Re: NATAP/IAC: Aging/Comorbidities Report/"The Silent Majority":aging older HIV+ ignored #aging

Theo Smart

I think Liz was saying just that… that we should work with the HIV-negative comorbodity groups who are having the same issues that we are seeing earlier, despite well controlled HIV.

On Aug 16, 2018, at 10:40 AM, Jules Levin via Groups.Io <julev@...> wrote:

Not true, despite suppressed viremia and good cd4 heart disease and kidney disease are much greater in aging HIV+

On Aug 15, 2018, at 7:17 PM, Liz Highleyman <liz@...> wrote:

Or maybe work more extensively with HIV-negative groups facing cancer, cardiovascular disease, cognitive decline, diabetes, etc. That gives a much bigger population and much more leverage for pressuring pharma, researchers, and funders. For those with well-controlled HIV, most of the issues will be similar, though they may occur earlier.


On 8/15/18 3:45 PM, Theo Smart via Groups.Io wrote:
I agree with Jules that we have to launch a movement in the US (North America?) to better address the more complex health needs of the HIV+50+. 

Other than perhaps than addressing high blood pressure and (some) docs prescribing statins, most of the clinic-based care that people receive— especially those of us dependent upon Medicaid and Medicare — is a simplified ‘here are your ARVs, now go be undetectable’ package that will lead to more and more of us falling through the cracks as we age.

I think the weight of the evidence that Jules puts out can at times be overwhelming, but the message is clear: we need to reorient care to better address our needs.

And since ~50% of us ARE now HIV+50+, surely we’ve reached a point of critical mass. The only question is how best to leverage it — how to shame our community-based institutions to take action, or, if need be, establish institutions that better represent us.

On Aug 15, 2018, at 9:43 AM, Jules Levin via Groups.Io <julev@...> wrote:

IAC- Aging / Comorbidities / Fatty Liver / Kidney & Heart Diseases / Mortality in HIV+ Women & Men

The New Silent Majority - Aging Older HIV+ 
- the inequity, ageism & undignified treatment of older aging HIV+ many of whom need much more attention then they get now from US based advocates or federal & local officials, they need RWCA funded services, extended visitations with doctors, better care coordination, the needs will only increase as the entire HIV+ population in the US emphatically is aging, yet US advocates & officials persist in ignoring the problem despite clearly knowing of this problem. Our 1st surviving elderly generation deserves more than they get. Its stigmatized ageism among our own, just like in the general society. Large US agencies/AIDS Service Organizations in major large US cities & policy groups based in Wash DC have not done anything to influence the federal government or local officials to address these needs, on a local basis their programs if they have any for this group are not effective. There is no excuse - ageism, stigma, its as if they are all just waiting for older aging HIV to die off as they focus only on prevention and other issues, but essentially ignore the serious plight of the aging. These large city AIDS groups and policy groups do not understand the impact of aging in HIV+ but there is no excuse because they have ignored all the signs and information. I refer to US based organizations because in Europe the community has formed an aging coalition & they have been holding meetings across Europe and trying to influence government officials, the EATG and many advocates in Europe are leading this movement but there is NOTHING in the USA, its ignored.

from Jules: studies reported at IAC reinforce what we knew - the changed HIV epidemic to an older fading older population of people increasingly contracting more & more comorbidities and increasing rates & worsening frailty and disability, loss of daily independent functioning for many, and in the face of this most advocates in the USA, policy advocates & federal & local officials ignore that 1 - we need to better address this “new HIV Epidemic”, 2 - we need special support services for those aging who need them & their clinics & clinicians, 3- we need more education for clinicians regarding prevention & care & treatment for key comorbid diseases including heart disease, brain, neurologic & cognitive impairment including depression, social isolation & homebound, 4- we need broader & expanded research including more patient focused research. NIAID priorities list aging/comorbidities in the top 5 but this is a fake herring, in reality NIAID & OAR has made it clear to researchers funding is severely limited in this field, many study funding requests are denied. Requests to begin addressing these problems to NIAID, HHS & OAR are ignored. Long term care & living plans are not even discussed: with increasing disability there will be a need for housing & institutionalizing those who are unable to care for themselves at home. Integral to the HIV epidemic is a population who are often living alone - having lost friends and family and unlike the HIV-negative general population who much mire often have family and children to assist in care as they age - HIV+ do not have this.

