who the other people are who know about the person. I mean, Sarah must go out and find out who the person‟s friends are and all that. We don‟t even have that information to start looking. MS. DOAK: I‟m real interested in this part right now, because what you said I think you really hit something with me anyway as an adult patient in that I go to my physician and he‟s more interested in getting a smile out of me and telling me a joke. I shouldn‟t say more Audio Associates (301) 577-5882 interested. But, you know, he wants to see Bonnie all happy and perk me up, and so I go along with it because I get caught up in it. But who is most apt to see the real Bonnie She‟s going to see me cry and It‟s just the is a home infusion nurse. she‟s, "How are things going, Bonnie?" interaction is different. So also when you say a teacher But I do think that for children I think that‟s excellent. there are other sources that maybe do need to be looked into here like the nurses. You‟re going to see them more. So whatever reason as an adult we tend to be more ourselves with these other medical people than we do the doctors. should be, but that‟s the way it is. DR. LAURITZEN: tales as a physical therapists. Yes, yes. I heard many more It I probably knew my patient much better than I do now as a physician. MR. LEACH: Access Program again. This is Bill Leach with the I just wanted to trade off what the I‟ve gotten nursing gentleman over here was talking about. notes before from infusion nurses that are doing the home infusion, and they are lightly regarded at best by the adjudicators that I deal with. They are not physicians. They‟re not considered to be given a great deal of weight. Particularly when you‟ve got a consultative examination from a physician from the agency going the other way. Then the nurse‟s notes don‟t carry a whole lot of weight in the Audio Associates (301) 577-5882 typical evaluational situation. The other part I wanted to talk about, about children, this is one that is particular to again the primary immune deficiency kids. When we talk about there are other outside sources that are objective about their functional limitations, many immune deficient children end up having to come out of the public school system and be home schooled because they are so susceptible to infection that they can‟t go to the public schools anymore. They stay sick all time, and so we get thrown back into this pit again of "Oh, it‟s just the parents saying the child is limited," because that‟s who is doing all the observation. The child has no social functioning outside of the home, and so there is no other observer other than the mom, who obviously since they are going to be, you know, the payee does have a financial incentive to have the child found disabled as opposed to a teacher in the public school who has no interest in the outcome. So it is a problem. I don‟t have any suggestions for you on that. I‟m just saying it is a problem and a concern because very often we end up in situations where there is no objective outside observer other than the caretaker parent. DR. LAURITZEN: I think one suggestion, the obvious suggestion is the more people know about illnesses the better, because you couldn‟t be the person reviewing a Audio Associates (301) 577-5882 claim for somebody with severe, you know, combined immunodeficiency without knowing that that‟s bad, and then you go -- you know, you start thinking like that instead of "Oh, here‟s somebody trying to scam the system." You know, so I think the more people know about the conditions and what they look like in conferences like this the better. Okay. That was good. Are you guys happy with are getting enough policy tips for this table here? (Laughed.) DR. LAURITZEN: glazed. They‟re looking a little The fifth question I think we‟ve been talking about "The constitutional symptoms and the signs, all through. fatigue, fever, malaise, weight loss --," or weight gain, which is --- the point, "should we include in our listings, and how should we consider them?" say about that? Do people have more to That seems to be the one that is really the Right. Yes. take-home message, which I think we‟ve gotten. Question six, "What is the effect of treatment on the length of disability?" that question either. MR. EIGEN: mean? DR. LAURITZEN: Maybe you‟re making people -I can‟t remember. What did it I didn‟t understand maybe this is --- was talking about -- with some of the new biologics, but then people get better for a while. Audio Associates (301) 577-5882 So they look better, and so maybe there might be a duration issue or -MS. WEATHERFORD: I certainly want to address Just that once our that from the primary immune deficiency. children are on IVIG then they cannot be tested for IGG levels because they‟re getting a false positive, and our children would have to go off of IVIG for three months before they could be they tested. don‟t want to even go there. In those three months, I I don‟t want to know what‟s So our children are going to happen in those three months. not something that we want to be taken off of