Yes, SSA Disability Just Made a Slight Change for HIV-Positive Recipients. No, You Shouldn't Freak Out.

Tim Murphy
Tim Murphy
Edwin Pabon

Some folks are rather concerned, to say the least, over a recent "emergency message" from Social Security. It explains that SSA (disability) recipients who qualified because they have HIV will now be subject to routine reviews of their eligibility status every one to seven years.

In the more than 25 years prior, recipients with HIV were not subject to such reviews. Now, some are upset and suspect that the change is a part of the scary new Trump/GOP era. "This is the beginning of the end," one wrote on an HIV disability email chain.

In a time of threatened cuts to other forms of health care access, the fact that Medicare coverage is linked to SSA eligibility increases the anxiety about this change.

However -- you should NOT be freaking out, according to HIV benefits expert Justin Hayford, a legal advocate at Legal Council for Health Justice (formerly AIDS Legal Council of Chicago). He told TheBody.com that this change has been years in the making.

"I'm surprised it hasn't happened sooner," he said, given that, since at least 2000, Social Security has no longer considered HIV diagnosis alone to be a stand-alone cause for ongoing inability to work.

All the change means, he said, is that people who get SSA disability because of their HIV will have their case reviewed every few years along with everyone else on SSA. (Only people living with HIV who have certain other conditions, such as certain lymphomas or sarcomas, will be excluded from the need for review.)

But, even when or if your review happens, it's likely your SSA won't be taken away because you may have other diagnoses that qualify you for disability, such as chronic neuropathy, diarrhea, fatigue, depression, anxiety, bipolar disorder, heart disease, diabetes -- or any other number of conditions that often go hand in hand with an HIV diagnosis (especially among HIV long-timers).

The most important thing to know and do? Be meticulous in documenting all your health issues with your doctor, even if they include things such as neuropathy, fatigue or gastrointestinal problems that you've lived with so long that you no longer bring them up at doctor visits. Having them on the record will be crucial when and if your disability benefits do come up for review. (And even that may depend on how much staff SSA has.)

This cannot be stressed enough. "Make sure your doctor is putting these things in your medical record if SSA does a review!" insisted John Peller, president/CEO of AIDS Foundation of Chicago, to TheBody.com.

"This Is Not a Trump-Era Hunt to Kick You off the SSA Rolls"

Beyond that, you should take a deep breath. "It's really important to assure people with HIV that this is not a Trump-era hunt to kick you off the SSA rolls," said Hayford. "It just means you'll be treated like everyone else on SSA, to reflect changes in HIV treatment the past many years."

According to Hayford, SSA anxiety reflects anxiety he is hearing from clients about losing their Ryan White (ADAP) coverage under Trump and a GOP Congress. That, too, is not grounds for worry, he said. "There's been longstanding bipartisan support for Ryan White, and I don't think that will change."

While there's hope that ADAP programs will remain strong, there's real concern that HIV care may be affected by changes coming down the pike from the administration and Congress.

So the real causes for freak-out right now, Hayford said, are the ongoing threats to Medicaid and Obamacare. He urges you to get involved in the fight to keep them. Families USA is a great place to get involved, he said. "Or, look around for groups in your area that are protesting against the cuts."

You can start by calling your local or regional HIV/AIDS agency.