Paul Volberding, M.D. (Chair) Igor Grant, M.D., FRCP John G. Bartlett, M.D. H. Clifford Lane, M.D. Celia Maxwell, M.D., FACP Carlos del Rio, M.D.

Transcription

1 HIV and Disability

2 Committee membership Paul Volberding, M.D. (Chair) San Francisco VA Medical Center John G. Bartlett, M.D. Johns Hopkins University Carlos del Rio, M.D. Emory University Patricia M. Flynn, M.D. St. Jude Children s Research Hospital Larry Gant, Ph.D. University of Michigan Igor Grant, M.D., FRCP University of California San Diego H. Clifford Lane, M.D. National Institutes of Health Celia Maxwell, M.D., FACP Howard University Heidi Nass, J.D. University of Wisconsin HIV/AIDS Comprehensive Care Program Ira Shoulson, M.D. University of Rochester Ann Williams, Ed.D., RNC, FAAN University of California Los Angeles

3 Charge to the committee Review the current medical criteria for disability resulting from HIV infection in SSA's Listing of Impairments and identify areas in which the HIV Listings should be revised and updated based on current medical knowledge and practice.

4 Committee process 12 month study 3 face-to-face meetings 2 public workshops 9 site visits to DDSs Data collection from leading cohorts Extensive literature review 10 external reviewers

5 Key findings SSA s HIV infection disability criteria need to reflect that HIV/AIDS has changed from a fatal disease to a chronic, manageable disease Limited evidence exists describing the association between HIV infection and disability

6 Key messages Develop new measures to stage HIV infection and identify limitation in work-related functioning in the following 4 areas: CD4 count 50 cells/mm 3 Imminently fatal or severely disabling conditions HIV-associated conditions not covered in other parts of the Listing of Impairments HIV-associated conditions covered in other parts of the Listing of Impairments

7 Key messages SSA could maximize the utility of the Listing by: Using SSA data to guide changes to the Listings Revising the SSA forms to reflect changes in the Listings Broadening the sources of medical evidence

8 Recommendation 1 SSA should use CD4 count as an indicator of disability. Specifically, CD4 50 cells/mm 3 is an indicator that a claimant s HIV infection is disabling. This allowance should be periodically reevaluated by SSA.

9 Recommendation 2 SSA should make disability determination allowances permanent for imminently fatal and/or severely disabling HIVassociated conditions. These conditions may be appropriate as compassionate allowances. These include the following: HIV-associated dementia; Multicentric Castleman s disease; Kaposi s sarcoma involving the pulmonary parenchyma; Primary central nervous system lymphomas; Primary effusion lymphoma; and Progressive multifocal leukoencephalopathy.

10 Recommendation 3 SSA should continue to include measures of functional capacity in the HIV Infection Listings and update these measures with research advances.

11 Recommendation 4 Comorbidities induced by HIV infection or adverse effects of treatment should be considered disabling if they markedly limit functioning in one or more of the following areas: ability to perform activities of daily living; maintenance of social functioning; or completion of tasks in a timely manner due to deficiencies in concentration, persistence, or pace. This includes but is not limited to, the following conditions: Diarrhea; Distal sensory polyneuropathy; HIV-associated neurocognitive disorders; HIV-associated wasting syndrome; Kaposi s sarcoma; Lipoatrophy or lipohypertrophy; and Osteoporosis. Symptoms such as fatigue, malaise, and pain should also be considered if found to limit functioning. Periodically, SSA should reevaluate claims made using these comorbidities, consistent with the reevaluation of other disability allowances.

12 Recommendation 5 SSA should cross-reference the following HIV-associated conditions to existing listings: Cardiovascular disease (Listings 4.00 and ); Chronic kidney disease, including HIV-associated nephropathy (Listings 6.00 and ); Diabetes (Listings 9.08 and ); Hepatitis (Listings 5.05 and ); and Malignancies (Listings and ), not otherwise specified in the report.

13 Recommendation 6 SSA should ensure that the HIV Infection Listings in Parts A and B of the SSA Listing of Impairments are constructed similarly. However, conditions specific to children not found in adults should also be listed in Part B, including ageappropriate CD4 and developmental criteria, neurological manifestations of HIV infection and HIV-related growth disturbance.

14 Recommendation 7 SSA should rewrite the introductory text for Parts A and B of the SSA Listing of Impairments by: a. Simplifying and reorganizing the text to address the appropriate audiences, and b. Consolidating all HIV references into one section.

15 Recommendation 8 SSA should use its database to maximize the utility of the HIV Infection Listings by: a. Collecting and analyzing data to evaluate its effectiveness; and b. Making data more widely accessible for outside analysis to better inform its currency and efficiency.

16 Summary Update listings to reflect the state of medical practice Include measures of functioning in HIV infection sublistings based on concurrent conditions Reevaluate most HIV infection allowances

17 For more information about the report and to download the summary: