I have managed to post a World AIDS Day story a l m o s t every year since 2006 when I joined Daily Kos. It’s remarkable to me how many people seem to think that because there are medications available not only to treat HIV but even to keep it from being transmitted that there has been a functional cure. That is sadly not so and one of the many reasons I try and post on World AIDS Day is simply as a reminder of that unfortunate fact. There’s still plenty left to do.
My late sister’s first husband was born with muscular dystrophy. He was fortunate to survive into his mid 40s; most people with muscular dystrophy, particularly the specific variant he had, never make it past their teens. As far as he was concerned the Jerry Lewis Muscular Dystrophy Telethon was an event for which life had to be paused and he watched it on television religiously. Whatever I may have felt about him personally (we didn’t get along) or about Jerry Lewis or the telethon itself, I always understood why that particular event was meaningful to him. What the Jerry Lewis telethon was to my brother-in-law World AIDS Day is to me.
World AIDS Day was conceived of in 1987 by the World Health Organization (WHO). It was inaugurated on December 1, 1988 and has been observed by all UN member nations since then. In 1996, UNAIDS (Joint United Nations Programme on HIV/AIDS) has been responsible for coordinating World AIDS Day activities. This year’s World AIDS Day slogan is “Equalize.”
From their website:
The “Equalize” slogan is a call to action. It is a prompt for all of us to work for the proven practical actions needed to address inequalities and help end AIDS. These include:
- Increase availability, quality and suitability of services, for HIV treatment, testing and prevention, so that everyone is well-served.
- Reform laws, policies and practices to tackle the stigma and exclusion faced by people living with HIV and by key and marginalised populations, so that everyone is shown respect and is welcomed.
- Ensure the sharing of technology to enable equal access to the best HIV science, between communities and between the Global South and North.
- Communities will be able to make use of and adapt the “Equalize” message to highlight the particular inequalities they face and to press for the actions needed to address them.
Data from UNAIDS on the global HIV response reveals that during the last two years of COVID-19 and other global crises, progress against the HIV pandemic has faltered, resources have shrunk, and millions of lives are at risk as a result.
Four decades into the HIV response, inequalities still persist for the most basic services like testing, treatment, and condoms, and even more so for new technologies.
Young women in Africa remain disproportionately affected by HIV, while coverage of dedicated programmes for them remains too low. In 19 high-burden countries in Africa, dedicated combination prevention programmes for adolescent girls and young women are operating in only 40% of the high HIV incidence locations.
Only a third of people in key populations— including gay men and other men who have sex with men, transgender people, people who use drugs, sex workers, and prisoners—have regular prevention access. Key populations face major legal barriers including criminalisation, discrimination and stigma.
I probably could (and perhaps should) have bolded the entirety of what I’ve quoted above. Health access equity has been an issue within the AIDS pandemic since the very beginning. Much the same of course applies with respect to COVID.
I’d like to give you a brief explanation of why World AIDS Day is and remains important to me. The explanation is guaranteed, brevity is not.
The AIDS pandemic officially dates to June 5, 1981 when the very first published medical journal article about what would soon be called “AIDS” appeared in the CDC’s Morbidity and Mortality Weekly Report. Obviously there had been cases prior; some were reflected in that initial report, others were there if you talked to the right person who knew someone who knew someone who came down with all of these weird conditions and then died. The late Randy Shilts, in his book And the Band Played On documented cases like that. And then there’s me.
I’ve been living with HIV for 42 years now, for 37 of those years I’ve known that to be the case. I tested positive for HIV in 1985, was able to use information from the hepatitis B vaccine clinical trials (I was a participant) to trace the date of my infection to no later than May of 1981 and then, by connecting the dots ultimately realized I had likely been infected early the previous December, most likely December 5, 1980 which happened to be a Friday that year. I was a fairly typical 29-year-old gay man so I’m sure you who are reading this can figure out what I might have been doing on a Friday night. Obviously the risk of contracting HIV was not on my radar at the time as nobody in the world knew such a thing existed. I found myself extremely ill about two weeks after that particular encounter. I assumed I had the flu, which under the circumstances was entirely reasonable at that time. And I didn’t connect my illness with that particular encounter. The guy’s name, by the way, was Chris. We remained casual acquaintances for a number of years and at some point we discovered that we both had HIV. I don’t know what happened to him. I moved across the country from DC to San Francisco in 1986 and although I would occasionally run into him when I happened to return to DC that ceased to happen at some point. I can only assume he passed away due to AIDS complications as did so many of my friends from that era.
