Treatment News : Updated: Revise Social Security HIV Disability Requirements Says Institute of Medicine

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September 28, 2010

Updated: Revise Social Security HIV Disability Requirements Says Institute of Medicine

The following article, originally published September 21, has been revised to reflect clarifications from the lead author of the IOM report.

A new report issued by the Institute of Medicine (IOM) on September 13 says the criteria used by the U.S. Social Security Administration (SSA) to gauge HIV-related disability is outdated and should be overhauled to include new qualifications based on CD4 cell counts and specific sets of medical conditions. The IOM recommendations—requested by SSA—will only apply to new Social Security disability applicants once the existing criteria are amended; current disability claimants will not be effected by the proposed changes.

The IOM recommendations, which have yet to be officially reviewed by SSA, reflect the fact that modern-day antiretroviral (ARV) therapy can often improve the health of HIV-positive people with low CD4 counts or a history of AIDS-related opportunistic infections and, in turn, effectively reduce the need for disability benefits. The report also stresses the need for disability benefits for people living with HIV experiencing certain non-AIDS-related complications and ARV treatment-related side effects that can lead to disability.

The HIV Infection Listings, established in 1993, are the criteria currently used to determine whether people living with HIV are disabled by their infection and eligible for benefits. For example, a person living with HIV and a history of employment may be eligible for Social Security Disability Insurance (SSDI)—and, with it, access to Medicare—once a serious AIDS-defining illness has been diangosed, such as Mycobacterium avium complex or cytomegalovirus. Other benefits, including Social Security Income (SSI) and Medicaid for people living with HIV who have limited employment histories, are also dependent on disability status as determined by SSA.

Since the Listings were created, the IOM report argues, HIV care has advanced and the disease has dramatically changed from a uniformly fatal condition to a potentially chronic manageable infection, in which CD4 cell recovery and a return to physical health—and ability to work—is an expected positive consequence of contemporary ARV treatment.  Conversely, a number of non-AIDS-related health complications are becoming increasingly prevalent among people living with HIV receiving ARV therapy—such as neurocognitive impairment, chronic kidney disease, osteoporosis and a number of treatment-associated side effects—many of which can cause disability and were not included in the original 1993 HIV Infection Listings.

To account for the more recent reality that opportunistic infections can be cured or prevented by ARV treatment and prophylaxis, the potential health consequences of ARV therapy and the increasing prevalence of conditions that can occur jointly with HIV infection, IOM is now recommending to SSA that people living with HIV meet one of the following criteria to qualify for disability benefits:

In short, the IOM committee recommends that SSA move away from a list of less common AIDS-defining opportunistic infections and focus on manifestations and disease states that are more likely to be associated with disability today.

In addition to IOM’s disability-defining criteria recommendations, it also stresses the importance of mandated, regular reassessments of a person’s disability status by the SSA. “Since antiretroviral treatment often allows clinical improvement over a period of one or two years,” the IOM report suggests, “the committee believes claimants allowed under such a listing should be reevaluated periodically for disability status. The committee believes three years would allow for a sustained response and is the maximum practical period for Social Security Administration (SSA) reassessment.”

For example, in a person living with HIV deemed disabled because of a CD4 count below 50 cells, “if the claimant’s CD4 count exceeds the minimum threshold and the claimant is not disabled according to other sublistings [after three years], he should no longer receive disability benefits. However, in the event that the CD4 count drops below 50 cells, his disability benefits should be reinstated.”

Only those diagnosed with fatal or severe HIV-associated conditions (see the second bullet point above) will be granted permanent, "compassionate" disability status and will not be required to undergo medical reassessments.

IOM notes that the proposed revisions to the Listings affect new HIV-positive SSDI and SSI applicants only and are not to be applied retroactively. "The protection of those with existing disability is a solid part of SSA," says Paul Volberding, professor of medicine at the University of California, San Francisco, and a lead author of the IOM report. "SSA was clear that revisions are not allowed to withdraw  existing benefits." 

Aware that some community activists are concerned about the possiblity of medical reassessments for those currently receiving SSA benefits, along with the suggestion that revisions for new claimants will create a two-tier system for disability beneficiaries, Volberding urges participation in the SSA review, which will likely involving a public comment period. "Community advocates should be engaged in this process, as the IOM recommendations are only the start of a discussion, not the end by any means," he says.

