Change in Social Security Disability: HIV-Positive Recipients May Now Have to Go Through Reviews

People living with HIV (PLWH) who receive government disability checks have previously received that income without going through reviews.

As of March 1, the Social Security Administration (SSA) began requiring that PLWH prove they are still disabled. Like others receiving disability payments, they will have to go through a Continuing Disability Review (CDR). These are conducted every one to seven years.

There are exceptions. Not subjected to a CDR are those with HIV who have

  • Multicentric Castleman disease,
  • primary central nervous system lymphoma,
  • primary effusion lymphoma,
  • progressive multifocal leukoencephalopathy, or
  • pulmonary Kaposi sarcoma.

"The big take-away here: if you are receiving disability benefits, it is very important to stay in medical care. Document every symptom and have your doctor note them. Document, document, document," said Marina Kurakin of the Legal Council for Health Justice, in Chicago, who wrote "Money Trail" in the November + December 2016 issue of Positively Aware.

She said that one of the biggest concerns now is those who received disability based on mental health status but are not currently seeing a therapist and individuals who are working part-time while receiving disability benefits.

Previously, PLWH were screened out of CDRs. That simply means that they did not have to undergo the reviews. Today, some of those people are actually very healthy. A review may put their disability income at risk.

It's not yet known when CDRs are expected to begin for people living with HIV. Legal advocates for PLWH, however, point out that the Social Security Administration moves slowly. If there are staff and budget cuts, SSA can be expected to move even more slowly.

Said Bashirat Osunmakinde, Director of Care for the AIDS Foundation of Chicago, in an e-mail to area providers, "The important take-away for HIV-positive folks on disability is this: do your best to keep up with your medical appointments, get all the care you need, and make sure your doctor/nurse/PA/therapist knows everything that's going on with you. If you do not have ongoing medical records, then when your CDR comes up you won't have much evidence that you are still disabled. Do not tell your doctor, 'I'm fine,' if in fact you are having a lot of trouble with diarrhea and fatigue and neuropathy. Many clients have been so used to their long-standing symptoms that they do not even talk about them with their medical providers anymore, and when they do not communicate their ongoing, longstanding problems to their providers, those problems disappear from the medical record, and thus no longer exist in the eyes of Social Security."

Osunmakinde also strongly advised Social Security disability recipients to stress to their providers the need to chart everything. "Often, providers will not note in medical records the longstanding, unchanging problems, because they are not actively treating them," he wrote.

The SSA change came about after the agency revised its criteria for evaluating HIV as a disability on January 17.

See "Yes, SSA Disability Just Made a Slight Change for HIV-Positive Recipients; No, You Shouldn't Freak Out" at Information about the SSA change, while a little technical, can be found at

This article originally appeared in the May/June issue of Positively Aware and was cross-posted with the permission of TPAN. Read the original article.