Today, December 1st, is World AIDS Day. As I’ve been around since the beginning of the epidemic and have been living with HIV the entire time I’ve chosen to focus on the challenges of aging with HIV.
First it was “gay cancer,” then it was “GRID” (gay-related immune deficiency) and then AIDS. What we commonly refer to as AIDS is technically referred to as “Stage 3 HIV infection.” Stage 1 refers to acute infection—the symptoms commonly experienced at the time of infection. Stage 2 refers to chronic infection—the time between initial infection and when, in the absence of treatment, the body becomes susceptible to the opportunistic infections that characterize the disease that has been with us for almost 38 years.
December 5th, 1980 was a Friday night and thus perfect for a 29-year-old gay man like me to hit the clubs and see who was around. That night changed my life though I wouldn’t know it for many years. That was the night I contracted HIV.
The San Francisco AIDS Foundation is the primary AIDS Service Organization (ASO) in the San Francisco Bay Area and, along with New York’s Gay Mens’ Health Crisis, is one of the two oldest such organizations in the world. Between the fall of 1998 and May of this year I raised a bit over $124,000. By the end of next May I aim to raise at least an additional $10,000 by participating in AIDS/LifeCycle, a week-long cycling event that begins in San Francisco and ends in Los Angeles. Perhaps 10 percent of all participants in the ride are, like me, HIV-positive.
Two weeks after that December night I experienced Stage 1 HIV infection which I thought at the time was simply a case of influenza. Thirty-eight years after contracting HIV I am still alive and mostly well. I haven’t been able to find any data but my guess is that at least 95% of the people who contracted HIV when I did or earlier are not alive today; many would have died during the horrible years between about 1982 and 1996 though two of my peers, a roommate and a short-term boyfriend, also contracted HIV at around the same time—in fact probably a couple of months before me—are still around. But almost my entire original circle of gay male friends has passed away.
It was not until 1996 that the first successful treatments for HIV became widely available (I entered a study for one of those drugs circa 1994). Since then treatments have improved even more though they are not perfect and can have side-effects. HIV can and often does develop resistance to certain medications, in certain people. Because there are more medications out there there are also more options and thus fewer whose HIV is untreatable. I have personally experienced side-effects from HIV medication. About six years ago I had to suddenly stop the treatment regime I was on because at least one of my three medications was causing significant and irreversible kidney damage. My kidney function is adequate though far from perfect (I’m nowhere near dialysis or transplant territory at least thus far). And there were medications I could switch to that are safer.
In contrast to earlier times people who contract HIV are not expected to pass away soon.
In the early 1980s average life expectancy from diagnosis was on the order of three years. Here is some data on life expectancy with HIV.
In a recent scientific presentation looking at people who received care in the massive U.S. Kaiser Permanente health system between 1996 and 2011, we learned how incredibly far we've come in a very short time in treating HIV. The study showed that additional life expectancy for a 20-year-old person with HIV was only 19 years back in 1996, meaning a total lifespan of only 39 years on average. By 2011, additional life expectancy had increased to 53 years, meaning a total lifespan of 73 years on average. By comparison, the study found that a 20-year-old person without HIV lived an additional 65 years, for a total of 85. So, in this study, overall, HIV-positive folks were found to live about eight years less than HIV-negative folks as of 2011.
This BBC article notes:
Twenty-year-olds who started antiretroviral therapy in 2010 are projected to live 10 years longer than those first using it in 1996...
Another article notes the following:
The survival rate for HIV-positive people has also dramatically improved since the first days of the HIV epidemic. For example, researchers who examined the mortality of participants in a study of Swiss people with HIV found that 78 percent of deaths between 1988 and 1995 were due to AIDS-related causes. Between 2005 and 2009, that figure dropped to 15 percent.
So people like me are living longer and, when we die, we die from things other than HIV. I am fortunate that I have lived long enough to getting old when so many of my friends lost their lives while still in their 20s, 30s and 40s. It’s because of that good fortune that I try and do things (like riding a bike from San Francisco to LA) to honor their memories. But getting old with HIV is still challenging. The article I linked above notes the following:
As time passes, people living with HIV may begin to develop certain side effects of treatment or HIV itself.
These may include:
- accelerated aging
- cognitive impairment
- inflammation-related complications
- effects on lipid levels
- cancer
The body may also undergo a shift in how it processes sugars and fats. This can lead to having more fat in certain areas of the body, which can change the body’s shape. However, these physical symptoms are more common with older HIV medications. Newer treatments have far fewer, if any, of these symptoms affecting physical appearance.
I have been told that long-term survival with HIV elevates the risk of heart disease, stroke and diabetes as well as certain kinds of cancer, most notably non-Hodgkins lymphoma. In addition the article linked in the quote above notes a higher incidence of anal cancer, liver cancer and lung cancer. Gay men and lesbians tend to have higher rates of substance abuse and higher rates of nicotine use than the general population and apparently gay/bi men with HIV are even more likely to be smokers than the general gay/bi male population.
When the AIDS epidemic started many of the people who were infected early and who died before there were effective treatments were relatively young. Nowadays, at least in San Francisco, about 2/3 of all people living with HIV are over 50 years old and that percentage is gradually increasing. One of my friends, a registered nurse who went on to become a nurse practitioner, chose as his specialty the field of gerontology with a specific focus on the needs of people living with HIV. He sero-converted in his early 20s and is now in his early 40s so he could end up being the recipient of services of the sort he himself provides.
AIDS Service Organizations by their nature provide approximately the same sorts of services regardless of where they are located. The variations depend mainly on funding, population served and what is legally feasible where they are located. To illustrate the latter, the San Francisco AIDS Foundation has for a number of years provided a needle exchange program (because injection drug users are at very high risk of contracting HIV; when syringes aren’t available they tend to be shared and re-used). When their program first began it existed in the shadows. It now operates legally. That may not be feasible in some areas. But the core of services is relatively consistent from place to place and organization to organization. Those services include
- Access to health care
- Access to housing
- Benefits counseling (including navigating the health care system)
- Prevention services which keep at-risk populations free from HIV
- Substance abuse treatment
- Socialization services in the form of drop-in groups and outreach to various marginalized communities
The San Francisco AIDS Foundation has two programs specifically targeted to gay/bi/transgender men over 50. One is The Elizabeth Taylor 50-Plus Network while the other is “Damn Daddy,” a weekly drop-in support group gay/bi/trans men over 50 which is part of the Stonewall Project, the Foundation’s substance abuse program. These are good programs and based on my personal observation at least half of the people who access these particular programs also live with HIV. Still I think specifically targeted gerontology-based services may need to become part of the mix.
The link below is well worth following.
New UNAIDS report shows that 75% of all people living with HIV know their HIV status
A new report from UNAIDS shows that intensified HIV testing and treatment efforts are reaching more people living with HIV. In 2017, three quarters of people living with HIV (75%) knew their HIV status, compared to just two thirds (67%) in 2015, and 21.7 million people living with HIV (59%) had access to antiretroviral therapy, up from 17.2 million in 2015. The report shows, however, that 9.4 million people living with HIV do not know they are living with the virus and urgently need to be linked to HIV testing and treatment services.
The report shows that one of the biggest barriers to HIV testing is stigma and discrimination. Studies among women, men, young people and key populations have revealed that fear of being seen accessing HIV services, and if the person is diagnosed, fear that this information will be shared with family, friends, sexual partners or the wider community, was preventing them from accessing HIV services, including HIV testing.
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For key populations—gay men and other men who have sex with men, transgender people, sex workers, people who use drugs, people in prisons and other closed settings and migrants—these barriers can affect access to an even greater extent. Stigma and discrimination, from society and health services, can deter members of key populations from accessing health care, while criminal laws can compound that discrimination, increase rates of violence and create additional barriers, including fear of arrest and harassment.
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Access to HIV testing is a basic human right, and UNAIDS is calling for a global commitment to remove the barriers preventing people from testing for HIV, which include eliminating HIV-related stigma and discrimination, ensuring confidentiality in HIV testing and treatment services, deploying an optimal mix of HIV testing strategies to reach the populations most in need, integration with other health services, removing policy and legal barriers hindering access to HIV testing and treatment, expanding access to viral load monitoring in low- and middle-income countries and ensuring access to early infant diagnosis for newborns.
HIV is still the subject of enormous stigma not only in the US but throughout the world. We won’t win the fight against HIV until that stigma and all of the various sorts of bigotry that stand in the way of treatment access are successfully overcome.
Gay and lesbian seniors often experience discrimination when it comes to housing. Couples’ relationships may not be recognized in institutional settings. Gay seniors may experience homophobic bigotry from roommates in institutional settings such as assisted living and nursing facilities or they may experience homophobia directly from caregivers or from facility staff or management. The stigma of HIV, directed mainly to older gay men, can’t help but make things even more of a challenge. Again, going forward, combating these forms of prejudice will become an increasingly important aspect of controlling HIV.