IGIV. DR. LAURITZEN: Right. It starts sounding like an uncontrolled study ---. MR. EIGEN: meant by that. Paul? MR. SCOTT: Just a very general question ---. We just wanted to know any I just can‟t remember what we It was a very general question. ideas on how treatment affects the length of disability. MR. EIGEN: I mean, I have to say it sounds like to me like with very rare exceptions these disorders aren‟t going to get better, so I don‟t think this is going to be an issue in this body system. MS. ELIZONDO: DR. LAURITZEN: MS. ELIZONDO: Is that wrong? I was just going to say -Say your name again, too. This is Meghan Elizondo with Audio Associates (301) 577-5882 the Arthritis Foundation. I was just going to speak to the fact that, you know, there are a lot of new drugs coming out that are -- you know, they‟re called biologicals. based on treating genes, treating cells, and -DR. LAURITZEN: what you call that? MS. ELIZONDO: MS. : Tumor necrosis factor. Okay. Okay. Do you want say what the TNF, They‟re MS. ELIZONDO: So, and then there‟s another one called interleukin-1, and they‟re just cells that are -- inflammation and then -DR. LAURITZEN: what the letters were. MS. ELIZONDO: MS. : Yes. Okay. And so, you know, and the new I know ---. I didn‟t know MS. ELIZONDO: biologicals they‟re like doing tons and tons of research right now on making new drugs for different diseases that are based king of in this whole new realm. And some people do improve and some people are able to like work and function and do everything that they want to do, and then some people like us are on the biologics plus all these other medications and we‟re so like struggling to get through the day. So they aren‟t consistent medications. So I would say that the treatments, like some -- like the Audio Associates (301) 577-5882 treatments are not a consistent way to measure your disability or your functionality. It‟s got to be just based on what you‟re actually functioning as. DR. LAURITZEN: product. MS. JOHNSON: --- Joan trying the Enbrel. It Right. Right. The end only lasted for about two years where she felt well with the Enbrel. Joan had it for two years, and the efficacy of the treatment actually kind of wore off and she had to try a new biologic, and that tends to happen with some of the drugs. DR. LAURITZEN: get to you in second. I actually know -- and I‟ll I have a question for you guys that Kids has been bounced around in the DC stuff for a while. going in for getting IV gamma globulin every week or every couple of weeks, people are always ask us can we equal that to the adult listing where people are going in for transfusions where that‟s ---. So the issue is if you are having people go frequently for gamma globulin treatments how does that factor into episodic hospitalizations, you know -MR. EIGEN: the answer. ---. DR. LAURITZEN: too. Audio Associates (301) 577-5882 Yeah. You‟re being recorded, I mean, it sounds -- I don‟t know I would have to I wouldn‟t hazard a guess now. (Laughter.) MR. EIGEN: Well, I don‟t know. It sounds like something that would certainly go in the health and physical well-being. I mean, if we got that far, but I don‟t know whether it‟s an equal listing. DR. LAURITZEN: That‟s usually -- yes. MS. ELIZONDO: same thing. I was just going to say the Yes. I think that‟s right. I mean, if they‟re going to ask that about the immunoglobulin. MS. is. MS. ELIZONDO: But the same thing happens : They probably don‟t know what it with the biologics that you‟ll start on a treatment and it‟ll wax or it won‟t do so great, and then so you have to double the dose; and then you‟re doubling the dose and you‟re increasing the frequency that you take it. you‟re like doubling the dose again, and so -MS. : Right. I mean, are those indications Then MS. ELIZONDO: of severity or are they just indications that that drug just doesn‟t match your system? DR. LAURITZEN: Right, and I would think the point is often like with the seizure listings where people - you can‟t assume that a low level of a drug means the Audio Associates (301) 577-5882 person isn‟t taking it, because there‟s so much variability in each person‟s biology. MS. ELIZONDO: DR. LAURITZEN: Right. That, you know, it‟s going to be variable between people, but variable in the same person as well if I‟m hearing you right. MS. ELIZONDO: So I think treatments are kind of it‟s -- the question is, you know, what is the effect of treatment on the length of disability, and I would have to say that you can‟t -- the treatment should not be part of the consideration of -DR. LAURITZEN: Right? It‟s not as much. MR. EIGEN: And I think it‟s usually not. I mean, it‟s mixed in. No. I mean, it depends on what There are certain you have and what the treatment is. things you have that you can have treatment and it can make you better, or well enough to not be disabled. on what you‟re talking about. DR. MINNIGERODE: Well, I think we‟re looking You all have JRA, The older person who It depends --- select population in these guys. right? Or a very young onset ---. gets acute onset of inflammatory arthritis, usually rheumatoid, who