Changes in HIV Listings HIV Case Mangers Portland April 14, 2009 Sarah Patterson, Attorney at Law email@example.com 14.00 Immune System Disorders Changes effective June 16, 2008 New Listing, Online http://www.ssa.gov/disability/profes sionals/bluebook/AdultListings.htm Side by Side Comparison Chart I have posted access to SSA’s side-by-side comparison chart to the old Listing on the changes in 14.08. It’s 47 pages long, very clear, on www.nosscr.org/news.html for your permanent reference. New Immune Systems Regs SSA published final immune system listings that became effective on June 16, 2008. 73 FR 14570. They made very few changes to the HIV listing itself, and the changes made weren’t very substantive. They were mostly things like removing “reference listings”: HIV listings that are met by meeting other listings. Meeting the Listing The cases that come to hearing do not have objective documentation of an opportunistic infection. There may be credibility problems due to substance use, there may be compliance issues, there may be little documentation of severe side-effects (which is why keeping a journal can be so critical). References to Other Listings Gone Thepoint is made twice in the Federal Register comments: a condition no longer has to MEET another listing to meet 14.08. Or: Meets the Listing: Ignored! Often a Listing has been met at some point in time, but the claimant has recovered – e.g. has PCP 3 three times over 15 years. Build case around fatigue, manifestations, productivity, sustainability of work effort. ALJ’s and staff attorneys are not seeing as many AIDS cases any more – they need a lot of hand-holding. The Problem: From an Advocate: “After ten years in widespread availability of HIV / AIDS medications in the US, the ALJs and Medical Experts are lulled into a false sense of 'it's cured.' If the disease is controlled by meds, then the claimant must be able to work, right?" Equals Listing “If your impairment does not otherwise meet the requirements of a listing, we will consider your medical treatment in terms of its effectiveness in improving the signs, symptoms, and laboratory abnormalities of your specific immune system disorder or its manifestations, and in terms of any side effects that limit your functioning…” Treatment: Side Effects, Response “When we evaluate your response to treatment and how your treatment may affect you, we consider such factors as disease activity before treatment, requirements for changes in therapeutic regimens … we must consider the effects of your treatment on an individual basis, including the effects of your treatment on your ability to function.” Fatigue If you need long naps daily, you are not available for competitive employment. Underreported in medical records. Need letter from doctor, one of my forms, contact me. Get doctor to say how many days a month of work would be missed because of symptoms. Over 4 = a win. Sustained and predictable availability is key. Treatment/Credibility “…when we assess the credibility of your complaints about your symptoms and their functional effects, we will not draw any inferences from the fact that you do not receive treatment or that you are not following treatment without considering all of the relevant evidence in your case record, including any explanations you provide that may explain why you are not receiving or following treatment.” Medications “Some medications may have acute or long-term side effects. …we consider the effects of corticosteroids or other treatments for autoimmune disorders on your ability to function, … medications used in the treatment of autoimmune disorders may also have effects on mental functioning…” Chronic Med Side Effects “We will also consider whether you have chronic side effects from these or other medications, including severe fatigue, fever, headaches, high blood pressure, joint swelling, muscle aches, nausea, shortness of breath, or limitations in mental function including cognition (for example, memory), concentration, and mood.” Arguments for ALJ Firstargue that a condition does not any longer have to meet another listing – e.g. Neurological or Organic Brain Damage listing for HIV Dementia. Then go for Manifestations + Functional Impairments. Importance of 14.08 (N), Manifestations 14.08(N) is the gem of this listing – a manifestation is loosely defined, it can be anything that does not fit into the rest of the Listing structure – fatigue, med side effects, etc. It was meant to be a catch-all. Definitions, Introduction Constitutional symptoms or signs, as used in these listings, means severe fatigue, fever, malaise, or involuntary weight loss. Fatigue: a frequent sense of exhaustion that results in significantly reduced physical activity or mental function. Malaise means frequent feelings of illness, bodily discomfort, or lack of well-being … significantly reduced physical activity or mental function. Manifestations Using 14.08(N) - Establish fatigue/side effects, etc. using questionnaire to physician, HIV case manager or friend/family. - HIV questionnaire in materials for symptoms - Build layers of evidence: it is more powerful if it comes from multiple sources. - Manifestations require documentation of Functional Impairment, other sections do not. Medication Complications Diabetes, heart disease, lactic acidosis – call ’em manifestations! These conditions may not satisfy durational requirements or listing language, if considered outside the HIV / AIDS listing. Peer journals recognize such conditions as CAUSED by the meds means such manifestations CAN be argued under 14.08(N). Manifestations/Frequency “As used in these listings, “repeated” means