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Aging/HIV IGNORED....The aging survivors left behind by AIDS
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"long-term survivors like himself have been left adrift........"
Jules Levin, NATAP, www.natap.org
They are being IGNORED: "Some of these men fought in the AIDS battles of the 1980s and 1990s. They protested in San Francisco and in Washington, D.C., screaming for attention, for treatment, for resources and support." The brand of isolation felt by aging older HIV+ is not understood unless you are experiencing it !
Its NOT a pleasant story, its not good politics, in HIV good politics is PrEP & cure, not the Aging problem. ALL ignore the aging problem, and I am NOT referring to research to understand the science BUT I AM referring to the daily living issues aging patients are facing now & the services they need to live & try to live a better life. HIV causes premature & accelerated aging so patients are suffering the ravages of aging prematurely & in greater numbers, that is more diseases compared to HIV-negatives. Federal, city & state officials ignore the problem, researchers & advocacy essentially are ignoring this problem; when I say ignore I mean nothing is being dome to address the problem, little coffee clutches discussing our problems are useless. We need an infrastructure to provide the needed services. The "establishment" feels they did enough for us, they kept us alive, they gave us drugs, to that I say well what about the $1 Billion a year the federal government spends of US taxpayer money on the Ryan White Care Act, shouldn't some of this money go to the aging infrastructure needed, HELLO, isn't that in part why tax payer money goes to HIV in the USA, who decided that the money should ignore the services the aging population needed, certainly not these patients & certainly not the taxpayers. This was decided by the people who receive this money & NIH money, researchers, small & large AIDS Service Organizations who receive streams of funding who themselves decide where the money should go. As far as I am concerned this is a corrupt system, self-serving without adequate oversight! We need services which I detail just below & Aging-Geriatric Clinics imbedded within large HIV clinics throughout the US particularly in NY, LA, SF, and other large cities, I understand SF ahas such an outpatient clinic at the SF Gen Hosp, Ward 86.
"Last Man Standing: they had the luck to survive HIVand the brutal misfortune to live on" .....http://projects.sfchronicle.com/2016/living-with-aids/story/
"Doctors and scientists are beginning to understand that longtime exposure to HIV, even in those who seem to remain otherwise healthy, may cause premature aging and other disorders. More than a third of all people infected with HIV also have viral hepatitis, which can cause severe damage to the liver. The drugs themselves can harm the liver and kidneys too. Frailty and mobility difficulties, typically afflicting people older than those in their 50s and 60s, are common among AIDS survivors in that age group. They also have higher-than-expected rates of heart disease, diabetes and a host of other age-related disorders......study of older HIV-positive men released in 2015 found further evidence that these patients suffer signs of early aging. Nearly half were suffering cognitive impairment.....One in 4 had suffered a fall in the previous year - a sign of frailty......type of care that long-term survivors need is significantly shifting......Along with the physical pain and illness, the lingering grief and the anxiety, isolation is a particularly bitter side effect of survival....increased risk of depression, anxiety and other mental health problems.....Ralph was diagnosed with HIV-Associated Neurocognitive Disorder.......HAND can occur when HIV breaches the nervous system. Most people experience relatively mild cognitive symptoms that can impair memory, language and decision-making skills, but are still able to go about their daily lives. Ralph has a more severe form that causes dementia and is ultimately fatal. Before he dies, he will lose the ability to walk, to speak, to bathe or feed himself. His prognosis, doctors say, is five to seven more years."
