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Social Security Disability: Will Recommended Qualification Changes Help or Hinder Access to Services?

| 11 Comments
Not too long ago, HIV was considered to be a distressingly predictable disease. In almost all people infected with the virus, it was only a matter of time before the CD4 cell count dropped to a dangerously low level and opportunistic infections and cancers reared their life-threatening (and, indeed, life-ending) head. While the use of HIV drugs like Retrovir--best known as AZT in the late 1980s and early 1990s--could slow this process, rarely was primitive antiretroviral therapy able to restore health for any significant length of time. 

Today's powerful antiretroviral (ARV) treatment regimens have virtually rewritten HIV's insidious script. No longer is the disease a one-way street. Even those who don't find out they're positive for the virus and enter care until their CD4 cells are in the double digits and/or hospitalized for an opportunistic infection (OI) can experience a return to immunologic and physical health. In turn, AIDS as we've long known it--defined since 1993 as a CD4 count of 200 below or the development of an OI--is no longer an inevitable and progressive stage of HIV disease, but a seemingly avoidable and reversible condition.

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People living with HIV and their health care providers known this, but so do administrators who oversee public programs intended to provide safety nets to those who become disabled and can no longer fully support themselves due to disease. The Social Security Administration (SSA) has been providing disability benefits--Social Security Disability Income (SSDI) and Supplemental Security Income (SSI)--to people living with HIV for decades, using early-year knowledge of the disease to determine who qualifies for assistance and who doesn't. But as times and circumstances have changed, SSA is eager to overhaul its disability benefits criteria to reflect today's reality.

In 2009, SSA asked the National Academy of Science's Institute of Medicine (IOM) to establish the Committee on Social Security HIV Disability Criteria--made up of experts in the field of HIV care, including leading clinicians and community advocates--to recommend updates to the agency's disability benefits criteria for people living with HIV. IOM's report was released in draft form on September 13 and is on its way to SSA for review (see my initial AIDSmeds report here). 

Not everyone who has seen the report is thrilled with its recommendations, however. Though it is now clear that the IOM recommendations are only intended for new SSA disability applicants--the agency made it clear to the IOM committee, when it commissioned the report, that it was not interested in revoking disability status of those living with HIV who currently receive SSDI or SSI; a move to the contrary could have potentially thrown the lives of thousands of people living with HIV into an economic tailspin--there are concerns about how these new criteria will affect new applicants who might come to depend on disability status, not only for income, but also health care and other supportive services. 

Current Qualifications

SSA currently pays disability benefits through SSDI and SSI. Once disability benefits have been granted by SSA, other benefits are possible. For example, those who qualify for SSDI--individuals with a recent employment history and have paid into the Social Security income tax pool--are also deemed eligible for Medicare. An SSI determination, given to HIV-positive individuals with spotty recent employment histories and limited liquid assets, allows for Medicaid access. And both determinations can open the door to supportive care programs, such as housing assistance and food stamps.  

To qualify, individuals must meet SSA's definition of disability, which differs for adults and children. For adults, disability is defined as "an inability to engage in any 'substantial gainful activity'"--a level of work activity and earnings, as determined by SSA--"by reason of any medically determinable physical or mental impairment(s) which can be expected to result in death or which has lasted or can be expected to last for a continuous period of not less than 12 months."

To save time and resources, and to both ease and streamline the administrative process of determining the functional capacity of each claimant, SSA adopted a list of serious medical conditions--the HIV infection listing of impairments (the Listing)--which are applied at the third step of a five-step review process conducted by the SSA in reviewing disability applications.

The Listing currently requires a diagnosis of an AIDS-related opportunistic infection or cancer. The list of allowable medical conditions for HIV-positive adults is, indeed, long and includes a variety of once-common bacterial, fungal, protozoan or helminthic, and viral infections; sepsis; meningitis; pneumonia; septic arthritis; endocarditis; and sinusitis. 

A frequent misperception is that a CD4 cell count below 200--a defining characteristic of AIDS--automatically qualifies individuals for SSDI or SSI. While this may have been true in earlier years, it is no longer the case. According to SSA, [A] CD4 count below 200 [offers] supportive evidence when there are clinical findings, but not a definitive diagnosis of an opportunistic infection(s). However, a reduced CD4 count alone does not document the severity or functional consequences of HIV infection."

