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IOM proposes changes to SSDI eligibility for HIV patients

Good news for HIV patients? Perhaps.

IOM proposes changes

According to a Sept. 24 post at a lesbian/gay/bi/trans/ (LGBT) site reporting from Dallas, Texas, the Institute of Medicine has an idea to further HIV patients qualifications for Social Security programs. At The Aids Beacon (, they're saying, "The report recommends new criteria for determining whether an HIV-positive individual qualifies for disability benefits. The new guidelines also suggest reevaluation of disability status for most people with HIV every three years."

Proposal woould include new patients only

However, if you, friends or loved ones are affected, rein in your hopes for long-term patients--this would apply to new apps, only: "If adopted by the Social Security Administration (SSA), the guidelines would apply only to new applications; they would not be applied retroactively to people with HIV who are already receiving disability benefits." Here's the .edu page for the institute, where you can find two links: this one is to the Sept. 13 paper entitled "HIV and Disability: Updating the Social Security Listings." The second is to a Sept. 16 report called "HIV Screening and Access to Care: Exploring Barriers and Facilitators to Expanded HIV Testing."

Listings of Impairments

According to
To determine if someone is eligible to receive disability, SSA consults its lists of health conditions, called Listings of Impairments. Individuals who are not working and who have a medical condition included in the Listings are usually considered disabled by SSA, and they can be approved for benefits more quickly and in fewer steps. The HIV Infection Listings, created in 1993, are the guidelines used to determine whether people with HIV are considered disabled and eligible for disability benefits. At the time they were created, people infected with HIV usually died within a few years due to AIDS-related illnesses.

IOM says Infection Listings outdated

There's a bunch of useful info at these sites, with AidsBeacon taking the lead at sorting it out. For example, the IOM prelim page says, "In its report, the IOM finds that the HIV Infection Listings, which were developed in 1993, no longer adequately reflect medical reality. Over the past 15 years, advances in therapy have changed the course of HIV infection, and more people are living longer with HIV/AIDS. But their treatments require lifelong daily medications that may have significant side effects. The IOM recommends that SSA incorporate assessments of a claimant’s work-related functional capacity in the HIV Infection Listings. The IOM also identifies a series of actions that SSA can take to maximize the utility of the HIV Infection Listings."

Proposal aims to clarify eligibility

But the AidsBeacon site further explains:
Under the current guidelines, a person with HIV must have a confirmed HIV-positive diagnosis and an illness that indicates their immune system has been compromised in order to be considered a disabled person. These illnesses include opportunistic infections (infections that do not usually develop in individuals with healthy immune systems) and AIDS-defining cancers. The Listings contain a list of recognized AIDS-related opportunistic infections and cancers. With the new recommendations, an applicant would be eligible for benefits if he or she has one of the following conditions:
  • A CD4 (white blood cell) count at or below 50 cells per microliter of blood, a threshold that indicates an advanced stage of illness
  • One of a few rare but fatal or severely disabling HIV-associated conditions, such as dementia or certain types of AIDS-related cancers. The committee advises that benefits for these diseases should be permanent.
  • An HIV-associated condition, such as heart disease or hepatitis, that is already covered by another section of SSA’s full Listing of Impairments
  • An HIV-associated condition, such as wasting syndrome, that is not already included in another section but that significantly impairs a person’s ability to function.

'Consistency across ages'

Children who receive disability benefits must reapply upon turning 18.  From the .pdf of the brief of the report, "The IOM report recommends that to allow for a smooth transition, the HIV Infection Listing used for children should follow as closely as possible to that for adults. However, conditions specific to children and not found in adults should be retained. Such child-specific conditions should include neurological manifestations of HIV infection and HIV-related growth disturbances, and age-appropriate CD4 cell counts should be used in determining disability."

Text found confusing

The report also takes aim at the preliminary text to the detailed listings. Acknowledging that the text "helps guide interpretations of how the listings are implemented," the IOM also finds that the text is "confusing, disjointed, and difficult to read." Therefore, the group recommends that  "SSA should rewrite the introductory text with the aims of simplifying and reorganizing the text to address appropriate audiences."

More access to data

The group also wants the SSA to change its data-access policy, presumably without risking personal privacy, in a way that would benefit all patients.
Additionally, SSA collects data on each claim submitted, and evaluating these data can be important in identifying trends and patterns in the management and care of HIV infection. Such insight can help in detecting newly emerging clinical manifestations of HIV infection, assessing long-term adverse events of treatment, determining the consequences of nonadherence and resistance to HIV therapies, and informing future changes to the Listings. To aid in these efforts, SSA should revise its current policy of not making its data publicly available, as allowing wider access to outside groups and analysts could result in improving the timeliness and applicability of the HIV Infection Listings.

Group leader questions CD4 count

The LGBT site takes all this with a wary eye. "AIDS Arms Executive Directors Raeline Nobles said current regulations allow disability for people with a CD4 count of 200. She said that she sees many people now who can get along OK with a CD4 count of 100. “ 'But politically, it might be a way to cut some expensive corners,' she said. "She said reassessing over time might be reasonable. “ 'Over time some do get better,' she said. 'But 50 seems awfully low to me.' ”