National Black Caucus of State Legislators – P100771 Reducing Colorectal Cancer: Screening, Access, and Services in Minority and Underserved Communities October 26, 2005 Operator: Good afternoon ladies and gentlemen. Welcome to the Healthy States web conference focused on Reducing Colorectal Cancer, Screening, Access, and Services in Minority and Underserved Communities, brought to you by the Council of State Governments and National Black Caucus of State Legislators. Please go ahead. Lynne Flynn: Good day everyone. This is the Healthy States web conference titled Reducing Colorectal Cancer, Screening, Access, and Services in Minority and Underserved Communities. I’m Lynne Flynn, Director for Healthy Policy of the Council of State Governments. As you moderator today I want to welcome you and thank you for joining us on this call. Healthy States is a partnership between CSG, the National Black Caucus of State Legislators and the National Hispanic Caucus of State Legislators. The initiative offers trends analysis, innovative solutions, and expert advice on critical public health issues for states. More information about the Healthy States initiative is available at www.healthystates.csg.org. You can link directly to this site by clicking on Healthy States on the lower left hand corner of your screen. Please tell your friends, colleagues, and state legislators and staff about Healthy States. We’ll be working hard in the coming months to provide you with all kinds of interesting and informative resources on public health and it will all be available through the Healthy States website. NBCSL and CSG would also like to thank the Centers for Disease Control and Prevention for their generous support for the Healthy States initiative. These web conferences are made possible and are made free to state legislators, officials, and staff through a cooperative agreement with the Centers for Disease Control and Prevention. Today’s conference is the ninth of a new series of web conferences on public health issues for state legislators under the Healthy States initiative and is being brought to you by NBCSL, the National Black Caucus of State Legislators. Now for a few logistical points for our listeners who are new to this series of web conferences. Please note that this conference call is being recorded and that there may be members of the press on the line. If you’re listening to us over the phone but you’re not logged into the web portion of the event please refer to the registration instructions, which you received. This will help you to access the slides that our panelists are going to be using today. If you have any difficulty with either the audio or the web portions of our events, our web conference operator will be happy to help you. Just press star and the number zero on your telephone keypad for the operator. Currently all the participant lines are in listen-only mode, later though we’d like to hear from you. During the last half of our conference we’ll have a question and answer session with our panelists. You can submit questions in two ways. One, you can ask a question directly of our panelists by pressing the star key followed by the number one on your telephone keypad and let the operator know that you have a question. The operator will un- mute your line and you can ask your question directly to the panelists. The second option is that you can send us your questions through the question box at the bottom right portion of the webpage, but we’d rather hear your voice, so have your questions ready. I’d like to take minute to orient you to the other sections of the web conference page that you’re looking at. In the upper left hand corner you’ll see the name and photo of the person who’s speaking. The middle left has the complete list of speakers and if you click on the speaker’s name you’ll link to that speaker’s bio. The bottom left has links to resources from the speakers, the Healthy States website, and the NBCSL website. Finally, this is our ninth Healthy States web conference and we need your help. At the end of the web conference an evaluation form will appear on your computer screen and will give you more instructions on how to complete that evaluation later in the conference. With these logistical notes taken care of, I’d like to give you an overview about colorectal cancer, which is the focus of today’s web conference. Colorectal cancer is the second leading cause of cancer related deaths in the United States. Over 56,000 Americans will die of colorectal cancer this year and approximately 145,000 people will be diagnosed with the disease. In this web conference health experts and a state legislator will describe strategies to encourage more Americans to complete the testing for colorectal cancer, including some unique approaches that are being implemented for minority and underserved communities. Today’s guests will discuss the importance of preventing colorectal cancer, share what programs and approaches are working in minority and underserved populations, and what legislators are doing and can do further to help address the severity of colorectal cancer, particularly in African American communities. So we’re very pleased to have with us today our speakers, Dr. Laura Seeff, with the Centers for Disease Control and Prevention, Division of Cancer Prevention and Control. Dr. Seeff could you please say hello to the audience and tell us just briefly how long you’ve been involved with cancer prevention at CDC? Dr. Laura Seeff: Sure, hi this is Dr. Seeff and I have been at CDC since 1998 and I’ve worked exclusively in cancer prevention since then and primarily with colorectal cancer prevention. Lynne Flynn: OK, thanks Dr. Seeff. Our next speaker is Dr. William Blackstock, Associate Professor of the Department of Radiation Oncology at Wake Forest University School of Medicine. Dr. Blackstock could you please say hi to our listeners and tell us about your involvement in cancer work, particularly with colon and rectal cancer? Dr. William Blackstock: Hi Lynne, it’s William Blackstock and yes, we’ve been involved, actually I’ve been involved with Geon malignancies in reference to disparities for probably ten years and most of that work has been through the Cooperative Groups. Lynne Flynn: Thank you very much. We’re also pleased to have with us Illinois State Senator Donne Trotter. Senator Trotter could please say hello to the audience and tell us a little bit about your involvement in health issues? Senator Donne Trotter: Certainly. Good afternoon everyone. I’m Don Trotter from Illinois, I’ve been in the Legislature for the past 18 years, but here in Illinois we can have other jobs in other professions as well. My other career is for seven years I was the Director of Minority Health for the Cook County Department of Public Health and in that capacity; of course, looking at health disparities was my job. So here on the legislative side with that job I’m able to also create legislation and other programs, which I use as one of my tools and for the rest of the people in the state. Lynne