is in their 40s, a typical 40-year-old woman who --- rheumatoid arthritis. There are a significant percentage of those who get a good initial response to the Audio Associates (301) 577-5882 Methotrexate or the tumor necrosis factor drugs, Enbrel, Remicade, whatever. It may not last, and when they apply I I mean, when you look at the don‟t think there‟s any doubt. rheumatologist --- and he has all these red hot joints X‟d through. When they apply they truly think they‟re disabled, but after three months of treatment they‟re doing pretty well, and then probably go back to a job. But then there‟s these guys who already have all these built-in underlying deformities and obviously clearly severe immunologic disease. So there aren‟t a lot of those people who when you put in that hold to make that their going to meet the year‟s duration, and many of them nowadays that we‟ve got the biologics will call up and tell the counselor to cancel their claim, they‟re going back to work anyway. I‟ve been surprised at how many of these people do do that now. I mean, it‟s just like when the HIV guys got protease inhibitors. Our HIV applications dropped off 70 percent when the protease inhibitors came out because they did want to work. So I think there‟s nothing wrong with that initial application in the middle-aged red hot rheumatoid, but I do think we have to wait and look and it, at the outcome. MR. SCOTT: Okay. I had a couple of brain cells that started functioning, Barry. DR. LAURITZEN: Identify. Audio Associates (301) 577-5882 (Laughter.) DR. LAURITZEN: MR. SCOTT: Say who you are for the tape. This question, it wasn‟t in We were thinking regard to duration or to allow someone. about someone being disabled and with the new treatments how long might we want to wait until we look to see how the person is doing, because you are required by the statutes to review people‟s claims every so often. period, a five-year period -DR. EIGEN: So typically even if you have a So if they‟re a year permanent disability we‟re required by law to look at your case from time to time; and so what we do is we put people into categories according to whether we think they‟re going to improve or if there is a possible they‟ll approve, or even if there is no possible they‟ll improve, and we have different lengths of time. So that‟s what Paul‟s referring to, what Paul Scott is referring to. (Laughter.) DR. LAURITZEN: -DR. EIGEN: his statement. With two Ts -- is referring to in Should we put a Paul Scott at the Center for So that‟s what he‟s saying. person in a shorter term look at them again, a longer term, medium term, that sort of thing. DR. LAURITZEN: Which actually as it turns Audio Associates (301) 577-5882 out was question number seven. MR. EIGEN: Oh. Okay. Yes. So -Okay. Gail DR. LAURITZEN: MS. WEATHERFORD: Just go ahead? Weatherford with the Immune Deficiency Foundation. The IVIG for my daughter did not make immediate changes, but a year after beginning it she began to show signs of improvement because her body was so deteriorated before she began, and we continued to see signs of improvement for three years. After the third year she began to plateau, and we could say that she‟s probably stable now. But if she has to change products, which she will this summer because of Bayer‟s moving over to a new line, then she will possibly lose a lot of ground and then we‟ll have to start building again. I don‟t know how long it will be before she‟s healthy ago in a plateau. So if that gives you a little bit of a time frame. MR. EIGEN: question more meaningful. MS. race. MS. VOGEL: The other issue, and this is a : It does. --- starting a relay Yes. Actually it makes the difficult one and going into the workplace, is the person who goes on disability, who is sick in the workplace, who is on IVIG, and who gets better being out of the workplace and not being exposed to as many infections. Audio Associates (301) 577-5882 Now what happens with that person being out of that place and their levels are better, they‟re doing better, how do you determine? that person permanently disabled? Is Can they go back to work? And if you put them back in the workplace are they going to deteriorate again? That‟s a difficult one, and I don‟t know what the answer to that is and I don‟t know if there‟s a temporary situation where that person may want to try another work environment. I don‟t know, but most of those people who do not succeed in the work environment and who do better in the home where they‟re in germ-free environment -a more germ-free environment, are not going to succeed going back in the workplace, but are going to look better being outside of it. MR. EIGEN: mental disorders listings. There‟s an analogy to this in our There are people who have a variety of mental disorders, but I‟ll use psychosis as an example. We have special criteria for some people who have They‟re psychosis who are now living kind of marginally. living on their own, they‟re not -- if you look at them now you would say, "Well, you‟re not so bad," but it‟s because they‟re in a situation that‟s basically