Another concern among some community activists is that the the IOM report only addresses changes to SSDI and SSI qualification requirements—the committee sidesteps the important issue of access to care that, for thousands of people living with HIV, is tied to SSA disability status. At present, people living with HIV who are uninsured can access Medicare or Medicaid, once they have been deemed disabled by SSA. While the new recommendations may make it easier for some people living with HIV to qualify for these public health insurance programs, it is possible that the absence of list of serious opportunistic infections—some of which can occur at CD4 counts above 50—will hinder the ability of others to access health care when they need it. 

"Although the issues of … access to care [is] critical in the discussion of Social Security disability benefits," the IOM report authors write, "in-depth discussion of the means by which people receive treatment and medications was deemed outside the Committee’s scope." SSA, in turn, will be left to grapple with the issue of how to retain people in care and on ARV treatment if the criteria for disability benefits are changed, a task that will likely be made much more difficult in light of existing AIDS Drug Assistance Program (ADAP) waiting lists for uninsured or under-insured people living with HIV and other changes stemming from the recent passage of health care reform legislation. 

"We completely appreciate the linkage of disability to care access," says Volberding. "Now, one has to get an OI for easy access. The revisions we suggest would allow the many who are diagnosed with advanced stage disease but without an OI to gain access. The suggested changes would allow compassionate disability for those with still terrible complications  and would clarify the relationship between HIV Listings and the existing ones for problems now appreciated as HIV related like cardiovascular disease. 

"The whole combination of disability benefits with Ryan White and ADAP is a completely appropriate area for a community dialog," he adds, "but trying to ignore the difference between AIDS in 1993 and the situation today seems hard to hold too seriously."

Search: SSDI, SSA, social security, disability, Institute of Medicine, CD4 count

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  comments 16 - 30 (of 96 total)     << < previous next > >>

d. miller, gainesville, 2010-10-27 16:20:31
i have been denied twice in the past year and do not expect to live another 18 months to see another denial

John C, Palm Springs, 2010-10-22 13:21:23
Isn't the whole point of ssi/d is to help the sick and provide medical care so u can live with dignity and health care? Why should u have to be near dead to qualify? Changing the req. would be fatal to many. U can have all the med.professionals weight in but until they are living with t-cells at 50 they have no idea! Perhaps adding non medical issues like caring 4 your partner who died and seeing what lies ahead for u should be as important as an OI! This is only cost cutting measure SHAME ON U!

sickofBS, BOSTON, MA, 2010-10-22 13:00:41
To akers (from poland?) you need to contact good SSDI attorneys. Binder and Binder got me through on my 3rd appeal when I was trying to be railroaded by Unum's Genex services who try to find reasons you can work and steer you toward mental illness claims they do not pay. Binder is the one anyone who is getting BS from SSDI needs--not an ad--a fact-do not delete this comment as it will save lives. I have had this 27 years and worked all those years, nobody should be revising this until meds cure.

TiredofBS, Boston, MA, 2010-10-22 12:50:32
Leslie Kline Capelle- can U write an articl on this?.The lack of a cohesive overwhelming response from the community (straight and gay( is frightening! Miss Project Inform;s Martin Delaney when BS like this hits. A disgusting plan to make a terrible situation worse. 27 yrs. poz and a "honeymoon" on new meds pops you 500-800 T cells- they come back down. 200 ts is bad enough- 50 is insane!. I long for the voice of PI's Martin Delaney yes Larry Kramer speaks truth but Marty could effect change.

TiredofBS, , 2010-10-22 12:28:36
To make 50 T cells the new bar is draconian. So basically you have to be planning your own funeral to get SSDI now-with 18 month waiting period you are dead b4 1st check? Long for the ACT UP crowd. Nobody would choose to go LTD/SSDI and leave their job for THIS. We are isolated enough without being chastised for doing the very thing we need to to stay healthy enough to have any life. Left 6 figure salary to save my life to be stigmatized. BTW, not all POZ people are gay.Talk about no support!

The Poverty Trap, Houston, 2010-10-21 17:12:36
A job is the only thing that kept me alive whtn I found out my CD4 was under 100. My friends said get on SSDI and work "Under the Table". What a solution, becoming a double burdon on society. Chosing SSDI is accepting a life of poverty. If that suits you take it and live with it. I see so many people jump through hoops for free services. Leave the SSDI for the folks that are really disabled, get off your but, get a job, increase your self dignity and leave SSDI for those that need it.

Frederick Wright, Tampa, 2010-10-20 11:09:22
With any systems like SSD their is a lot of funds that people do need. The System is just not for HIV folks but many, and many need it. So in that case the people that exploit it or be come HIV to get SSD or Doctors that over bill Medicare their have to be some kind of accountablity. The systems are weak and low on funds and if we keep sending money out in a government, we will be like the Greeks and have no money for any SSD folks. We need Jobs for HIV folks and Universial health care.