Flynn: Thank you very much Senator Trotter. Finally, please join me in welcoming Dr. Stephen Grubbs, a Medical Oncologist and Hematology Consultant with the Delaware State Health Department. Dr. Grubbs would you also say hi to the audience and tell us a little bit about your involvement in cancer work in Delaware? Dr. Stephen Grubbs: Yes, thank you and I’m a practicing Oncologist in Delaware for the last 21 years and for the last 4 1/2 years I’ve now been involved with our Governor and Legislature in developing a comprehensive cancer control program for the state that’s administered through our Delaware Division of Public Health. Lynne Flynn: Thank you very much and thank you to the whole panel. To launch our web conference I’d like to begin with our CDC Representative, Dr. Laura Seeff. Dr. Seeff is a Medical Officer in the Division of Cancer Prevention and Control at the Centers for Disease Control and Prevention. She’s helping to lead a new CDC initiative to explore the feasibility of increasing colorectal cancer screening at community levels and she’s the Principal Investigator for a CDC study to estimate the national capacity to provide colorectal cancer screening to all eligible folks in the US. Dr. Seeff, you’re doing a great deal of work in the area of colorectal cancer and many people are unaware of the severity of the disease. What can CDC tell us about the burden of colorectal cancer affecting the general public? Dr. Laura Seeff: Can we go to my first slide? Thanks. So you, Lynne, you already talked about some of the statistics, but colorectal cancer is very common and lots of people are not aware about it, it’s the second leading cause of cancer deaths in the United States. It occurs primarily in adults 50 and over and it occurs both in men and women and among persons of all races. And these are the American Cancer Society estimates for the year 2005 that you have mentioned, Lynne. It’s anticipated that there will be over 145,000 new cases of colorectal cancer and over 56,000 deaths from colorectal cancer in 2005. And it’s also a very expensive disease to treat. These estimates are actually a little bit old and they don’t include the costs for the new treatments, but about a year and a half ago it was estimated that it costs $6.5 billion a year to treat colorectal cancer, which is second only to the cost to treat breast cancer, so it’s an expensive disease to treat. Lynne Flynn: Thank you Dr. Seeff. And how about colorectal cancer screening? Is it cost effective? Dr. Laura Seeff: Yeah, and again if you could go to my next slide, it is, there’s several tests that are used for colorectal cancer screening and these estimates that are listed on this slide show for any of the colorectal cancer screening tests out there it is very cost effective. And this slide compares the cost per year of lives saved for colorectal cancer screening versus other health modalities, so compared to other cancer screening, for instance breast cancer screening, it’s actually more cost effective. So it’s felt to be extremely cost effective to screen for colorectal cancer. Lynne Flynn: Thank you. Is morbidity more prevalent in a particular race, gender, or age group? And would regular screening cut the rates of colon cancer morbidity? Dr. Laura Seeff: Yeah. Colorectal cancer occurs again primarily in people 50 and up. This slide shows death rates for colorectal cancer from 1998 to 2002 and it shows, I’m not sure how well these colors project, but it shows death rates for black men as the top line, and then white men, and then black women, and then white women and you can see that deaths are higher, the highest among black men and deaths are higher for African American men and women than for white men and women. Lynne Flynn: What evidence do we have that screening for colorectal cancer works? And what are the barriers that are keeping the screening rates low? Dr. Laura Seeff: Screening, can we go onto the next slide please? Screening in general, screening tests are performed before a person has symptoms. This is the idea behind screening for any disease, that they’re performed to detect a disease which may be present but silent to be able to prevent or more effectively treat the disease. For colorectal cancer in particular, it’s somewhat unique. Cervical cancer is similar, but other cancers don’t allow this ability to be able to both prevent and detect early and that’s because most colorectal cancers begin with polyps, a growth inside your colon that transforms very slowly over about 10 to 15 years into a colorectal cancer. And if that polyp is detected and removed, the cancer’s actually prevented. And also if the cancer’s detected early, mortalities decrease because treatment’s much more effective. Despite how effective screening is, however, only about half of the adults in this country are currently being screened appropriately for colorectal cancer and we know that screening rates vary and screening rates are lower among persons with less education in a lower socioeconomic status, those without health insurance, and those who’s physicians don’t recommend colorectal cancer screening. So it’s very powerful for a person’s physician to recommend screening. Lynne Flynn: Can you talk to us a little bit about states mandating colorectal cancer screening? Dr. Laura Seeff: Yeah, and again, this data are two years old, but this slide shows states that around the country are currently mandating screening and then those are the states that are shaded in green. And then the states that are shaded in grey are those states that are considering mandating screening. And not every state feels that mandating screening is the way to go, but for those that feel that mandating screening will help increase screening rates, these are the states that are currently mandating screening. Lynne Flynn: OK, thank you. Has CDC implemented any programs that focus on colorectal cancer in underserved populations? Dr. Laura Seeff: Yeah, we are just beginning a very exciting new initiative; we have committed $2.1 million for this coming year to fund five demonstration colorectal cancer screening programs focusing on low income and under or uninsured persons. And we just made the awards in August and we’ve just begun working with these sites and these are the sites, and I’m just going to go through them briefly. The first is the Research Foundation of SUNY/Stony Brook on Long Island, the second is the entire state of Nebraska and we’re funding the State Health Department, the third site is the Missouri Department of Health and Senior Service, but that program will be focused entirely on Saint Louis and focusing on an African American population. The fourth site is the Maryland Department of Health and Mental Hygiene; again they are just focused on Baltimore and again focusing on African American population. And the final site is a series of community sites in three counties in Washington and that program will focus on American Indians. Lynne Flynn: Thank you Dr. Seeff. What resources would you recommend for State Legislators