protected. from a mental standpoint, but it‟s the same idea. a hard question. I was also thinking, I have never done this, but I had a similar situation happen to me. Audio Associates (301) 577-5882 I had a child It‟s Yes, it‟s who died of cancer; and he had a bone marrow transplant, and so he got better and the DDS tried to cease him. By the way, in the face of a rule that said that he should have even been called up for a continuing disability review, that he was supposed to stay on because we had a rule that said if you have a -- we knew that if you had a bone marrow transplant if we looked at you shortly afterwards you‟d probably look okay, but that wouldn‟t necessarily tell you anything. So I can feel for you. I personally know I‟m what that means, and that‟s what I‟m worried about. also worried about this failure of treatment issue I‟ve heard a lot of today. So what do we do about that? If we say check the person in a year-and-a-half but we know that there‟s a good chance that the treatment will fail in 24 months, why would we look at the person? answers to these questions. complicated. I don‟t know the I just think this is very Very complicated. MS. CHRISTENSEN: I‟m Janet Christensen from I have two boys with the Immune Deficiency Foundation. primary immune deficiencies, and going back now to what was said about what was going to work, my boys are going to be forced to find large employers to have insurance coverage from their medications which right now is running about $8,000 a month for well care. So if they‟re going to get Audio Associates (301) 577-5882 sick in a large environment then they‟re really caught. know, what are they going to do? MS. WEATHERFORD: It‟s tough. We‟ve talked a lot today You about primary immune deficiencies and IVIG, and I want you to understand that IVIG only replaces IGG. Most of our primary immune deficiencies include multiple gamma globulin components -- IGA, IGM, IGD, IGE -- and IGG is only one small part of that. So I don‟t want you to misunderstand that once we get them on IVIG then they‟re taken care of, because it‟s not the case. issues with that. Many of our clients have other In My daughter is pan-gammaglobulinemia. other words, she has none of the IGGs -- IGA, IGM, IGD, or IGE. So getting IGG is a help, but it‟s not a cure. DR. LAURITZEN: the point home well. Leave it to the moms to drive It‟s 4:15, and it seems So I want to actually So thank you. like maybe this is a breaking time. thank everyone. I thought it was going to be much harder to You are much better than the people get a conversation. yesterday. (Laughter.) DR. LAURITZEN: over to Sue Roecker. Closing Remarks by Sue Roecker MS. ROECKER: Thanks. I just want to wrap up So I am going turn it back Audio Associates (301) 577-5882 real quickly and not hold you much longer. your evaluation sheet before you leave. up. I want to thank everybody. Yes. Please do I just want to wrap This has just been an I have taken extraordinary day, and extraordinary two days. extensive notes, and as I was doing that I thought, "Well, why am I doing this? We‟re going to have a transcript." One thing that struck But it‟s been very helpful to listen. me especially today even more so than yesterday is I always think that we bureaucrats have the corner on acronyms. guys have us beat. (Laughter.) MS. ROECKER: you good, I‟ll tell you. And mom back there, boy, are You Anyway, we kind of three categories here as I was trying to put this together, and I don‟t want to recap everything. transcript of what went on. We‟ll have a nice Many of us took notes, and certainly there are a lot of themes that we have talked about and have come up again and again. But we‟ve gotten tremendous, very specific input I think on the listings themselves, and certainly we had that yesterday, but today I think we‟ve just gotten very, very specific suggestions. I can‟t promise we‟re going to everything you‟ve asked us to do or you‟ve suggested, but certainly very, very good suggestions, very specific, something that we can -concrete that we deal with and we can take back and, you Audio Associates (301) 577-5882 know, say "Yes, how does this fit together, or do we need to modify it?" But we have something very, very concrete to work with, and for that we really do thank you. We‟ve gotten specific ideas about trying to use of the concepts or the approach in 14.08N. We talked about that a lot yesterday, so part of what -- today we were talking about how wonderful 14.08N is. Yesterday we talked So about how deficient that paragraph was in terms of HIV. I think we need to look at that, but I think certainly some of the concepts are those kinds of things that we want to look to see whether it‟s appropriate for the other immune disorders. We talked about just a tremendous amount of discussion today about including the Social Security rulings language somewhere in the listings, and certainly using "or" instead of "and" in certain places. look at weight loss and weight gain. Certainly we want to I mean, that‟s a very specific thing that I think that again is probably too