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Institute Of Medicine Recommends Updating Guidelines For Granting HIV/AIDS-Related Disability Benefits

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Published: Sep 24, 2010 3:25 pm
Institute Of Medicine Recommends Updating Guidelines For Granting HIV/AIDS-Related Disability Benefits

According to a new report issued by the Institute of Medicine, the guidelines used by the Social Security Administration to determine whether someone with HIV qualifies for disability benefits should be updated to reflect advances in treatment.

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.

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.

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.

“The current listings (the way disability is given most quickly) were published in 1993 and have never been updated despite the revolution in care and outcome, and despite a new understanding of drug toxicity and the effects of long standing infection,” said Dr. Paul Volberding, chair of the committee that created the new guidelines.

Since then, the introduction of highly active antiretroviral therapy (HAART) has transformed HIV from a fatal disease into a potentially chronic, manageable condition. As a result, SSA requested that the Institute of Medicine recommend new criteria for establishing whether or not a person with HIV is considered disabled.

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.

Recommended criteria are slightly different for children, with CD4 count thresholds of 500 cells per microliter or less for children less than 1 year of age; 200 cells per microliter or less for children aged 2 to 5 years; and 50 cells per microliter or less for children older than 5 years.

“The new rules would allow an essentially immediate determination [of disability eligibility] if the CD4 count had fallen below 50,” said Dr. Volberding, “and would also continue to allow disability for a wide (but much more current) set of HIV conditions and drug toxicity.”

“Most disability for HIV is based on having had an OI [opportunistic infection], and as those are increasingly uncommon, the revisions might well increase access to disability for qualifying people,” he added.

The report also suggests that SSA reevaluate the disability status of patients granted assistance every three years, since HAART and other treatments can lead to improvements in health and ability to function over time.

Currently, the HIV Infection Listings allow claimants to receive permanent benefits and do not require periodic reevaluations of health status.

Dr. Volberding noted that the Listings are not the only way to be approved for disability benefits. “The listings are only one way disability is allowed. Anyone who is unemployed can petition for disability through the process that involves direct examination,” he said.

Finally, the committee recommended that SSA rewrite the introductory text that explains how to interpret and use the HIV Infection Listings. The report states that the current introduction is confusing and difficult to read and advises SSA to reorganize and simplify the text.

For more information, please see the full report by the Institute of Medicine.

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