PI Action alerts & updates ... 2008

Project Inform and its partners respond to the SSA’s proposal to review and revise HIV disability listings

May 19, 2008

Michael J. Astrue
Commissioner of Social Security
Social Security Administration
PO Box 17703
Baltimore, MD  21235-7703

RE:
Advance Notice of Proposed Rulemaking, Docket #SSA-2007-0082
Comments on Revising Medical Criteria for Evaluating HIV Infection
           
Dear Commissioner Astrue:

We are submitting comments on behalf of the HIV Medicaid and Medicare Working Group (HMMWG) regarding the Advance Notice of Proposed Rulemaking, Docket No. SSA-2007-0082 that sought comments on revising the disability medical criteria for HIV infection. HMMWG is a coalition of 84 national and community-based AIDS services organizations that represent HIV medical providers, advocates, public health workers and people living with HIV/AIDS committed to ensuring that people living with HIV/AIDS have access to appropriate, cost-effective health care and drug treatment.

We are writing to reiterate our strong support for maintaining the Stand-Alone Listings contained in section 14.08 and 114.08. The listings are critical to ensuring that people living with HIV/AIDS do not experience life-threatening delays in accessing disability and health care benefits. Despite medical HIV advances in HIV medicine, many people living with HIV/AIDS continue to be diagnosed very late in the disease process and are less responsive to HIV treatment. Furthermore, responsiveness to HIV treatment is unique to each person living with HIV/AIDS, particularly in terms of the long-term medical management of the disease as individuals develop resistance to drug treatments and develop debilitating side effects and co-occurring conditions as a result of the cumulative effects of HIV treatment.  However, there are additional improvements that could be made to the listings, and we urge you to consider the “HIV Joint Legal Comments” submitted by the legal community.

We appreciate the thoughtful approach that the Social Security Administration (SSA) took to evaluating the medical criteria for determining disability due to immune systems disorders, including HIV disease. A process that began in 2003 and included two comment periods in addition to public forums on the East and West coasts. The final listings reflect this process and better represent the realities of living with HIV today. We were pleased to see that the listings now recognize that the serious side effects of HIV treatment are potentially disabling and are often indistinguishable from the symptoms associated with HIV disease. We also strongly support the expanded guidance that is now provided within the “Repeated Manifestations of HIV Infections” section, which now better describes the diversity of disabling conditions and symptoms experienced by people living with HIV/AIDS.

Thank you for the opportunity to comment in advance of the proposed rulemaking. Please consider the HMMWG a resource as the Social Security Administration moves forward with this process.  We also would welcome the opportunity to meet with you regarding this issue and to discuss initiatives to create more flexible linkages between disability assistance and health care coverage. Please contact us through Andrea Weddle at (703) 299-0915 or aweddle@idsociety.org.

Respectfully Submitted by the
HIV Medicare and Medicaid Working Group Steering Committee:
AIDS Action, Washington, DC
AIDS Alliance for Children, Youth and Families, Washington, DC
AIDS Foundation of Chicago, Chicago, IL
The AIDS Institute, Washington, DC
AIDS Project Los Angeles, CA
American Academy of HIV Medicine, Washington, DC
Community HIV/AIDS Mobilization Project, New York, NY
Gay Men’s Health Crisis, New York, NY
Health & Disability Advocates, Chicago, IL
HIV Medicine Association, Arlington, VA
Housing Works, New York, NY
Indiana Minority Health Coalition, Indianapolis, IN
Lifelong AIDS Alliance, Seattle, WA
National Alliance of State and Territorial AIDS Directors, Washington, DC
National Association of People With AIDS, Silver Spring, MD
National Health Law Program, Los Angeles, CA
National Minority AIDS Council, Washington, DC
New York AIDS Coalition, New York, NY
Project Inform, San Francisco, CA
San Francisco AIDS Foundation, CA
Title II Community AIDS National Network, Washington, DC
Treatment Access Expansion Project, Boston, MA