who want to learn more about programs to reduce colorectal cancer in their state? Dr. Laura Seeff: I’ve listed on this next slide, if we could go to the next slide please, a series of resources. The first is the CDC website that focuses on what we’re doing in all cancers, and then specifically in colorectal cancer. I’ve also included a link directly to resource materials on colorectal cancer. We have a multi-year federal awareness campaign on colorectal cancer entitled, Screen for Life National Colorectal Cancer Action Campaign and this link goes directly to the campaign materials. And these materials can actually be, they’re all available for free and they can be tagged locally, so it includes print materials and radio and TV public service announcements. And so a state or local community can tag the announcements so that it says brought to you by CDC and a particular community. There’s also a link here to a large study that we’re doing, looking at patterns of care among different cancers. And then we’re also becoming quite active in cancer survivorship, which is pertinent to colorectal cancer as well as other cancers, and I’ve got a link to what we’re doing in cancer survivorship. Lynne Flynn: Thank you very much Dr. Seeff. It’s certainly going to be useful information for us. I’d like to now move to Dr. William Blackstock. Dr. Blackstock is an Associate Professor at Wake Forest University School of Medicine and serves as Co-Chair of the Underserved Committee within the Cancer and Leukemia Group B. Dr. Blackstock, based on your research what are the characteristics of populations that are not likely to receive colorectal cancer screening? Dr. William Blackstock: Well I think as our prior speaker just mentioned, Laura mentioned that it is the underserved, communities of underserved (inaudible) people of low income usually, low socioeconomics and unfortunately African Americans make up too much of those populations. As you can see in my first slide we talk about the patient’s likely to undergo screening for colorectal cancer and perhaps the first and most important point in my brief presentation is that colorectal cancer is a very curable cancer, particularly as it relates to early detection, which makes screening all the more imperative. Screening, whether it’s the test to look for blood in the stool or endoscopy to look at the colon or rectum directly, it’s important for detecting cancers in the early stages. Again whether you, whatever strategy you want to use and in many instances screening allows for the detection or removal of abnormal polyps, as Laura mentioned, part of them becoming cancerous. Unfortunately as the top row demonstrates, in general African American patients or folks are less likely to undergo screening. Certainly they don’t undergo screen at the same rate as non-African Americans and as you can see from the second row, screening is a function of your annual income, decreasing as your annual income decreases. Lynne Flynn: Thank you for that information. What are the risks related to colorectal cancer, cancer mortality? Dr. William Blackstock: Well as you can imagine there, it’s multi-factorial, but certainly to be one of the reasons is access to care, or barriers to care, barriers to screening. In my second slide I do talk about the survival for patients of African American decent versus non-African American and we are, the African American’s are more likely to die from our diagnosis and interestingly enough, this is independent of stage. And what that means is that even if you’re diagnosed as an African American at an earlier stage you’re still more likely to succumb to your disease. Lynne Flynn: What do you see as some of the barriers to diagnosis and treatment of this cancer among communities of color? Dr. William Blackstock: As it relates to the prior slide, one of the barriers is treatment, or I’m sorry as it relates to this slide. And one of the potential factors for increased death rate observed for African Americans is reflected in the top row. As you can see patients of African American decent are less likely to receive chemotherapy, and this has actually be shown for those patients who need adjuvant radiotherapy. African Americans are less likely to receive those therapies and as discussed prior and displayed in the second row there’s a clear relationship between the socioeconomic status and access to treatment. Again you can see as income drops the use of chemotherapy drops. Lynne Flynn: Thank you. That’s frightening information. What solutions would you suggest in order to increase colorectal screening among minorities and underserved populations? Dr. William Blackstock: Well you know, Lynne if I could tell you, I do want to make one more, I guess additional point, and that is it wasn’t that long ago that there was an assumption that African American patients, when diagnosed with cancer did poorly for a number of reasons that related to inherently more biologically aggressive tumors, that perhaps African American patients would simply present with more advanced disease and I think similar work that a number of folks around the country have been doing would suggest that’s not true. That if you look at clinical trials for patients that are entered with the same stage of disease and receive the same identical therapy that the outcomes are absolutely identical. That if African American patients receive the adequate therapy then the outcomes should be comparable to those of non-African American decent. Perhaps maybe to move back on target to the question though, we do have some solutions and I just put a few forward and would mention a few more. Half the US uninsured belong to racial and ethnic minorities in this country and Medicaid access to otherwise unobtainable healthcare coverage could be augmented, if the states could expand eligibility or work to eliminate administrative barriers to these types of coverage. A number of states have created or improved their state minority health offices and infrastructure and perhaps, you know, as this hopefully expands to other states, these offices are critical to, as we try to serve or advise state policy makers about the issues of healthcare disparities. And I’d like to just close with something that came from a document from the Commonwealth Fund and that is, any effective strategy to eliminate cancer disparities will require number one, the full engagement of the state government, both executive and legislatures, number two, support from the broader healthcare sectors are required, that means hospitals, physicians, community health centers, et cetera. And finally, with any effective strategy we must have buy-in or engage the broader public through community based public education. And I think I’ll close there. Lynne Flynn: Thank you very much for those suggestions, Dr. Blackstock. Let’s go now to Illinois State Senator Donne Trotter. Senator Trotter was elected to the Illinois General Assembly in 1988 and from 1996 to 2000 I’m very please to let you know that he served as the Chairman of the Health