SSA Policy Conference: HIV Infection in the Disability Programs New York, NY; September 10, 2008

1. SSA Policy Conference: HIV Infection in the Disability ProgramsNew York, NY; September 10, 2008 HIV-LEGAL JOINT COMMENTS ON SSA’S ANPRM RE REVISED MEDICAL CRITERIA FOR EVALUATING HIV INFECTION Bebe J. Anderson, HIV Project Director, Lambda Legal

2. Timeline • 2003, May 9 ANPRM for 14.00 & 114.00 published • 2003, July 8 Joint comments submitted re HIV • 2006, Aug. 4 Proposed Rules issued • 2006, Oct. 3 Joint comments submitted re HIV • 2008, Mar. 18 Final Rules issued (effective 6/16/08) • 2008, Mar. 18 ANPRM for 14.08 & 114.08 published • 2008, May 19 Joint comments submitted re HIV

3. Comments on ANPRM – Working Group • AIDS Law Project of Pennsylvania • AIDS Legal Council of Chicago • Disability Law Center • Gay Men’s Health Crisis • Health Advocates, LLP • Kendra S. Kleber & Associates PLLC • Lambda Legal • National Law Center on Homelessness & Poverty • National Organization of Social Security Claimants’ Representatives • The Center for HIV Law and Policy • South Brooklyn Legal Services • Whitman-Walker Clinic

4. Comments on ANPRM – Signatories • 37 National, Regional and State Organizations • 8 Individuals

5. Comments on ANPRM – Main Points • 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 • Written guidance and training are needed on some important issues • Specific changes are needed for some of listings • to reflect current understanding of appropriate objective and subjective indicators of those impairments • Chronic pancreatitis should be added as a “stand-alone” listing • Additional manifestations should be referenced

6. Request For Written Guidance & Training • Consideration of subjective evidence • Consideration of claimants who are non-responsive to treatment

7. Request For Written Guidance & Training • Consideration of Subjective Evidence

8. Consideration ofSubjective Evidence Changes needed: • Add: “Manifestations of HIV infection may be established in absence of objective findings based on the claimant’s treating physician’s assessment of the impact of impairments and manifestations of impairments on the claimant.”

9. Consideration ofSubjective Evidence Changes needed: • Provide continuing guidance and training re: • Symptoms and signs considered by HIV specialists to be reliable evidence of impairments or manifestations of impairments • Other evidence considered by HIV specialists to be equivalent to evidence specified in listings • Other combined manifestations of impairments that impact claimants’ functional abilities comparably to the combined manifestations specified in the listings

10. Request For Written Guidance & Training • Consideration of Claimants Who are Non-responsive to Treatment

11. Consideration of Claimants Whoare Non-responsive to Treatment Changes needed: • Case-by-case analysis of whether claimant meets listings should take into account: • Fragile and tenuous position of a person with HIV who has experienced persistent resistance to a medication regimen • Limitations imposed in order to avoid risk of subsequent infection

12. Request for Specific Changes in Some Listings • Add Medical Criteria for Co-infection With Hepatitis B or Hepatitis C (Section 14.08(D))

13. Add Medical Criteria for Co-infection With Hepatitis B or Hepatitis C • Changes needed: • Add medical criteria for co-infection with Hepatitis C or Hepatitis B in Sections 14.08(D) and 114.08(D) • Specify that interplay of the two infections must be considered on an individualized, case-by-case basis

14. Request for Specific Changes in Some Listings • Accept Subjective Evidence Related to Diarrhea (Sections 14.08(I) & 114.08(I))

15. Accept Subjective Evidence Related to Diarrhea • Changes needed: • Listing needs to specify clinical indicators, not just objective indicators • Replace requirement for “intravenous hydration, intravenous alimentation, or tube feeding” with the following indicators of disabling diarrhea: “inability to maintain weight, discomfort, abdominal pain, and unpredictability of the diarrhea”

16. Comments on ANPRM –Main Points • Add Chronic Pancreatitis as a “Stand-alone” Listing

17. Add Chronic Pancreatitis as a “Stand-alone” Listing • Changes needed: • Add chronic pancreatitis as a “stand-alone” listing • based on evidence of incomplete clinical recovery • accompanied by clinical findings and disabling symptoms (such as, but not limited to, persistent abdominal pain, diarrhea, significant weight loss, nausea, anorexia, or glucose intolerance requiring frequent monitoring or treatment) • exclude individuals who suffer a transient episode of pancreatitis that resolves after a change in medication

18. Comments on ANPRM –Main Points • Additional Manifestations Should be Referenced in Sections 14.08(K) & 114.08(L)

19. Reference Additional Manifestations in Sections 14.08(K) & 114.08(L) • Changes needed: • Add general language to 14.08(K) and 114.08(L): “Special consideration should be given to other conditions, signs and symptoms deemed by the primary care provider as contributing to substantial functional limitations.” • Reference specific additional manifestations that impair the functional capacity of a person with HIV: • Impaired mental functioning • Morphological abnormalities • Metabolic abnormalities • Infarction and cardiac problems

20. Comments on ANPRM • Comments available at: • http://www.lambdalegal.org/our-work/in-court/other/ssa_letter_revising-medical-criteria-evaluating-hiv-infection.html • Or go to www.lambdalegal.org and search “SSA” • Or email me at: banderson@lambdalegal.org