September 23, 2010

September 23, 2010
Social Security and HIV

Welcome to another day in my life. Today is Thursday and I hope you are having a safe and great week so far. Dab the AIDS Bear and I are resting up while getting ready for our HIV Expo this coming weekend among other events.

Today I would like to talk about HIV and Social Security. A new report issued by the Institute of Medicine (IOM) on September 13 says the criteria used by the U.S. Social Security Administration (SSA) to gauge HIV related disability is outdated and should be overhauled to include new qualifications based on CD4 cell counts and specific sets of medical conditions.

The IOM recommendations, which have yet to be officially reviewed by SSA, reflect the fact that modern day antiretroviral (ARV) therapy can often improve the health of HIV positive people with low CD4 counts or a history of AIDS related opportunistic infections and, in turn, effectively reduce the need for disability benefits. The report also stresses the need for disability benefits for people living with HIV experiencing certain non AIDS related complications and ARV treatment related side effects that can lead to disability.

The HIV Infection Listings, established in 1993, are the criteria currently used to determine whether people living with HIV are disabled by their infection and eligible for benefits. For example, a person living with HIV may be eligible for Social Security Disability Insurance (SSDI) and Medicare once an AIDS diagnosis has been established, characterized by the development of a serious opportunistic infection, such as Mycobacterium avium complex or cytomegalovirus, or a documented CD4 count below 200 cells. Other benefits, including Social Security Income (SSI) and Medicaid, are dependent on financial criteria as well as disability status.

Since the Listings were created, the IOM report argues, HIV care has advanced and the disease has dramatically changed from a uniformly fatal condition to a potentially chronic manageable infection, in which CD4 cell recovery and a return to physical health and ability to work is an expected positive consequence of contemporary ARV treatment. Conversely, a number of non AIDS related health complications are becoming increasingly prevalent among people living with HIV receiving ARV therapy such as neurocognitive impairment, chronic kidney disease, osteoporosis and a number of treatment associated side effects many of which can cause disability and were not included in the original 1993 HIV Infection Listings.

To account for the more recent reality that opportunistic infections can be cured or prevented by ARV treatment and prophylaxis, the potential health consequences of ARV therapy and the increasing prevalence of conditions that can occur jointly with HIV infection, IOM is now recommending to SSA that people living with HIV meet one of the following criteria to qualify for disability benefits:

* A CD4 cell count at or below 50 cells per cubic millimeter of blood serum, a laboratory benchmark that indicates an advanced stage of illness.
* One of a few rare but fatal or severely disabling HIV-associated conditions, such as pulmonary Kaposi's sarcoma, lymphoma and dementia.
* An HIV associated condition that appears in another section of SSA’s full Listing of Impairment, such as cardiovascular disease, chronic kidney disease and hepatitis.
* An HIV associated condition that is not already included in any other section, such as neuropathy, neurocognitive disorders and wasting syndrome.

In addition to IOM’s disability defining criteria recommendations, it also stresses the importance of mandated, regular reassessments of a person’s disability status by the SSA. “Since antiretroviral treatment often allows clinical improvement over a period of one or two years,” the IOM report suggests, “the committee believes claimants allowed under such a listing should be reevaluated periodically for disability status. The committee believes three years would allow for a sustained response and is the maximum practical period for Social Security Administration (SSA) reassessment.”

For example, in a person living with HIV deemed disabled because of a CD4 count below 50 cells, “if the claimant’s CD4 count exceeds the minimum threshold and the claimant is not disabled according to other sublistings [after three years], he should no longer receive disability benefits. However, in the event that the CD4 count drops below 50 cells, his disability benefits should be reinstated.”

IOM notes that the proposed revisions to the Listings affect new HIV positive SSDI and SSI applicants only and are not to be applied retroactively. While this means that people currently receiving SSDI or SSI, based on the 1993 HIV Infection Listings, will not be automatically disqualified if they do not meet the proposed criteria revisions, it is unclear if the qualifications for continued disability benefits in the proposed SSA reassessment recommendations will apply to current SSDI/Medicare and SSI/Medicaid recipients.

"The SSA claims process for people infected with HIV once reflected an early belief that HIV infection would result very quickly in an opportunistic infection or malignancy and lead to death over a short period," the IOM authors write. "Medical advances and constant scientific progress have rendered those ideas out of date, as people infected with the virus can live longer, and more medically complicated, lives. Today, disability in HIV-infected claimants can be more precisely identified by clinical markers and specific sets of medical conditions. By updating the HIV Infection Listings to better reflect current clinical practice, SSA will be able to more accurately identify those people in need of Social Security disability benefits."

So what are your thoughts on the issue? Drop me a line and let me know. Until we meet again; here's wishing you health, hope, happiness and just enough.

big bear hug,

Daddy Dab