that the manifestations occur on an average of three times a year, or once every 4 months, each lasting 2 weeks or more; or the manifestations do not last for 2 weeks but occur substantially more frequently than three times in a year or once every 4 months; or they occur less frequently than an average of three times a year or once every 4 months but last substantially longer than 2 weeks.” No one seems to be counting. Functional Criterion “To satisfy the functional criterion in a listing, your immune system disorder must result in a “marked” level of limitation in one of three general areas of functioning: Activities of daily living, social functioning, or difficulties in completing tasks due to deficiencies in concentration, persistence, or pace.” “Marked” “… means more than moderate but less than extreme [and is defined by] the nature and overall degree of interference with your functioning. You may have a marked limitation when several activities or functions are impaired, or even when only one is …“[M]arked” does not imply that you must be confined to bed, hospitalized, or in a nursing home.” HIV/ Hep C: Co-Infection “We consider . . . the interactive and cumulative effects of your treatments. For example, many individuals with immune system disorders receive treatment both for their immune system disorders and for the manifestations of the disorders or co- occurring impairments, such as treatment for HIV infection and hepatitis C. The interactive and cumulative effects of these treatments may be greater than the effects of each treatment considered separately.” Toxoplasmosis A definitive diagnosis of toxoplasmosis of the brain is based on brain biopsy, but this procedure carries significant risk and is not commonly performed. This condition is usually diagnosed presumptively based on symptoms or signs of fever, headache, focal neurologic deficits, seizures, typical lesions on brain imaging, and a positive serology test. HIV in Women “Many of these manifestations (for example, vulvovaginal candidiasis, pelvic inflammatory disease) occur in women with or without HIV infection, but can be more severe or resistant to treatment…” Drug Holiday A structured treatment interruption (STI, also called a “drug holiday”) is a treatment practice during which your treating source advises you to stop taking your medications temporarily. An STI in itself does not imply that your medical condition has improved; nor does it imply that you are noncompliant… Practice Tips Ask the client to keep a calendar of symptoms, medications and side effects for a few weeks. More time than this can be depressing for the client and repetitive for the judge. Submit to the judge with brief. Get a printout from the pharmacy for the past several years, usually this is an very impressive list and obviates putting it into the OHA form. UWA, TWP, EPE, EXR Effect: as the wait for hearing lengthens, more people will be forced to try to work. Don’t give up on the cases with episodic work, they are complicated but can be won. Further Revision of 14.08 Needed Further revisions to the HIV infection listings are needed to reflect advances in medical knowledge, treatment, and methods of evaluating HIV infection to address problems individuals disabled by HIV infection have faced in SSA claim evaluations Further Revision of 14.08 Needed 1. Written guidance and training are needed on some important issues A. Consideration of subjective evidence B. Consideration of claimants who are non- responsive to treatment Further Revision of 14.08 Needed 2. Specific changes are needed for some of listings to reflect current understanding of appropriate objective and subjective indicators of those impairments Specific Changes Needed for Listings A. Add Medical Criteria for Co-infection With Hepatitis B or Hepatitis C (Section 14.08(D)) Specify that interplay of the two infections must be considered on an individualized, case-by-case basis B. Accept Subjective Evidence Related to Diarrhea (Sections 14.08(I) & 114.08(I)) Specify clinical indicators, not just objective indicators Further Revision of 14.08 Needed 3. Chronic pancreatitis should be added as a “stand-alone” listing Further Revision of 14.08 Needed 4. Additional manifestations should be referenced in Section 14.08(K) & 114.08(L) A. Add general language: “Special consideration should be given to other conditions, signs and symptoms deemed by the primary care provider as contributing to substantial functional limitations.” Reference Additional Manifestations B. Reference specific additional manifestations that impair the functional capacity of a person with HIV 1. Impaired mental functioning 2. Morphological abnormalities 3. Metabolic abnormalities 4. Infarction and cardiac problems Resources for PLWA Newly infected HIV+ claimant being treated @ a county facility and not getting access to meds, labs, -- should be eligible under Ryan White Care Act for free medical treatment at an approved AIDS medical facility. ADAP pays for medications, part of prevention for the uninsured. Google it. To Join HIV List Serve A great daily conversation on what’s new in the world of HIV Legal: http://service.wnylc.com/email.signup/email.sig nup.cgi For Further Information contact info again: – Sarah Patterson, firstname.lastname@example.org All these slides available to download at www.sarahpattersonlaw.com, under what’s new tab. Comment letters to SSA available from Lambda Legal website (www.lambdalegal.org) See also: Sarah’s snappy new blog on HIV issues related to disability: www.sarahpattersonlaw/news. Exchange links? Leave a comment?
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