Committee for the Council’s State Government. He, as he mentioned earlier, he also worked in the Cook County Healthcare System for over 20 years and is currently the Appropriations Chair in the Illinois Senate. Senator Trotter, what were the circumstances in the State of Illinois that lead you and your colleagues to address colorectal cancer? And were there any particular concerns that needed to be addressed in the minority communities? Senator Donne Trotter: Well we took very serious the report from Advanced Surgeon General David Satcher, who put out this bold initiative that he wanted to eliminate health disparities in minorities by 2010. Being in a position as the Director of Minority Health and being in this position as a State Senator, certainly I made it a focus of something that we need to be addressing here in the State of Illinois our directive of the Illinois Department of Public Health also just happens to be an African American male, so collectively we took it very serious. Let’s start looking at men’s health and women’s health and essentially minority health outcomes here in our state. So in 2002, just to say we were almost a microcosm of what happens around the country in our numbers as far as colon cancers, colorectal cancer, 2002 there was diagnosed over 7,100 people with colorectal cancer. We found out that the highest rates were 68 percent of those 68.5 were African Americans and we also concluded that after looking at the numbers for 2002 that between 700 Illinoisans died. It’s projected that this year there will be 3,000 more. In my personal interest from point of disclosure, my mother is a 25 year colorectal cancer survivor, so I’ve had my colonoscopies, believe me they are the most unpleasant things in the world, but knowing that it’s just the quality of life that you live when you start talking about how is your life. You want it to be healthy doing that; we made this a priority here in this state. Lynne Flynn: Thank you Senator Trotter. What has Illinois managed to accomplish in addressing the issue? Senator Donne Trotter: Well a couple things and as one of the doctors mentioned early, again about the screening, the catching it early and the cost of, of course, the healthcare. So what we did, two years, it was what 2003, is that we did mandate that coverage and colonoscopy tests have to be covered under insurance plans here in Illinois, the same as we did with cervical cancer and breast cancer. And additionally to that, as most things we also know that we had to put forth a very aggressive awareness program. Like most states we can’t raise taxes, so there’s only a finite amount of money that’s available, but we created a tax check off where all of those dollars, for your income taxes that you check off that you want to, however many dollars you want to put in there, that that would go solely to an awareness program from, throughout the Department of Illinois, the Illinois Department of Public Health, so each of those dollars, again, augmented what the Department already had for its outreach programs. So, and that increases some other groups as well to make sure that there’s public awareness dollars put in those targeted areas where they were necessary. Lynne Flynn: Well thank you very much Senator Trotter. What kinds of suggestions do you have for other State Legislators? For example, how could the Legislation from Illinois be modeled in other states? And what should other State Legislators do who want to support, to reduce colorectal cancer, especially in minority communities? Senator Donne Trotter: One, as being Chairman of Appropriations, everything sort of evolves around, where’s the money, which has been very effective with us, again is that tax check off. That we do, at least in Illinois, I mean I know that there are many other states too that have tax check off, that this, if you can get these dollars to be dedicated for this specific disease, then you’ve gotten a leg up. A lot of people not going to get the screenings is out of, can’t call it ignorance, but not knowing. So when you get the message out there, know that this is, as the doctor pointed out, a treatable and in some cases curable disease. Then you’re taking a big step to deal with that, the morbidity issues in your state. Lynne Flynn: Thank you very much Senator Trotter. We appreciate those very practical suggestions. I’d like to now move to Dr. Stephen Grubbs. Dr. Grubbs is a practicing Medical Oncologist in Newark, Delaware. He serves as a Council Member and Colorectal Cancer Screening Chair of the Delaware Cancer Consortium, excuse me. Dr. Grubbs, you’re doing extensive work on colorectal cancer in the State of Delaware. Does the poverty level in your state play a role in access, screening, and morbidity for colorectal cancer? Dr. Stephen Grubbs: Yes, thank you Lynne, if you can get my first slide up on the screen we can talk about that. As you heard from Dr. Seeff and also from Dr. Blackstock, Delaware, like the national data shows, that income, education and I don’t have on my slide actually health insurance all are factors in screening. And what I did is I have a slide here for actually Delaware for folks that are over age 50 that should be getting a, perhaps a colonoscopy or sigmoidoscopy for their screening and what you’ll see on the bars on the left is that income is directly related to whether you’ve had this test done, on the right excuse me, and also education, the more education you had, the more likely you are to get the screening. But I do want to point out here, we’re talking about difference between these groups, but I’ll tell you, nobody’s doing a great job out there. Whether you’re educated or making a lot of money, the answer is we still have very bad screening rates for everybody. And on this slide is not the data that the CDC has, it shows if you have no health insurance your rates of screening are below 30 percent, so that’s also a huge factor, which I think we’ve tried, are trying to address within our Delaware program. Lynne Flynn: Thank you Dr. Grubbs. Could you give us a little information about the task force that was developed to address cancer issues in your state? And who’s involved in that task force? Dr. Stephen Grubbs: Yeah, this has been a, we’re in our fifth year of this project and our Governor and Legislature mandated that we put together a group of individuals back in 2001 that acted as a cancer advisory panel. And out of the recommendations, and we’ve had those before in Delaware and not a lot was accomplished, so this panel actually put together a report that didn’t try to solve every cancer problem in the world, but tried to have problems that we could identify that were fixable and with a reasonable amount of money. And after that report was made in 2002, the advisory council turned into the Delaware Cancer Consortium, and you see on my slide, is headed by the Governor, Ruth Ann Minner, the Lieutenant Governor, and John Carney, is one of the members of this consortium. There are bipartisan legislators that are actually part of this consortium, and then the stakeholders in the state that are involved with cancer issues that are listed there, including survivors, advocates, healthcare professionals, organizations such as the American Cancer Society, and our healthcare delivery systems, including the hospitals are all members of this. And of course this entire program is administered through the Delaware Division of Public Health. So it’s a wide range of individuals all working together now for nearly five years on our cancer control project. Lynne Flynn: Thank you. What were the circumstances that provided Legislative and Executive branch support for funding Delaware’s prevention and screening and treatment programs? Dr. Stephens Grubbs: Well this is, it’s a unique opportunity in Delaware where, you know, we really had everybody come together, including our Governor, Lieutenant Governor, our Legislators, the healthcare professionals, and the community in general including our hospitals and organizations and public and the number one driving force in Delaware was until recently we had either the first or second highest cancer mortality rate in the United States, more deaths per 100,000 people than any state in the union. I’m happy to report I think we dropped to fifth or sixth now from first or second, so something good’s happening in Delaware. The other issues, and again this caught everybody’s attention and the press has been harping on this for a long period of time, so fortunately our Legislators and everybody else, you know, followed along and said we have to do something about this. The other thing that was clear, as you can see on my slide there, is we all had become quite aware of the disparity issues in healthcare and in this particular topic, in colorectal you can see the data for Delaware says if you’re an African American male you’re more likely to die by 23 percent compared to a Caucasian male, and a female African American resident of Delaware has a 71 percent increased mortality rate compared to a Caucasian female. So again those issues were discussed by Dr. Blackstock, but certainly we have our own state data here that shows there’s a disparity here that needs to be worked on. Lynne Flynn: Thank you. Could you tell us a little about the Colorectal Cancer Prevention Programs in the State of Delaware? Dr. Stephen Grubbs: Sure. This is one part of a more comprehensive cancer control program and it’s actually the part that I’ve been in charge of since the beginning. What we’ve done here is tried to answer some of the barriers to getting screening performance and first of all what we’ve done statewide now is we have nurse coordinators at each one of our six hospital sites whose job is basically to get people into screening and make sure they get through it properly. In addition we have community advocates and these are all hired through state funding to get out into the community and get to the areas where we’re not getting the message out and try to encourage people to get in for their screening. The other thing that we’ve done here, which is an incredible barrier we tried to break down, we have the funding to pay for the screening of colon cancer, including colonoscopy for anybody over age 50 that does not have the means or the insurance to cover it. So if you’re uninsured and don’t have the means and you’re over age 50, up to probably about $100,000 of family income we will pay for your colonoscopy. We have a marketing campaign to get the message out through the airways, through all kinds of different means, and the other thing that we’re working here is we’re developing strategies with help of the CDC to actually target our populations where we’re having very poor screening rates. So we’re about a year into doing this now and I can’t give you the success rates on it yet, except I know the number of colonoscopies we’re paying for is going up, but that’s the program. Now I have to tell you about a second part of our cancer control program because it doesn’t do us much good to pay for uninsured colonoscopies and then have cancer, not be able to treat it, so Delaware has taken the step that anybody in the state who’s diagnosed for cancer, any type of cancer, will be, have one year of their cancer care paid for through state funding. And this includes folks up to a four person family income of about $120,000, so we have the whole thing put together. Screen for colon cancer and if you have a cancer that needs to be treated we have the coverage to make sure you get your treatment properly. Lynne Flynn: Well thank you, those are very, very impressive programs. Are there any programs you’d like to mention that specifically address minority communities? Dr. Stephen Grubbs: Well as you’ve seen, the disparity issue is certainly an issue in Delaware like it is in the United States, and if I could have the next slide here, we have targeted specifically to the African American community a program called Champions of Change. Now this has been modeled on a relatively successful program we’ve had in Delaware where we have a group of African American men who are called the Prostate Cancer Warriors who go out into their communities and get men in to get them screened and we’ve modeled this after that program, but this is a comprehensive program to get into our minority communities and make sure that we’re doing the best we can with the folks in those communities to get people registered for screening. Lynne Flynn: Well thank you very much Dr. Grubbs. We appreciate that information. I’d now like to put our audience on notice that we’ll go to our phone lines and e-mailed questions in just a minute, so go ahead and get your questions ready for our panelists. Remember you can ask questions in two ways, the first way is by pressing the star key followed by the number one on your telephone keypad. That will notify our operator that you want to ask a question. When it’s your turn the operator will announce you to the group and you can ask your question directly to the panel. The second way to ask questions is just to use the question box on the bottom right portion of the webpage. Just type in your question and send it and I’ll read the questions to the panelists. Operator did you have additional instructions for us? Operator: No ma’am. You’ve covered them completely, thank you. Lynne Flynn: OK. While we’re waiting for questions from the participants, I would like to ask a question of Dr. Grubbs. Dr. Grubbs, what was the funding resource for Delaware’s Cancer Prevention Program? Dr. Stephen Grubbs: Well as Senator Trotter mentioned earlier, it’s great to have ideas, but you have to have the resources to accomplish things. And again we’re fortunate in Delaware that our legislators and our Governor and Lieutenant Governor have had the wisdom not to spend our tobacco money elsewhere, so for the moment our total budget is running about $10 million a year for our entire Cancer Control Program, including the insurance that I mentioned earlier and that is all coming from tobacco funds right now. Lynne Flynn: OK, thank you very much. We