What you find at IAC was many aging & coorbidity studies reporting not surprising but expected results: 
1. depression, anxiety & insomnia is 3-7 times higher among aging older HIV+
2. heart disease in the HIV HEART study reports up to 75% increased risk for heart failure in HIV+ but similar results have been reported in many other studies in recent years. Cardiovascular disease & MI/stroke rates are much greater among HIV+, as HIV+ age the slope of increase for risk is much greater.
3. again not surprising 2 frailty studies from the AGEhiv study in the Netherlands reported frailty strongly is associated with increased premature death in HIV+ - not surprising & previously reported. Of note the prevalence rates of frailty were very high over 50% no matter what the age group with pre-frailty or full frailty, for >65 year olds rate of pre-frailty or full frailty was almost 80%. for 45 year olds the rate was still 50%. The mortality risk increased from close to zero to around 15% for those fully frail but only several percentage points for the in pre-frailty. The hard ratio however was greater than 10 fi=old increased death risk among frail. Frailty & having comorbidities was related, and these too increase mortality risk, and frailty remained independently associated with developing comorbidities.
4. a Brazil  study reported 2 fold increased risk for fatty liver among HIV+ who do not have HCV or HBV.Its called non viral hepatitis fatty liver & steatosis & NASH. HIV+ are at greater risk for fatty liver as we have all the risk factors diabetes, heart disease, lipid abnormalities, a history of ARTs that increase risk for fatty liver, hypertension. metabolic abnormalities, inflammation. Thsi disease has recently got much more attention with discussions & studies in HIV at CROI & other conferences, see link below to history of these studies and background. Its estimated NASH will one day be the greatest cause for liver transplantation.
5. I’d like to bring your attention to study below reporting ART interruptions in kids caused brain damage, although the study is in kids who are different than adults its related to taking interruptions and the risks. Several published studies find ART interruptions increase risk for long term brain or CNS damage, so are ATI interruptions however brief in cure studies safe, we don’t know for sure but what we know so far suggests yes.
5. COMORBIDITY & MORTALITY Studies - 2 listed below report doubling of older >60 HIV+ at clinic in last 7 years along with much greater prevalence of kidney disease, boned disease, having 3 or more comorbidities. The 2nd study also from Lonod reported 77% of deaths were due to comorbidities among HIV+. Many comorbid condition are listed in this study, of note from hypertension to liver decompensation & diabetes. AIDS was as a cause of death from 15% to 25% of deaths.

IAC- Aging / Comorbidities / Fatty Liver / Kidney & Heart Diseases / Mortality in HIV+ Women & Men

NEW - IAC Reports

IAC: Beyond the 60s: Changing co-morbidities in people living with HIV aged over 60 attending clinic in 2010 and 2017 - (07/25/18) - this analysis is to characterize and compare the prevalence of comorbidities in PLHIV aged over 60 attending a London clinic from 2910-2017: proportion over 60 doubled since 2010; chronic kidney disease doubled in this time from 15% to 30%; bone disease rates increased from 21% to 37%; having 3 or more comorbidities rate increased from 22% to 31%, although ischemic heart disease decreased from 17% to 9%. Polypharmacy for non-HIV drugs of course also increased from an average of 4 to 6 drugs.

IAC: Beyond the 60s: Changing co-morbidities in people living with HIV aged over 60 attending clinic in 2010 and 2017 - (07/25/18) - this analysis is to characterize and compare the prevalence of comorbidities in PLHIV aged over 60 attending a London clinic from 2910-2017

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Liz Highleyman
Medical journalist

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