Of course, it's much more complicated than this. For example, some common manifestations among people living with HIV--such as neuropathy, neurocognitive problems and depression--aren't including in the Listing, they are included in other disability-qualifying listings maintained by SSA. 

What's more, SSDI and SSI determinations are a matter of administrative law--and legal interpretation of the law--as much as they are about medical opinion. While a health care provider's written testimony in support of an SSDI/SSI claimant's application may fall short of proving that a specific diagnosis clearly meets an SSA listing, it tends to be legal representatives and administrative law judges (ALJs) who ultimately determine whether or not characteristics of the applicant's health equals an SSA listing. Even if an impairment doesn't clearly meet or equal an established SSA disability criterion, ALJs and an applicant's legal representative may still come to agree that it restricts employment and, thus, is an SSA-covered disability. A complex process, to be sure.       

Still, things have changed considerably since the Listing was put into place in 1993. According to the IOM report: 

New drugs and the concept of drug combinations evolved dramatically after 1996. HIV infection is now considered a chronic condition which, in optimal settings, allows high levels of functioning and prolonged survival. Combinations of antiretroviral drugs suppress HIV replication, enabling a recovery of immune function as reflected in circulating CD4+ [cells] normal or near-normal levels in most persons. Success in treatment, however, is far from universal. Many HIV-infected persons harbor virus already resistant to one or more antiretroviral drugs, limiting CD4 recovery. Others are diagnosed at very advanced disease stages or at an older age, both predictors of poor response to treatment. Many others find the lifelong requirement for consistently excellent medication adherence to be impossible or are suffering from the side effects of current or previous antiretroviral therapy. Today, although many of the opportunistic diseases once common are now uncommon, they are still seen. Many patients respond well to treatment, but others, even in the era of potent HIV medications, fail to achieve control of HIV replication or are diagnosed in extremely late disease stages and have rapid progression or disabling complications. For all these reasons, the HIV Infection Listings are in urgent need of reconsideration and revision.

In turn, the SSA commissioned IOM to examine the current listings for HIV infection and to suggest how they might be updated, considering the substantial changes in the disease since the introduction of potent combinations of antiretroviral drugs beginning in 1996. It is important to note, however, that SSA has updated its Listings on a few occasions since 1993 to reflect improvements in HIV care, albeit in collaboration with SSDI/SSI experts, not a committee of medical experts potentially view disability differently than legal experts.  

What's Proposed

IOM's recommendations involve doing away with the current HIV Listing and replacing it with our groupings of health complications associated with disability in people living with HIV. A diagnosis of one disabling condition in one group will be needed to qualify, according to the IOM committee report. 

Low CD4 Count

Although disability allowances in the 1993 Listings were based primarily on a diagnosis of an AIDS-related opportunistic infection or malignancy, the IOM report brings a qualifying CD4 count into the picture. Based on data reviewed by the committee members, an important indicator of disability today is a low CD4 count, specifically at or below 50 cells. This, the committee members feel, is a direct marker of HIV disease stage and a predictor of short-term mortality risk as well as of attenuated antiretroviral therapy response. 

Many of the most serious opportunistic diseases in the 1993 Listings occur in individuals with low CD4 cell counts and thus would be captured by the recommended Listing, the committee members contend. 

However, the report authors recommend that this allowance should be reviewed periodically--3 years would be most practical--to assess the magnitude and stability of the individual's response to antiretroviral treatment.

Imminently Fatal or Serious Conditions

By contrast, the IOM committee members ound several HIV-induced diseases that remain so serious that they warrant a permanent disability allowance. These diseases are severely disabling, have a high short-term mortality risk, and respond minimally to conventional treatment.

Diseases to be considered imminently fatal include:

  • HIV-associated dementia 
  • Multicentric Castleman's disease
  • Pulmonary Kaposi's sarcoma
  • Primary central nervous system lymphomas
  • Primary effusion lymphoma
  • Progressive multifocal leukoencephalopathy (PML)

HIV-Associated Conditions Without Listings Elsewhere in Other Body Systems

Disability allowance is also recommended for another group of conditions associated with HIV infection or side effects of treatment To qualify, however, applicants will need to prove that these conditions limit their bility to function in the workplace. 

Because recovery from these may be possible with antiretroviral therapy, the IOM report authors recommend that disability should, as with low CD4 counts, be considered a disability for three years and be reviewed regularly.