do have a couple of questions already, who have come in by e-mail, so I’ll go ahead and get started with those. The first question is for Dr. Seeff and the listener would like to know, what are the practical barriers to screening and receiving treatment for this disease, particularly to African Americans and minorities? Dr. Laura Seeff: In general the barriers to receiving screening are, and these have been mentioned by most of the speakers today, is a deficit in awareness of how important, how common this cancer is and how effective screening is. So I think the most, if you look at actually data that we’ve analyzed and published, the most common reason people aren’t getting screened are either they didn’t know they needed to, or their physician didn’t recommend it. So encouraging physicians to recommend screening and then continuing to try to raise awareness is one key element of increasing screening. And then also, as was pointed out by myself and several of the other speakers, those who don’t have healthcare insurance or specifically coverage for colorectal cancer screening are much less likely to get screened and that’s definitely more common among African American populations. So working towards expanding coverage for colorectal cancer screening is also another way to address that barrier. And then finally, as was mentioned also by Dr. Grubbs, being able to pay for screening, particularly in minority populations or those who can’t otherwise pay has been a big barrier and this is, several states besides Delaware, I believe, are using tobacco restitution funds and that’s partly why we’re very excited to be starting this demonstration program where we’re providing payment, because payment, just to cover the cost of the screening test is a tremendous practical barrier. Lynne Flynn: Well thank you Dr. Seeff. Would any of the other panelists like to comment on that? Then I can move onto the next question if not. Our next question relates to mass screening clinics and the question is, can anyone comment on successful mass screening clinics? And if so, who do we contact to learn about these efforts? Dr. Laura Seeff: Do you want me to take that question? Lynne Flynn: Sure, why don’t you go ahead and get started and we’ll see if anyone else would like to add. Dr. Laura Seeff: OK and I think Dr. Grubbs can speak to his program in Delaware… Dr. Stephen Grubbs: Sure. Dr. Laura Seeff: But there are a few states that have done screening for several years now and I would need to provide contact information after this web conference, but both the State of New York and the State of Maryland have been running statewide screening programs for the past several years, which I’m assuming is what you’re referring to by mass screening. And then actually Nebraska just completed a three-year pilot program where they offered a sequel called “Blood testing to residents of Nebraska”. Dr. Stephen Grubbs: Yeah, I can comment. In Delaware the model we’ve developed to get statewide screening, I guess that, if you want to call that mass screening, is continuing to use our private sector physicians for endoscopy, colonoscopy and that’s our actually preferred methodology, even though we know there’s other ways of screening, but we also have available the new colorectal fit called blood testing, where you check the stool for blood if, and we have actually a question, intake questionnaire to get the persons ideas on what they think about screening and that may direct us to one particular screening that’s more effective. The bottom line here is getting some kind of screening, that’s better than none at all, even though we would like everybody to get a colonoscopy. Lynne Flynn: OK, anyone else like to comment on that one? Dr. Grubb’s last comment really does lead directly into one of the additional questions we’ve received via e-mail and that relates to different types of screening. Specifically the individual asks, how can we get the message to providers that colonoscopy is not the only way to screen for colorectal cancer, and that the use of the fecal occult blood test is a population based screening tool that is proven effective? Dr. Stephen Grubbs: Well the first place you can go look is the American Cancer Society has the complete list of all appropriate screening tests from the fecal occult blood through sigmoidoscopy through a combination of the two, including barium enema and finally colonoscopy, so any of those are appropriate screening tests and I think I want to add something, you know there’s, I mentioned FIT test is a new immunochemistry test for finding blood in the stool that’s theoretically more accurate than the old stool card we’ve used for, you know, decades now and I think we’ve certainly adopted that because we think we’re going to have better screening with that. Lynne Flynn: OK, anyone else want to comment on that? Dr. Seeff, anyone? Dr. Laura Seeff: Yeah, we also have a lot of educational material that explains each of the four screening, each of the currently recommended four screening tests and our message is consistent with, there’s three sets of national guidelines that recommend screening tests and as Dr. Grubbs just said, all of them are effective and actually the strongest evidence does support the use of fecal occult blood testing. However, there is a lot of public pressure, and I would say provider pressure towards endoscopic screening tests, but we continue to say all of them are effective, they’re all cost effective. The tests themselves, of course the fecal occult blood test is much cheaper than an endoscopic test, but we do continue to promote all of them. Dr. Stephen Grubbs: And can I comment on that, because we promote them all too, but we prefer the colonoscopy and I’ll tell you why. The population we’re trying to get at is hard to get back to have repeat tests and I’ve used the term colonoscopy’s one and done. You do your colonoscopy; if it’s OK you’re good for ten years. Dr. Laura Seeff: Right. Dr. William Blackstock: I’ll tell you Lynne, the other element is, is for folks have to be very proactive, I think to be educated and to go in to see your physician and actually ask to be screened or ask what’s recommended at age 50 or age 60 in terms of preventative strategy, so again that may be an element that we want to throw out there. Dr. Laura Seeff: I agree. Lynne Flynn: OK, good, good. We have a lot of questions coming in. Our next one is for Senator Trotter and the question is, in New York our health plans cover all evidence based modalities of screening without any mandate and the listener was just wondering if by mandating coverage you saw a significant increase in the rate of screening. And comments in New York as another state, people aren’t lining up for screening even with adequate insurance. Senator Donne Trotter: Right. I cannot specifically answer the question. Certainly we know that the Illinois Department of Public Health under the leadership of Dr. Whitaker probably has those numbers. We are hoping that is the case, but so far our numbers, since 2002 who now