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Aging with HIV in U.S.
Trans NIH Research Themes
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Maureen M. Goodenow, Ph.D.
NIH Associate Director for AIDS Research
Director, NIH Office of AIDS Research
June 14, 2017
from Jules: Betrayal of Older Aging HIV+
The disgusting disregard for older aging patients plight is sinful. We spend $15 billion every year on domestic HIV but we cannot in real time carve out dollars to address aging/HIV needs, give me a break, this is corrupt & malevolence, it is betrayal of these older aging patients. The new OAR Director Maureen Goodenow presented this slide talk on Aging/HIV at congressional briefing June 14 as part of AmFar session on "Ending AIDS". Unfortunately we do not have the time to wait years, look at the slides below, she makes references to 3-5 years out, and a 2030 timeframe goal, she must be kidding. This is part of the picture of the politics of HIV. We do not have the time to wait, we need better research now - more patient focused to understand what older aging patients are actually experiencing in real life - AND - we need special services NOW for these suffering older patients & their clinicians. The research establishment & the researchers look to fund the lowest hanging fruit and the researchers themselves uselessly duplicate so much aging research. These HIV researchers need to be vocal spokespeople for what we need, NOT be part of a useless bureaucracy. We need research that looks for new medical interventions & seeks to understand the science NOW, new interventions that look at the underlying mechanisms of the frailty & inflammation patients are experiencing that is causing disability & serious sickness with multi-comorbidity & polypharmacy. Researchers in HIV cannot be silent as these patients get sick, death rates will increase, disability will increase; where will we house aging disabled HIV+ ? We have not even started that discussion. Instead researchers look to bring in research contracts for their hospital, to bring in revenue, so they only look to be part of the system, they are afraid or unwilling to speak out to support the real needs of aging patients. We need NOW dedicated funding for research and dedicated funding carved out NOW for special support services for patients & their clinicians. ON top of the multiple comorbidities & polypharmacy patients are experiencing isolation, emotionally homebound, physically homebound, depression, extreme & worsening stigma, worsening self esteem, post traumatic stress syndrome - yes everyone who has had HIV for 30 years has PTSS, its like they have been at war for 30 years fighting HIV & now THIS as they age - anyone would be depressed & isolate. All this is going on while the the OAR & HIV researchers fiddle. Rome is burning & the emperor is fiddling. I don't think advocates understand what is actually going on in the real lives of many older aging suffering patients, they hear a story or read a report like this from me or others, but unless you are experiencing this condition it is hard to understand. Or maybe they really don't care. 80% now with HIV in the USA who are diagnosed are over 45 Years Old, 50% over 50 & 25% over 55-60. The healthcare costs alone are not appreciated, HIV healthcare costs will triple for older aging patients due to comedications & additional care costs. What about in several years when a significant number of patients start needing old age home facilities because they are so disabled they must be institutionalized. Is this how we should treat them. BETRAYAL, that is what this is, we are good enough to put into their studies but not to conduct the RIGHT STUDIES. They all go where the money is - PrEP & Cure, the easy out, its politically expedient, the studies that bring funds in, advocates & federal officials have determined PrEP & Cure are what they will fund, NOT aging needs.
Its not just the NIH, industry too owes an obligation to take a firmer stand on this phenomena of aging & HIV, so do advocates & so do HIV researchers & clinicians. We need VOCAL LOUD STRONG SUPPORT & DEMANDS, everyone is very quiet on this.
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