Thursday, February 20, 2020

Barriers Ahead for People Living with HIV on Social Security Disability Insurance?

By: Marcus J. Hopkins, Policy Consultant & Guest Contributor 

It’s been a tough few years for people living with HIV…at least as it relates to the determination of healthcare and disability benefits. After nearly a decade of hard-fought and mostly won battles to increase access to healthcare services and improve the quality of life for people living with HIV, the Trump Administration has spent three years doing its damnedest to roll back every one of those improvements via a death from a thousand cuts.

Those who are reading the ADAP Advocacy Association blog are likely familiar with HIV and the deteriorating effects the disease has on the body, particularly in those who have lived with the disease for a long time, have endured the effects of some of the earliest HIV medication regimens, have allowed the disease to go untreated, or are simply older and living with HIV. This is why most benefits-related decisions involving HIV have, traditionally, been made by or in consultation with infectious disease advocates, healthcare providers, or scientists who can explain to government officials how the disease works and why it is important to ensure that people living with HIV are able to remain productive members of society.

The Trump Administration, however, has openly done away with the antiquated and ridiculous notion that important decisions require expert knowledge and input. Instead, decisions have been made with virtually no notice, catching advocates and experts off guard across every aspect of our national governance. Those working in and around HIV (and virtually every other infectious disease) have spent three years attempting to figure out what move comes next from an administration that is flighty, capricious, unwilling to listen to reason, and unable to forecast next moves any better than anyone else.

In a recent meeting of the Federal AIDS Policy Partnership, this was the common refrain: “We have no idea how to plan for 2020, much less for 2021, because nobody knows what’s going to happen, next.” This sentiment was applied to Medicaid coverage, Social Security Disability Insurance (SSDI), and the President’s much vaunted, but unfunded Ending the HIV Epidemic (EHE) plan designed to decrease the number of new HIV infections in the U.S. by 75% by 2025.

On the SSDI front, since March 1st, 2017, people living with HIV have been subject to a Continuing Disability Review (CDR) to determine whether or not they are “still disabled”. This decision was reached because, rather than acknowledging the long-term impacts of HIV on the human body, this administration has chosen, instead, to look at those who are able to live and work without enduring many of the long-term side-effects of early HIV regimens or the deterioration of the body that people living with HIV face as they age. This is the famous argument of, “Well, you don’t look disabled to ME,” put into cruel effect.

Social Security Disability Claim, Denied
Photo Source: PCT Law Group, PLLC

CDRs generally fall into one of three categories: “Medical Improvement Expected” (six-month to 18-month reviews), “Medical Improvement Possible” (reviews every three years), and “medical improvement not expected” (reviews every seven years). The Trump Administration is proposing a new category called, “Medical Improvement Likely,” which would initiate reviews every two years.

While these changes may seem minute to those living without a disability (HIV-related or otherwise), one of the most onerous barriers to overcome is constant reverification of one’s disability. Each review requires constant and consistent documentation to be kept and maintained, trips to and from offices, and long waits that place a strain on disabled people and on those living in poverty. Moreover, this kind of review process fails to take into account that most cases of disability are not static; they tend to be sporadic in nature, with flares, seasonal peaks, and can vary in length and severity (Cokley, 2020). This is particularly true of people living with chronic illnesses, such as HIV.

There have been times where my ability to work was severely limited by my HIV, even though I was virally suppressed. When I lived in Los Angeles, for whatever reason, I was prone to longer-than-average colds, flus, and bouts of gastrointestinal fireworks that would last for days (the latter of which continues, to this day). At the time, I was waiting tables and attempting to go to school, and instead, I would be laid up in bed, not making money, and unable to attend classes in person (though I attempted to attend class via Skype/web cam as often as possible). This is the reality of living with HIV, and although I have never applied for SSDI coverage, I probably should have.

Social Security
Photo Source: PDFfiller Blog

It isn’t just SSDI reverification that is burdensome; a change during the Obama Administration requires those of us who rely on the Ryan White Program and ADAP to submit documentation for reverification every six months, rather than once a year. Adding an additional review process is time consuming and, frankly, both exhausting, and unwarranted. The “savings” achieved by these reviews is largely outweighed by the amount of unnecessary administrative costs required to conduct these reviews and re-verifications.

As much as the President and his sycophants talk a good game about how much they’re doing for HIV in the U.S., the truth is that most of his proposals are almost certainly calculated to punish those already living with HIV while instead focusing on (still unfunded) efforts to reduce the number of new HIV transmissions. Worse, still, is that both his and his administration’s tendency to spring new rules and announcements on the country with virtually no notice makes planning for the future a near impossibility. The other common refrain I hear at almost every meeting is, “Hopefully, the next administration won’t be as chaotic.”

Hopefully, indeed.

  • Cokley, R. (2020, January 30). The next move in Trump administration's war on the disabled. Atlanta, GA: CNN: Opinion. Retrieved from:
Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.

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