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from Jules Levin, NATAP
The aging survivors left behind by AIDS
San Francisco Chronicle
March 3, 2016 Updated: March 4, 2016 2:25pm
http://www.sfchronicle.com/opinion/editorials/article/The-aging-survivors-left-behind-by-AIDS-6869567.php?t=009dccf15b&cmpid=email-premium
"men are now in their 60s, mostly alone and in need of help.....lonely, nearly forgotten generation who live isolated and frail....lost companions and loved ones who died.....aren't prepared, and neither is San Francisco, for the extra years.....Survivors are saddled with serious health problems that leave them weak and unable to work.....they made no long-term financial plans, leaving them vulnerable in an expensive city with scarce housing. Private disability plans are running out, pushing many into poverty"
from Jules: these problems are NOT the normal problems of aging everyone suffers, NO. It is no secret, there is a ton of research that HIV+ in general experience more comorbidities & they emerge at earlier ages than HIV-negatives, we call this premature & acceleratd aging ! these problems are the result of premature & accelerating aging. While researchers get grants to study the aging science older patients are presently suffering everyday & the NIH & local governments ignore the problem, and while most advocates refuse to recognize the problem, patients's suffering is getting worse. Many aged patients are frail, they can't walk, they can't get around, their daily chores are almost impossible for some to perform, they suffer housing & income problems, they suffer serious health issues including mental disabilities, declining cognitive & mental functioning, increasing forgetfulness, increasing heart disease, polypharmacy, increasing difficulties in adherence to their ART regimen, increasing kidney disease, excessive cancers vs the general population(reported at CROI-2016), increasing inability of daily functioning
this is not a problem only in SF but is a national problem present. In NYC, SF & LA it is more acute because the AIDS epidemic started earlier in these cities & tis the patient population is older and the older population is larger. It is disgraceful that city, state & federal governments have not even discussed or planned services for these patients, reading below near the end of this article back in 2010 a report to SF city government and a 2nd report 3 years later made recommendations, yet the problem remains unaddressed. I have tried to awaken federal & NYS officials repeatedly as well as advocates but nothing has been done. This patient population deserves attention & its a disgrace that this problem is ignored. I have spoken with White House officials, NIH & NIAID officials and nothing has moved except they heard what I said but no responses. The HIV community is obsessed with finding a cure and with PrEP, it is great we are working on these important issues but not to the point of ignoring a real life problem, the suffering & services needing to be addressed for the aging population, here are 2 reports on the services needed for the aging population & the issues they re facing right now, which will only get worse as the patients get older & more frail & the numbers of patients over 65 grow, it is expected that 50% of people in the USA with HIV will be over 60 years old in 2 years; health issues aging suffer for which we can & need to provide services to address depression; social isolation; increasing suicide & suicide ideation; inability to do daily activities and lack of mobility to perform daily activities including shopping, going to doctors; increased anxiety due to these problems; stigma; and of course the health causes, the comorbidities, leading to premature & accelerated aging: increased & premature frailty & cognitive impairment & gait difficulties, which contribute to increased falls & fractures. We need specialized Aging Clinics in healthcare facilities & training for healthcare providers & service providers should be trained to be front-line on these issues. The Ryan White Care Act should be addressing this need.
HIV & Aging: Psychosocial, mental health,
and behavioral issues/services/mental health
policy......http://www.natap.org/2015/HIV/070915_03.htm
At this 2016 CROI, here were a few select aging-related studies reported: ....higher risk of stroke in HIV+ vs HIV-negatives....http://www.natap.org/2016/CROI/croi_84.htm
CROI: STROKE INCIDENCE HIGHEST IN WOMEN AND BLACK HIV-INFECTED PARTICIPANTS IN ALLRT COHORT - (02/26/16)
CROI: Factors Associated with Limitations in Daily Activity Among Older HIV+ Adults - (02/29/16)
CROI: Frailty is associated with NNRTI-based Initial ART and Modifiable Risks in ACTG 5322 - (02/29/16)
CROI: First Look at Big 75-and-Older HIV Group--Diagnosed at Age 62.....much higher rates of comorbidities among older HIV+ - 40% with 2 or more, 14% with 4 or more comorbidities - (03/03/16)
CROI: Aging with HIV: Emerging importance of chronic comorbidities in patients over 75 - (02/29/16)
from the CDC - CROI: Trends in Comorbid Conditions Mentioned with HIV Disease on Death Certificates, United States, 2000-2010 ...Comorbidities' Deaths Sharply Increasing/Leaders Ignore Problem - (02/29/16)
CROI: Depression and Social Isolation Mediate Effect of HIV Stigma on Women's ART Adherence - (02/26/16)
CROI: Increasing Hypertension and Diabetes Rx for HIV+ Women, But Poor Control - (02/25/16)
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http://projects.sfchronicle.com/2016/living-with-aids/story/
A 2014 city report estimated that up to 1,200 people with HIV or AIDS have private disability insurance that will expire at retirement age. Helping them stay in their homes or find new ones would require as much as $19 million in rental subsidies from the city over the next five years. But at the moment, the city has no plan to allocate that money.