This list would include, but would not be limited to:

  • Diarrhea
  • Distal sensory polyneuropathy
  • HIV-associated neurocognitive disorders
  • HIV-associated wasting syndrome;
  • Kaposi's sarcoma
  • Lipoatrophy or lipohypertrophy
  • Osteoporosis
HIV-Associated Diseases With Existing Listings Elsewhere

Many people living with HIV experience a higher rate or earlier onset of diseases that are grounds for disability claims using various non-HIV SSA listings. In turn, the report authors stress the importance of cross-referencing with medical eligibility listings--and there are several--not specific to people living with HIV when reviewing applications for HIV-positive people seeking benefits.

A potentially confusing application process, yes, but the IOM report also suggests an internal review of SSA procedures to reduce the risk of HIV-positive people dealing with non-HIV-related health complications from falling through the cracks. Specifically, the IOM report recommends an ongoing review of the forms employed to best capture the information needed for allowance determination, and rewriting all introductory material for those most directly involved in the determination process. 

Examples include: 

  • Cardiovascular disease
  • Chronic kidney disease, including HIV-associated nephropathy 
  • Diabetes
  • Hepatitis
  • Malignancies, not otherwise specified in the report
Potential Problems

Because qualifying for SSDI or SSI is required for people living with HIV to access Medicare or Medicaid, respectively, some community advocates are concerned that a huge swath of future HIV-positive people will face tremendous hurdles getting the care they need, if SSA overhauls its HIV Infection Listing based on the IOM recommendations. 

Presently, Medicaid covers approximately one-third of people living with HIV/AIDS, while Medicare covers another third of those infected with the virus.

For HIV-positive people who are uninsured and do not qualify for SSI or SSDI (or do qualify for SSDI but haven't fulfilled the two-year waiting period for Medicare to kick in), AIDS Drug Assistance Programs have helped fill the void. Yet many state ADAP programs have either reduced their level of support or have implemented waiting lists. Thus, it's uncertain if ADAPs will be in a position to provide for those who are sick--someone who is diagnosed with HIV at the same time as an opportunistic infection, with a CD4 count above 50 cells, for example--if current economic conditions continue and SSA adopts the recommended changes. 

The Patient Protection and Affordable Care Act, passed by Congress and signed into law by the President in March 2010, should, for all intents and purposes, create a much broader range of health care options for people living with HIV, regardless of disability status or income.  Unfortunately, community critics contend, health care reform--which should go into full effect in 2014--is by no means a sure thing, with states and members of Congress fighting its implementation through lawsuits and threats of withholding funds.

It is unfortunate that the IOM authors consciously opted not to discuss how changes to the SSA Listings could potentially affect access to care, given the uncertainties currently facing people living with HIV.  "Although the issues of ... access to care [is] critical in the discussion of Social Security disability benefits," the IOM report states, "in-depth discussion of the means by which people receive treatment and medications was deemed outside the Committee's scope."

In effect, another shifting variable has been thrown into the mix of uncertainties involving the future of health care in the United States for people living with HIV--what we know about access to care through ADAP, health care reform legislation and SSA disability status is going to get very fuzzy. 

Still, it makes little sense for SSA to hold on to a seriously outdated list of medical qualifications for disability benefits because our health care system continues to fail in so many other respects. The question is, what will be the net effect of these various changes in terms of access to services for people living with HIV? After all, with so much talk about maximizing HIV testing outreach and getting everyone found to be positive in to care as quickly as possible, there's no room for widening gaps in U.S. health care. 

The SSA review process is just beginning and it is unlikely that the agency will take action until 2012. There will be a public comment period--AIDSmeds and POZ will alert readers when the time comes--and plenty of discussion between activists and agency officials in the meantime. The future story of SSDI and SSI for people living with HIV has yet to be written. 

11 Comments

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Comments on Tim Horn's blog entry "Social Security Disability: Will Recommended Qualification Changes Help or Hinder Access to Services?"

Newer meds, both antivirals and those to treat OIs, have changed the face of AIDS for those who have access to them. It seems as if the proposed changes will affect those without these resources, making them ineligible for SSDI/SSI until they are seriously ill. The 1980s all over again.

One of the reasons the current guidelines were implemented was it is less expensive overall to put someone on SSDI/SSI & Medicare/Medicaid before the person became seriously ill. That may no longer be true, especially if many who qualify under the new guidelines are too ill to recover and fortuitously die within a short time... thus saving tax dollars for more important needs like the DOD budget.

