Today, December 1, is World AIDS Day, the purpose of which is to remind the world that HIV and AIDS continue to affect the lives of countless individuals throughout the world, regardless of race or ethnicity, socioeconomic class, gender identity or sexual orientation. In addition World AIDS Day exists to serve as a way of memorializing the many people who have been taken by HIV and AIDS over the past thirty-nine years. I’m going to cover both of the reasons for World AIDS Day, hopefully with some degree of success.
I officially joined Daily Kos in July of 2006; my first diary/story/post appeared on December 1 of that year and of course addressed World AIDS Day. Since then I have continued to post a World AIDS Day diary every year with, I believe, only one exception.
World AIDS Day is an important day for me. I’m a gay man, I’m 68 years old and I live with HIV. Because of my age and my sexual orientation I was around as an adult when the AIDS pandemic began to unfold during 1981 and when it exploded in the early 1980s and beyond.
Some people go to the barricades; that’s not really my way of approaching things. I continue to speak out on HIV and AIDS not only on World AIDS Day but throughout the year. I’ve appeared (briefly) in documentaries. I was on local television twice. My first appearance was on KTLA, a Los Angeles station in 2000. During that brief interview I came out publicly for the first time as a person living with HIV. In 2011 I was part of a panel discussion with AIDS research pioneer Dr Jay Levy among other noteworthy individuals; I was seriously intimidated but managed not to make a fool of myself. And, of course (those who know me here know this was coming), I continue to raise money for the San Francisco AIDS Foundation by participating in a week-long charity bike ride known as AIDS/LifeCycle. And of course I write stories like this one.
In my title I noted that the entire first week of December is “challenging” for me. Apart from December 1st, the 4th and the 5th are meaningful for me as well. This December 4th marks 27 years since I lost my partner Mario Luna to AIDS. This December 5th marks 39 years since I acquired HIV, though of course I didn’t know that at the time it happened. Somewhat off-topic but well worth mentioning anyway: December 8th marks 39 years since John Lennon was murdered. That murder itself reflects the end of an era that began in the early 60s. The start of the AIDS pandemic reflects the beginning of a different era. The 60s and 70s represented hope and optimism. The era that began with the first cases of AIDS—as well as the election of Ronald Reagan—and continues today is unfortunately a much darker one. I am fortunate to have seen both eras because it gives me at least a bit of perspective.
There are statistics I could cite: over 40 million people have been infected with HIV and more then 25 million have died. I think it’s worth keeping in mind, lest the haters continue screeching that AIDS is God’s punishment for gay people, that worldwide the overwhelming majority of deaths related to AIDS and the overwhelming majority of new infections have been among people who were heterosexual.
The CDC’s website contains numerous fact sheets related to HIV/AIDS. The most recent data are for 2017 but it actually takes a good deal of time to collect and analyze this sort of data and more recent information is still relatively limited.
There’s so much information it’s tough to know where to start and what to include.
A few items worth mentioning:
- In 2017 there were 38,739 HIV diagnoses in the United States
- Of those diagnoses, some 62.5% involved male-to-male transmission…
- And of that proportion only 29% involved white males; the majority involved people of color and the largest single component of that cohort was black men.
- People aged 15 to 34 comprised the largest cohort of diagnoses by age and people 34 and younger comprised over half of all new diagnoses.
- Half of all people currently living with HIV are over 50 years old. Although younger people continue to represent more than have of new diagnoses the proportion of people over 50 who live with HIV will continue to rise thanks to improved treatment and access to treatment.
- On the upside this article notes that there were only 197 new HIV diagnoses in San Francisco in 2018, the lowest it’s been since before the peak of new infections in the early 1990s.
It’s important to note based on the above, and especially based on the second and third set of statistics, that in the US HIV disproportionately effects those people who are already marginalized, stigmatized and demonized.
For the past few years I have been increasingly concerned with my status as part of the growing number of people over 50 who live with HIV. Living as long as I have with HIV and staying reasonably well is certainly a blessing but it comes with a set of challenges. The hiv.gov web page on the subject has this to say:
[I]ndividuals living with long-term HIV infection exhibit many clinical characteristics commonly observed in aging: multiple chronic diseases or conditions, the use of multiple medications, changes in physical and cognitive abilities, and increased vulnerability to stressors.
While effective HIV treatments have decreased the likelihood of AIDS-defining illnesses among people aging with HIV, HIV-associated non-AIDS conditions are more common in individuals with long-standing HIV infection. These conditions include cardiovascular disease, lung disease, certain cancers, HIV-Associated Neurocognitive Disorders (HAND), and liver disease (including hepatitis B and hepatitis C), among others.
In addition, HIV appears to increase the risk for several age-associated diseases, as well as to cause chronic inflammation throughout the body. Chronic inflammation is associated with a number of health conditions, including cardiovascular disease, lymphoma, and type 2 diabetes. Researchers are working to better understand what causes chronic inflammation, even when people are being treated with ART for their HIV disease.
HIV and its treatment can also have profound effects on the brain. Although AIDS-related dementia, once relatively common among people with HIV, is now rare, researchers estimate that more than 50 percent of people with HIV have HAND, which may include deficits in attention, language, motor skills, memory, and other aspects of cognitive function that may significantly affect a person’s quality of life. People who have HAND may also experience depression or psychological distress. Researchers are studying how HIV and its treatment affect the brain, including the effects on older people living with HIV.
While I personally have not had most of these symptoms, at least not yet, I do have to face the reality that having HIV long-term could certainly shorten or affect the quality of my life even if I am unlikely to contract any of the opportunistic infections whose early appearance led to the discovery of AIDS. HIV is now viewed as a chronic inflammatory condition rather than as a death sentence but the side effects of having an immune system continually stimulated are about as described above. And although HIV treatments have greatly improved there is a price to be paid for staying on medications for decades. Even if a cure were to come about tomorrow—an accessible and readily affordable one—there is nothing to suggest that the consequences of having HIV and taking HIV medications for an extended period of time would thereby be reversed, much less eliminated. So it seems pretty apparent that there’s going to be a need for services for people living with HIV for quite some time.
Apart from the strictly medical experiences people in my situation often experience a degree of isolation simply because so many of our long term friends didn’t survive. I’m reasonably good at making new friends so I have not had this experience to a major degree but the stories are out there. There is an ongoing epidemic of crystal meth use among older gay men, HIV-negative or HIV-positive. This is hardly surprising. I’m not aware of what’s available in other areas but the San Francisco AIDS Foundation has a walk-in group specifically for gay and bisexual men over 50 who have substance abuse issues and a more organized group for gay/bi men over 50.
More clearly needs to be done. Every year I have at least one conversation with San Francisco AIDS Foundation staff on the issue of services for long-term survivors and they are certainly making progress. I assume or at least I hope that there are similar efforts underway in other cities and towns around the country and around the world.
I remain truly grateful that I’m still around and that I’ve been around long enough to worry about getting older. Still, I would much rather have my old friends still here with me to share the gratitude along with the worries.