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HIV and Disability: Updating the Social Security Listings
allowances in the HIV Infection Listing (see Figure 1-2). In the absence of a single, widely used measure of functioning for people living with HIV/ AIDS, the committee believes these three measures should be retained in a revised listing.
RECOMMENDATION 3. SSA should continue to include measuresof functional capacity in the HIV Infection Listings and update thesemeasures with research advances.
Although opportunistic infections now occur, albeit at a lower rate, they can still be associated with early mortality. Based on data received from the NA ACCORD and EuroSIDA databases (Justice et al., 2010; Mocroft and the EuroSIDA Study Group, 2010), the committee believes that the majority of HIV-infected people with severe opportunistic infections would be captured by a CD4 ≤ 50 cells/mm3 listing, as discussed in Chapter 3. Disability assessment could also be triggered by poor functional status based on the above three measures of functioning; such allowances could “equal” a listing or be determined at a later stage.
CONDITIONS CURRENTLY WITHOUT LISTINGS
Advances in treatment have reduced the frequency of many opportunistic infections and manifestations currently in the HIV Infection Listings. These infections and manifestations are generally less common, no longer necessarily permanently debilitating, or less predictive of disability than they were in 1993 when the HIV Infection Listings were developed. It is now uncommon for patients to present with these manifestations to the point that they are both unresponsive to standard therapy and completely disabled. For example, diarrhea attributed to HIV infection that is resistant to treatment and lasting for more than 12 months is extremely uncommon today. These manifestations can become persistent as a result of late-stage AIDS that is untreated or unresponsive to treatment due to increased drug resistance or nonadherence with persistent viremia. The committee assumes that allowances for these conditions would be made based on the notion that HIV-associated conditions would be chronic, as the SSA definition of disability requires that the impairment last for a minimum of 12 months or result in death. Other unlisted conditions could conceivably be considered as medically equaling the Listings.
Two major causes of diarrhea are associated with HIV: opportunistic infections (e.g., cryptosporidiosis, microsporidiosis) and adverse reactions