limiting and we need to see how we approach that. The whole issue of the drug regimens, the side effects of drugs, the failure of drugs, the longitudinal aspects of being on these drug cocktails, and the variable of the success and the changing success, you know, over time. The difficulties in trying to be in a work environment when you have one of these disorders is Audio Associates (301) 577-5882 certainly probably unique in some ways to this body system because of being out and the workplace can actually be very detrimental. The other kinds of symptoms that we need to either stress or make sure that we consistently in some way weave through the listings. Not just fatigue, but the cognitive dysfunctioning; the sleep disruption and all of the things that that can also cause, depression, pain, et cetera; the cumulative additive effects of multiple disorders, multiple impairments; the cycle of flare and remission and how that varies from individual to individual; the fact that stress can be trigger and some of those other things, especially for folks with these kinds of disorders. Using other sources, third-party information. How do we use it? How can we get it? All the difficulties and complexities of that, you know, as much as we‟d like to get, you‟d like us to get. How do we get that? How do we identify who those people are? of especially the listings? How do we use them in terms Where do we draw the line in terms of how much functional information do we build into the listings, because that‟s the kind of stuff we get from third parties quite often. So all of those things. Again, very, very good comments that are specific, things that we really can go back and use and talk about. comments about process. We also had a lot of Not as much as yesterday, but we Audio Associates (301) 577-5882 had a lot of comments about process today, too. we know our process can be confusing. arduous. You know, We know it can be We know it can be difficult to maneuver, and I think Barry says it so eloquently; we really do want to do this right and we don‟t -- in all 3-million claims a year we don‟t do it right. You know, but we are trying, and we know Sometimes why do you need to that sometimes it takes long. go to hearing when perhaps it should be decided at the initial level. We‟ve heard that before. That doesn‟t mean that we are satisfied or that we think that it‟s okay. There are things, you know, going on to try to address some of those issues. There are bigger issues and there -- but there are things that we think we can do to perhaps address that. We talked about training a lot. suggested a lot of different training. You have We do do training. We try to train the adjudicators and physicians that are involved in the program, but I think that there are certainly things that we can do, and we‟ll take those suggestions back. The need for medical specialists in the process, in various ways that‟s come out loud and clear. Again, that‟s something that Martin Gerry and others are particularly interested in trying to work on, so I hope that over the next year or two that we can develop some Audio Associates (301) 577-5882 improvements in that area. There are a bunch of things in the process area. Then you didn‟t stop at that. You wanted to change the program, and you had some ideas of changing the program in terms of partial disability so that folks could do parttime or could do variable work efforts. While I think many of us think that that‟s something that should probably be seriously considered, that‟s a statutory issue; and while we won‟t rule it out, that‟s not something we can do by changing the listing. So that‟s a much bigger issue, but that did come through loud and clear, especially yesterday and today. The work incentives and how does really help You know, the people, the health insurance issue. reluctance and the fear about going back to work because of loses of health coverage, and just the complexity of the work incentives and some of the gaps and the failures in work incentives. Finally, I would say thank you for your offers of help. I‟m sure we will follow up on that, those of you who have resources that we can use in terms of specialists and other specialized knowledge and experience. We certain appreciate the offer, and I think that we will be touch to try to get some specific information, or as we try out some things among ourselves and say, "We‟ll, how does this fit together?" We‟ll be calling on you to bounce this Audio Associates (301) 577-5882 off and to say, "Does this get to what you were trying to tell us about?" So I think that‟s in very, very quick, general terms the kinds of things we heard from you. We have a transcript, but I just want you to know we did hear you. I think we listened. I think we learned an awful lot. Those of you We really do appreciate you taking your time. who have traveled great distances we really appreciate it, and we thank you. very much. (Whereupon, the meeting was adjourned at 4:30 p.m.) So have a good trip home and thank you Audio Associates (301) 577-5882 Audio Associates (301) 577-5882