project the year 2005, our numbers of deaths are still going up. So that doesn’t address how many people who have been seen and are now cured, or at least going to treatment. But I don’t have a specific answer to that. Lynne Flynn: OK good. Dr. Seeff, did you want to comment any further on that? Dr. Laura Seeff: I don’t actually have data to suggest, you know, if mandating coverage has helped in particular states. I don’t have that information. Lynne Flynn: OK. Thank you all. The next question relates to language access. Language access is vital for non-English speaking populations. Are there any efforts that you all would like to share with developing quality materials that target these populations? Senator Donne Trotter: In Illinois, just, we have, I guess one of the third largest immigrant populations for many reasons. One, because we have manufacturing as well as agriculture so there’s something for everyone to do here if they can get to Illinois, and as a consequence the Latino community is well represented in our General Assembly and they have, as leaders of their community, have mandated that all literature goes out in a second language. So we are pretty well covered here as far as mandating that, at least everyone gets equal information. Dr. Laura Seeff: Can I add to that? Lynne Flynn: Please. Dr. Laura Seeff: Again one of the resources I listed, this is Dr. Seeff, one of the resources that I had listed was to our Screening for Life awareness campaign and most of the materials that we have developed in English we also have in Spanish. And then we also have some educational materials made particularly for Alaskan native populations. Lynne Flynn: OK, thank you. Anybody else? Dr. Stephen Grubbs: And we’ve done the same thing in Delaware. The program I mentioned earlier, the Champions of Change is also now expanding to the Latino community in the state and one of our six nurse coordinators is a member of the Latino community, which is of another thing of interest. We don’t have a lot of data on colorectal cancer in our Latino community in Delaware, so I can’t give you numbers like I was able to do for the disparities with the African American community. Dr. William Blackstock: And Lynne, I was just going to add, this is William, the NCI has really pushed the cooperative groups and when I say cooperative groups I mean the national clinical trial folks in the country to actually provide Hispanic drafts of consent forms and protocols because we are trying to increase enrollment in clinical trials with the underserved. Lynne Flynn: OK, thank you all very much for that information. Now I have a question for Dr. Grubbs related to the Delaware program, and the question is, how many community advocates does Delaware employ and what is the ratio of advocates to population in your program? Dr. Stephen Grubbs: Well the good news in Delaware, we only have about three-quarters of a million people in the whole state, so that’s why we can get some things done that you can’t do in Illinois. Anyway, the answer on that is right now we have six coordinators and six advocates and once we have them fully busy we’re planning to expand those as needed in certain population areas and so we’ve got the state covered from rural communities through the urban northern part of the state. Lynne Flynn: OK, thank you very much. Our next question I believe is for Senator Trotter, and the question is, how can legislators work with partners to not only identify colorectal cancer incidence and mortality health disparities that exist in the US, but to implement policy and legislation that can lead to a decrease in the number of deaths among minority populations? Senator Donne Trotter: Hello Lynne? Lynne Flynn: Yes, Senator Trotter? Senator Donne Trotter: Yes, and I know you’d, I picked up that you were asking me a question. Can you just repeat part of it? I was multi-tasking when you said that. Lynne Flynn: I can certainly do that and actually Dr. Seeff might want to comment on this as well, as I got further into the question. The question was how can legislators work with partners to identify incidents of colorectal cancer mortality health disparities and also to implement policies and legislation that can lead to a decrease in deaths among minority populations? Senator Donne Trotter: OK, on our end, as far as working with our partners, for a large state, and I heard what the good doctor said about Delaware and I love Delaware and Governor Minner’s a good friend of mine, in large states it’s just important that you really open up your offices and your mind because again a healthy society also means that you’re going to have a healthy economy, so it comes back to we are building for the future. So we have some pretty aggressive people who we deal with from the Illinois Medical Society, people from the other programs that come to us and do talk to us and that’s an important thing for any legislator is to just find out what’s going on around you. Dr. Laura Seeff: And I can, go ahead, sorry were you finished? Senator Donne Trotter: Yes. Dr. Laura Seeff: OK. Just regarding the first part of that question, which is how to access data on mortality, I guess was that the question? Lynne Flynn: Uh huh. I did assign (SHOULD THIS BE SAY?) cancer incidents and mortality rates, uh huh. Dr. Laura Seeff: Yeah, I would suggest that state legislators partner with the state health department and that every state health department there should be someone that can help find those data. Every state has access to state-level, individual level mortality and then incidents data comes, has previously come from the SEER data set, which is an NCI supported data set, is now national level cancer registry data using both the NCI and CDC data. So you can get mortality data for everyone in the country, and then every state takes part in several health behavior surveys that help monitor many, many disease behaviors, including colorectal cancer screening. So at every state there’s somebody in the state health department that should be able to help a state legislator get to those data. Senator Donne Trotter: Yup. And also just one final thing, just reminded me and hope this doesn’t sound patronizing, but as a Legislator and as the Former Director of the Health Committee of NCSL, I know NCSL is always been a very important tool for people from all the states, and people I know in the same as CSG, so that information force is there and I know we use it here in Illinois. Dr. Stephen Grubbs: And can I just make a comment, one of the projects in the Delaware Cancer Control Program is looking at the quality of care and as Dr. Blackstock showed us earlier, not all folks are getting the optimal care when they do have cancer. So what we’re doing is we’re taking our tumor registry data and we’re trying to make sure it’s as accurate as possible and then including chart reviews and then asking simple cancer question, did people get the right treatment and if not, why not? Lynne Flynn: OK, thank you to our entire panel on that. I appreciated all that. Our