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San Francisco Chronicle
March 3, 2016 Updated: March 4, 2016 2:25pm
http://www.sfchronicle.com/opinion/editorials/article/The-aging-survivors-left-behind-by-AIDS-6869567.php?t=009dccf15b&cmpid=email-premium
San Francisco's daunting experience with the AIDS epidemic has produced remarkable results. After years of death and disease, medical breakthroughs dropped mortality rates and directed treatment in new ways. This city led the rest of the country - and world - in finding answers to a once-unstoppable plague.
But this success is producing a troubling effect that's nearly invisible: Hundreds of gay men, infected with the AIDS-causing virus, who expected to die are now living into advanced years. It's a lonely, nearly forgotten generation who live isolated and frail lives in a community that is just beginning to see their condition and needs.
It may be too soon to produce a list of specifics or budget to respond to the challenge. But it's time for serious study of the problem. A population who expected to die has instead lived on. These individuals defied early medical predictions that gave them only months left. But they aren't prepared, and neither is San Francisco, for the extra years.
This predicament is described in profiles of AIDS survivors by Chronicle reporter Erin Allday, who deftly humanizes their situations and stories in "Last Men Standing." Nearly all of them lost companions and loved ones who died from depleted immune systems and diseases that followed. The story details the survivors among the human wreckage. "We were pillars standing amidst the ruins," said one man who lost two partners.
If survival sounds like victory, think again. Survivors are saddled with serious health problems that leave them weak and unable to work. Careers were canceled or put on hold amid fears that disease would flare up. As friends have died, the world of the survivors has dimmed and slowed, sometimes leading to serious mental health problems that further immobilize them.
Because many didn't expect to live long, they made no long-term financial plans, leaving them vulnerable in an expensive city with scarce housing. Private disability plans are running out, pushing many into poverty. A city report two years ago estimated that 1,200 people with AIDS or HIV had disability plans that will end by their retirement years. In addition, therapy and counseling for this group is limited.
It's not entirely bleak. The city's AIDS-fighting machinery is changing gears to take on the issue of aging survivors, but this essential task has just begun. In 2010, a report analyzed health data and recommended the city study what an aging AIDS population needed. A second report three years later homed in on the issues in three Bay Area counties. Social isolation was on the list and, not surprisingly, so were living costs and housing.
As a result, the gay community is waking up to the issue, said Scott Wiener, the Board of Supervisors member who represents the Castro neighborhood, ground zero for the AIDS scourge. Though San Francisco may be ahead of other cities with large gay populations, he said, "we're definitely behind" the need when it comes to matching social services to a specialized group.
The war on AIDS has shifted dramatically since the condition was first spotted in the early 1980s. Some 20,000 lives were lost over the next decade in San Francisco alone. But then a series of steps - symptom-reducing drugs, antiretroviral medications and other discoveries that block transmission - have cut deeply into the problem. Education and quick treatment took aim at young populations, further reducing the spread of the deadly virus.
But a slice of the older world lived on, and those men are now in their 60s, mostly alone and in need of help. San Francisco must once again pursue an answer to the challenge of AIDS.
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