Juan Nunez, Lowell, MA, 2010-10-20 07:44:00
Good day, I would have to say that I agree with these changes. Ihave been HIV poz, since Feb. 19 2004, and I have yet to be disabled due to my HIV. Yes there was a point where my CD4 was well under the 50 per ML of blood oun as an AID Dx patient, but I was placed on ARV's and was brought back up again to normal and continued with my life. Today I have been off meds for 4 years, and yes my CD4 is low, but due to cuts and other issues, I am unincured. Can not afford he meds. WHt abou us, like me?

Kevin, Independence, MO, 2010-10-20 03:42:23
After fighting with SSA for 4.5 years to get my benefits back, they want me to go through a re-eval in 3 yrs. I doubt I'll be any better, and at 49 yrs old now, I can only see my body deteriorating further, despite a high CD4 count. CD4 doesn't tell the whole story for long-term survivors. I've been POZ for 23 yrs, lost two husbands, have depression and grief issues, and back problems, but my high CD4 count will probably cost me my benefits and my medical care.

QueerPete, Los Angeles, 2010-10-18 17:58:01
26 YRS Today, a Dr. Told me I had abt 18Mnts to Live, AS OF 2DY ALL WHOM I KNEW IS DEAD, Aftr94' IS NOW DYING ALONE. (2PplLastWk) NOW WISHG THAT SCARED YOUNG DR. WAS RIGHT BCK THN. I'm dealg w/2Many Illnesses, I as well as those who "ARE" Sick,Alone, & Tired of ths Sht! DEMAND AN AIDS CURE PROJECT. W. Bush got away w/ TREASON But we R the 1's whoR pay 4It. I'm Afraid we will C The GayTimeOfThe80'sAGAIN, When Gay Singles&Couples jumpOFF of Towr housing Buildings.Bridges U R ALL RGHT N UR RSPNSES

TonyC, NYC, 2010-10-14 23:13:12
USA does allot of good but when it comes to it's citizens, it's slow on the uptake. Why is it that the French are given paid long vacations every year,in almost every job? and that mindset is kept almost throughout Europe.They think WE are NUTZ working like we do.Over 2 decades ago, after being diagnosed, I knew innately that stress would kill me..and went the dis route. I 've survived all of my friends & that is just one of the reasons.this is a setup for a dangerous scenario for the country

Serrot, Dallas, 2010-10-13 13:08:07
We gay men where infected with this deadly virus by our own government, thinking they can get rid of us. Genocidal Chemical Biological Warfare! We are considered the "TERRORIST" of this "Christian Nation" & their fear of a "Gay Agenda" taking over, too much for this government to bare. throw us a bone with drugs, keep the economy going, shut us up. I'm a Navy veteran battling 25 years AIDS/HIV 53 now & want to go back to work, but there are those of us who need this service badly! ACT UP!

Sam, , 2010-10-13 00:54:43
Just over 2 yrs after starting the MEDS, I developed BI LATERAL AVASCULAR NICROSIS of my HIPS. Total Hip replacements DO NOT last because the meds cause Bone Damage. 2 Surgeries later, my Hip replacement has FAILED. I am in HELL, this condition is PAINFULL & CRIPPLING ! It ended my Career and any Personal life. The information about the MEDS / Life expectancy is a LIE ! My Viral load is Undetectable, but I'd rather be DEAD. Now they want to take away Soc. Sec. Benifits to POZ people. IT'S A JOKE

PHIL, phoenix, 2010-10-11 21:52:33
For what I understand it will not be retroactive but me having Hep c and Neuropothy I would quailfy for it anyway and being a Amputee but that does not comfort me in the least this virus we call hiv that many of us share know that know the real truth we r not living high on the hog some of us just r barely living all i know is this if i am wrong and it is retroactive for many people it will mean being homeless sick too commiting suicide and destroying more families that have not been already

michael, Boston, 2010-10-08 22:42:54
Wow, I just read all comments. It just reinforces my belief that America doesn't deserve Universal Health Care. We're just too stupid to ever get it. The only thing most seem to worry about is someone "lower" than them might be getting something for nothing. Ignoring the fact that 2% have like 95% of the wealth. Therefore, we don't deserve socialism either. I know it's tough love, but what this country needs is a Great Depression. After the Tea Party wins, I'm quite sure we'll get it.

comments 16 - 30 (of 96 total)     << < previous next > >>

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