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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.
I contacted Stonewall Democrats and referred this article to my Congressional Representatives. Did you? PLEASE do not remain silent.
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 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!
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.
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.
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.
jill k
My fiance has been denied twice with full blown AIDS which I guess means his cd4 count has been under 200 for over a year and a half. On top of the fact that he has wasting syndrome, herpetic infections, thrush, sinusitis, folliculitis etc., he also has PTSD, rage issues, generalized anxiety disorder, depression. And right now his memory and all over mental health are being compromised on a daily basis. Can somebody get back to me on how I can have Social Security help me get him on presumptuous payments, which is a program within SSA guidelines that states a person who is waiting on an answer will get the benefit payment plus medical benefits while awaiting due to the fact that SSA knowledge is or presumed to receive benefits. I need help for anyone that has knowledge on this issue please get back to me as soon as possible
February 17, 2016