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ART Promise is Gone For Older Aging HIV+
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Yes, a provocative statement- ART Promise is Gone - many us feel ART. HAART has failed us !!!!! Many feel & see severe declining health and are fearful and expect worsening and with low prospects.....
Sure one must keep taking HAART because if we stop viral replication will kill us soon. But the early days following 1996 protease ART full of hope & promise is gone for older aging HIV+ suffering the ravages of aging with HIV. In the USA 1.2 million have HIV, 50% are over 50 & 20% over 60, so 250,000 are over 60, and if 25% are suffering the ravages of aging with mental & physical disability that amounts to 60,00o people suffering with severe aging disability. Many feel hopeless & devastated and that TOO LITTLE is being done and too little discussion & attention is given to this life and death problem. Cure will not repair the damage of 30 years with HIV to our organ systems, even if there were a cure tomorrow, and we all know the prospects of a cure are dimming with research disappointments mounting. PrEP does nothing for the aging problem. Yet PrEP & Cure get much more discussion & attention than the aging problem. That’s why we feel abandoned. Why is there a no hue & cry, no outrage to do more about the aging problem, at least a Global & National Discussion to Recognize the problem. We are the first surviving & elderly generation with HIV, We are from the original group of activists who forced the federal government & the NIH to fund HIV and all the important work being done today, so we don’t deserve to be abandoned & not get the attention this problem urgently needs.
WHAT IS NEEDED:
1 - we need complete recognition & discussion of the problem & future implications
2 - we need better research - we need to find out why HIV is causing this problem & what we can do about it - we need leadership & transparent collaboration between National Institute of Aging (NIA), DAIDS, NIH, ACTG and global researchers and leadership including IAS, WHO etc-
3 - we need better care & support services for older aging HIV+ who need them & for their clinics & clinicians. Our HIV healthcare system is suffering the same squeeze as the overall healthcare system with increasingly shorter visit times with HIV care providers, less time for interaction between specialists & primary care doctors & the patients, longer wait times to see a specialist - it can take 4 monte to see a specialist with many of them not being well schooled on HIV specifics, recent study from Wash DC Cohort found 50% did to get evaluated or treated for comorbidities, 30% to 60% have depression or mental disability, 30% have physical disability.
Many of us older HIV+ who are suffering the ravages of HIV aging fee abandoned by federal HIV leadership, and fearful of what the future holds. At CROI it was said in the Life Expectancy plenary that we don’t know if death rates will go up by the session leaders, which is very disappointing to hear. This ATHENA cohort at Glasgow reports death rates will increase:
Multimorbidity and risk of death differs by gender in people living with HIV in the Netherlands - the ATHENA cohort study - (10/29/18)
Myself & many leading researchers say for sure death rates will go up and I say soon. Quality of life for many is horrible & beyond words. Many have ongoing persistent cognitive impairment & mental & physical disability. The time NOW calls us to admit we are in a serious situation.
Jules Levin
NATAP
www.natap.org
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