While I believe the impact of HIV/AIDS on those infected is less severe now, I'm concerned about those new applicants who receive SSDI/SSI. For example, Someone experiences TCells below 50 and cardiovascular disease which deems a SSDI approval. Then, over the next three years the individual's TCells consistently are at 500 and the heart troubles are managed. Three years have gone by and now he/she must explain the three year gap in their resume and possibly return to work at a lower pay salary then what SSDI/LTD paid. It seems to me that the SSA must also work with the Long Term Disability companies to ensure those being forced back to work are rehabilitated back into the work force at an income similar to their SSDI and Long term disability benefits.

How do we know that after a couple of years of the new guidelines SSA will retract its committment to not force SSDI recipients who were already receiving disability benefits prior to these new changes. Think about it. Those SSDI people grandfathered and not held to the new guidelines might experience a five year period of high t-cells and no sickness. I find it difficult to believe our government will not try to justify their reasons and disconinue their benefits. I've been on SSDI and Lont Term Disability for over 7 years and I fear I'll be forced to work and I'll not be able to sustain myself financially. If I were to return to work I would be forced to take a job making so much less then what I receive from SSDI and LTD. I live in fear my disability income will be discontinued. Sincerely!

I have been on SSDI for over 10 years. Recently, it seems some people in the gay community have become very vindictive and presumptuous and are accusing those of us on LTD of "abusing the system" and "riding the AIDS gravy train". I have personally been threatened by some simply because I can occasionally muster the energy, load up on anti-diarrhea medicine, and scrape up some money to go out with a few friends to a bar (less than once a month, is that a crime?). Someone even called my apartment manager (I live in subsidized housing) trying to get me kicked out of my apartment. And this is other gay people! What if I am told I must go back to work. I have friends who were just recently laid off and they can't find a job, how am I supposed to explain the long absence from work? How would I ever support myself, how would I get my medicines that are keeping me alive?

People with HIV/AIDS need to take a good hard look at the staffing of our existing HIV/AIDS organizations. How many positions are available that create careers within the earned income caps on SSDI? How many disabled people with AIDS are working full time in our very own organizations? This is the canary in the coal mine about what our prospects might look like if we lose SSDI.

BTW - AIDS Housing Alliance/SF is founded and run by disabled people with HIV/AIDS. We specializing in creating careers for people in SSDI. We offer the broadest range of housing services in SF for people with HIV/AIDS and have remarkable outcomes. We are proving that disabled people with AIDS can do it, and we do it better and with a more efficient use of resources.

Aids is not a managable disease only if you take your meds. If you do not have meds you will die soon very much sooner than you might think.

This news is very disturbing, particularly since most health agencies have concluded the costs associated with treating the ever increasing HIV+ population with these "life-saving" drugs is not economically viable over the next ten years.

The costs associated with "life-long" treatment will bankrupt the insurance industry and deplete the funds of federal/state/county programs.

On a global scale, the inability to manage this disease with the long-term use of ARVs is documented to be failing. No country can continue to provide the growing HIV population medications which continually increase in cost, and result in uncontainable viral resistance.

Further, these drugs are known to cause serious, and irreversible side-effects to patients when used long-term.

Multiple strains of drug resistant HIV are circulating within the population making treatment more complex and "management" of the disease difficult at best.

Drug companies consider the success achieved to date with existing drugs not to warrant further drug development. Several promising drug treatments have been shelved, funding discontinued. The demands made by investors do not permit private corporations to risk profits developing a drug to treat a disease considered "manageable".

The IOM authors should review the current conclusions advanced by most leading health professionals which indicate without a cure, the deaths associated with HIV/AIDS is going to explode over the next ten years. Millions world-wide stand to loose their lives due to the narrow perspective of disease "manageability" adopted by the IOM and other policy makers.

ARVs have provided a nice break from the grim reality associated with this disease seen in the early years of AIDS. But they have by no means provided a cure, or an economically viable means to care for the majority of those infected.

As a previous comment rightfully indicated, these modifications are leading the disabled/impaired HIV+ population away from what little security was provided through SSDI, private LTD, Medicare, Medicaid, assisted housing, and numerous other essential programs.

Lastly, the guidelines fail to consider the possibility of other OIs which may arise not previously observed in the immune compromised HIV+ population. Those initially infected with HIV and subsequently died from complications arising from AIDS represented a relatively small population in comparison to the HIV+ population of present.