next question relates to resources to pay for treatments in groups such as the undocumented refugee populations, migrant populations once they’ve been identified with the disease. That’s probably a tough one, anybody have anything they would like to share about that? Senator Donne Trotter: Hello? Lynne Flynn: Yes. Senator Donne Trotter: Yeah, OK. It’s, I mean it is a tough question. One, because when everybody’s trying to contain costs to open up that door and I think even in our case to document something such as that would look as if we’re just opening up the door as to whoever comes to Illinois and treat them. I think that was one of the problems with the TENNcare program that they had in Tennessee, that everybody, you had this presumptive eligibility that everyone is included. So it’s sort of hard for a state to try and control its cost to address that directly. Lynne Flynn: OK, thank you. Let’s see, I’m reading through questions to see if there are any here that I haven’t already addressed to the panel. I will ask one more legislative question and that relates to some examples of best practices in legislation with respect to addressing disparity. Does anyone care to comment on that? Senator Donne Trotter: Well I think I can do that real fast and I am going to have to run, I’m just told I need to get back on the floor. We have, and I know many, there are several other states and Ohio has a very good program, I know in their Department of Public Health they do have a minority health program, here in Illinois we call it our Reduction of Racial and Ethnic Health Disparities Program and we look at a whole range of things and that they are given the responsibility of doing that. It goes from HIV/AIDS to hepatitis C, prostate, cervical cancer, and then all those things, they are basically mandated by the General Assembly to go to those effective areas and make sure it works, and I know they partnership with other groups throughout the state. Lynne Flynn: Thank you Senator Trotter and we especially appreciate your being with us while you’re in session and we know you will have to leave us at this point. Anyone else care to comment on that question? Senator Donne Trotter: And I thank you all, bye. Lynne Flynn: Our next question relates to federal legislation. Does anyone know of any federal legislated movement to fund a program similar to the Early Breast and Cervical Cancer Screening Program that funds both screening and treatment for colorectal cancer? Dr. Laura Seeff: I can take that question. There has been legislation introduced over the past several years to establish a federally funded colorectal cancer screening program, which would be administered to, potentially administered through cooperative agreement between CDC and states the same way that the Breast and Cervical Cancer Program is administrated, but that legislation has gone nowhere to date and that’s actually why we established these demonstration screening programs that we’re just getting going on. So that if legislation comes in the next few years we will have learned more about the best way to design such a program, and even if legislation does not come, we will have been able to learn what works best at the community levels to help establish further community level programs, whether it’s using federal funds or not. So at the moment there’s no pending federal funds for a national program, but there’s been talk of it for quite some time. Lynne Flynn: OK, thank you. Anyone else have any comments about that? It appears that our questions have slowed down significantly and I think we’re getting close; oh we may have just gotten another one. We’re getting close to the end of the time, so let me check this one, we have one more question before we do sign off. OK, this question is either for Dr. Blackstock or Dr. Grubbs, what kinds of provider education programs do you have to ensure that physicians tell their patients to get screened? Dr. Stephen Grubbs: Well part of our, in Delaware, part of our colorectal screening program is I actually write a quarterly newsletter that’s sent out to all the healthcare providers in the state, including, not only physicians, but nurse practitioners and others. We have regular seminars and education opportunities, such as last weekend we had our State Medical Society meeting and the Lieutenant Governor and three of us from the Council presented disparity issues as well as, I presented the colorectal program to probably 100 physicians. So we’re trying to make an effort to keep all of our folks in the loop that are physicians and nurses and our societies, including our State Medical Society are a partner in all of this. So we’re hoping that, again we’re going to continue to promote physician education. Dr. William Blackstock: I’ll tell you Lynne, we’ve actually, this is William, we come at it maybe from the other side and that is we actually publish from our institution in the, two Hispanic newspapers in the community, we have an African American newspaper that we publish in and we routinely run information, if you will ads that describe what types of screening we expect when you turn the age 50 and et cetera off tumor sites and again our institution is very active in the community with one of the historically black colleges in terms of really getting the message out to the layperson as to be proactive in their screening. Lynne Flynn: Thank you very much. Anyone wants to add to that? OK. I think our time has pretty much left us and that was the last question that I’ve received here for the moment. So at this point, on behalf of the Council of State Governments and the National Black Caucus of State Legislators I’d like to thank everyone for participating in our web conference today. We want to extend our special thanks and appreciation to our panelists for sharing their expertise on this subject. As I mentioned earlier, when you exit this webpage a conference evaluation survey for the web conference will appear on your computer screen. We’d like to ask you to take a minute to respond to this. It’s going to help us provide you with good information in the future. Also, everyone who sends in his or her evaluation in the next 24 hours will be entered into a drawing for a free CSG shirt. So please give us your help in filling out the survey. In addition, other resources including a reporting and a transcript of the call will be available on the Healthy States website at www.healthystates.csg.org keyword web conferences. The transcript and recording will be available in about five business days and a four page issue brief that summarizes the issues that we discussed today will also be available on the website in the coming weeks and we will also mail that to all the participants. I hope that this call has been helpful to all of you. Please feel free to contact us through our teleconference website if you have any questions or need additional information. Thanks again for participating and have a good day. Operator: Thank you. This concludes today’s conference call. You may now disconnect.