If anything, the criteria for determining a disability status due to HIV infection should be expanded to allow the medical community access to these persons and hopefully slow the spread of this disease until a cure is achieved.

Speak up, silence still equals death.

Even with access to medication, a patient must adhere to the daily dosing regimen at least 95% of the time to prevent the development of drug-resistant virus. This means missing only one dose a month.

For most patients, this is not a realistic expectation. Especially when we consider the current "thought" is for patients to take these medications for the rest of their lives.

Speak up, silence still equals death.

I was diagnosed in 1986 with HIV. I worked until the Summer of 1995 when I was diagnosed with Hepatitis B and AIDS in the hospital and no immune system left. My death was expected to happen in a matter of months by the doctors.

ARV comes along and I made it!... Not so fast, due to the ARV therapy I now have Chronic Kidney Disease Stage 3. And I did not clear the Hepatitis B, so I have Chronic Hepatitis B. Even on ARV I have seen my CD4's go up and back down under any stress or anxiety. I also get bronchitis recurring constantly. I almost forgot that ARV has caused Osteopenia... the first stage of Osteoporosis.

I was a teenage kid when I was infected with HIV. I made it to 44, and now SSA, et al. wants to rip away what life I have to save the economy. If they want us dead, a gulag or firing squad would be more cost effective!

I have been on ARV since 1996. My cell count is up, but just this past year I have been in the hospital 3 times. Once for Tachycardia, and the worst was for Sepsis and Pyelonephritis. I had a fever of 106.0 and came close to death. After 2 weeks in the hospital, I had 10 days of IV infusion antibiotic treatment at my doctor's office. SO, EVEN ON ARV ONE CAN STILL GET SICK WITH DANGEROUS OI'S. MY HEALTH HISTORY IS PROOF OF THAT. I GET RECURRING BRONCHITIS YET I AM ON ARV. Now I am dealing with the side effects of long term ARV, i.e. Chronic Kidney Disease stage 3, Osteopenia diagnosed from last bone scan, that is the beginning of Osteoporosis. This issue is not "one size fits all" there are too many complications that can and will happen with ARV. This is a VERY complex problem that needs extreme critcal thinking and consideration. It is not black and white... too many fuzzy, gray details for all of us to deal with. WE MUST SPEAK UP TO SAVE OUR LIVES! I miss the old days of strong activists in our community. AIDS IS NOT OVER! Social Security changes causing us to lose access to health care is a death sentence. Look at how many healthy people are unable to get insurance for many socio-economic reasons. I know the Right-Wing does not care about anyone that does not fit into their ideology and their perceived 'theocracy'. But they should not have the right to kill us by denying access to health care. "Tea, anyone?" We cannot rely on ADAP or hope that we might get medical coverage, if we can find a job and maintain it. Please contact your Congressional Representatives and tell them not to take health care away, or we face ARV resistance and loss of lives! Please speak up!

I contacted Stonewall Democrats and referred this article to my Congressional Representatives. Did you? PLEASE do not remain silent.

Nothing about updating the HIV Listing is meant to help people with HIV/AIDS, but only to hurt them - period. The medical "professionals" who served on the IOM were clearly given instructions to create a new Listing that only approved disability claims by those with HIV/AIDS who were on death's doorstep. Meanwhile, they callously disregarded the fact that successful treatment of HIV/AIDS is 100% dependent upon extremely expensive pharmaceuticals, which is an uncommon characteristic among most disabling conditions contemplated under the regulations. To think that those with depression can rather easily qualify for benefits compared to the proposed, revised Listing for HIV/AIDS, is an atrocity. The IOM's suggestion that someone have a CD4+ count of 50 in order to receive temporary aid is astounding. Even though a disabled individual on Title II-only must be disabled for 2 full years in order to qualify for Medicare, thus punishing them for working while they were able to do so, the IOM suggests a 3-year review be done even for those with a CD4+ count of 50 or below, a review which SSA recently had not done for nearly anyone on disability due to staffing shortage. That means that someone might get drugs for up to 1 year before being cut off and kicked to the gutter to die! The same, unethical physicians who vote for maintaining the private health insurance scam in this country and the growing gap of uninsured Americans is responsible for this unfathomable attack on HIV/AIDS patients. They must be stopped.

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This page contains a single entry by Tim Horn published on September 30, 2010 12:43 PM.

New Jersey ADAP: No Longer a Shore Thing was the previous entry in this blog.

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