By the end of 1981 one person of my acquaintance had been diagnosed with AIDS. By 1984 several friends and neighbors had passed away. A colleague was diagnosed in 1983 and passed away the following year. He was memorialized at a meeting in my office during which nobody even intimated that he was gay or that he’d died from AIDS. But both were obvious. Another colleague, a gay, recovering alcoholic who was greatly influential in my life, was diagnosed in 1984 and passed away in 1986. Testing positive in 1985 was a turning point for me. At the time the test for HIV had been available for only a matter of months; I was in fact the first person I knew of who had been tested. That of course changed greatly over the next couple of years.
Days after I moved to San Francisco in 1986 I met my partner Mario. We began dating a few months later. When we met I knew I had HIV; his status was unknown. We were of course very careful. We split up briefly a couple of times, once in 1988 and again in 1989. During that first break-up he went and got tested for HIV. I went with him for his test and again for the results. He tested positive for HIV. Until there was a test an AIDS diagnosis required coming down with one of a host of opportunistic infections. Once the test became available it was possible to tell approximately where one was on the scale from healthy to ill. A CD-4 count (CD-4 cells are a portion of the immune system; measuring them gives an approximate scale to determine immune function) of under 200 was viewed as requiring an AIDS diagnosis. Mario’s CD-4 count was 150. So when he got his HIV test results he was also given an AIDS diagnosis. He did well from that point, August, 1988, until March 1992 when he came down with pneumocystis pneumonia, one of the opportunistic infections most likely to kill a person living with AIDS. He recovered from the initial bout but it returned several times, leaving him increasingly disabled. When he was diagnosed with it again a few days after Thanksgiving he decided to refuse treatment. He passed away on December 4, 1992. Since that time the days from Thanksgiving onward have been a particularly fraught time for me.
But I want to get back to UNAIDS’s theme for this year:
I’m a white, middle-class gay man who lives in the city that very early on developed models for dealing with HIV. Those services provide by the city’s Department of Public Health and by the San Francisco AIDS Foundation and other organizations are intended to meet the needs of people who aren’t like me. My job provided good health benefits, which I’ve kept into retirement, and a very decent federal civil service pension. I can afford tests, I can afford medication, I can afford treatment. I can see providers of my choosing without fear of being judged or discriminated against because I’m gay or live with HIV. These are comparative luxuries. They shouldn’t be. Accessing healthcare in the US isn’t easy, at least if you aren’t white, middle-class and preferably male (and sometimes even if you are). As the UNAIDS statement make clear things are even more problematic in many other parts of the world, particularly in Africa. Access to adequate, non-judgemental healthcare shouldn’t depend on being of the correct group or living in the right place, or happening to be in the right place when an NGO shows up with resources available for only a small portion of those who need them. And then those who come seeking help risk being turned away and condemned for begin LGBTQ, for being part of an ethnic minority, for being sex workers. Nobody should have that sort of thing standing in the way of staying well.
So what do I do? I can convey all of this information; that’s part of it. The shirt at the top of this story mentions responsibility. It also mentions AIDS/LifeCycle. From their website:
By being a part of AIDS/LifeCycle, you will fund the work of San Francisco AIDS Foundation and the Los Angeles LGBT Center and help us work towards the following:
Raise awareness to end the stigma surrounding HIV/AIDS.
Provide a positive, life-affirming experience for people affected by HIV/AIDS.
Grow our community of activists, volunteers, and ambassadors fighting to end AIDS.
Honor those who have passed from AIDS-related causes.
My personal way of taking responsibility for ending HIV and AIDS takes the form of raising money and participating in AIDS/LifeCycle. If I understand correctly AIDS/LifeCycle is the single largest fundraising event in the world for HIV/AIDS services. This year’s event raised not quite $18 million. The amount I personally raised came to just over 0.1% of that.
I do all of the above. Because I’m a long-time participant I have casually mentored a great many people to go out and raise money and awareness. More than a few have also found a new passion in cycling; a few have actually become professional cycling coaches. All of them are ambassadors. I make sure everyone knows that I live with HIV. When I encounter someone who tells me they don’t know anyone who lives with HIV my response is “Well, now you do!”
Here is what the San Francisco AIDS Foundation is about:
San Francisco AIDS Foundation envisions a future where health justice is achieved for all people living with or at risk for HIV.
Ultimately, we strive for a day when: race is not a barrier to health and wellness; substance use is not stigmatized; HIV status does not determine quality of life; and HIV transmission is eliminated.
San Francisco AIDS Foundation promotes health, wellness, and social justice for communities most impacted by HIV, through sexual health and substance use services, advocacy, and community partnerships.
All of that meshes nicely with the UNAIDS statement I quoted above.
I spend nine months out of the year training and fundraising and being visible as a gay, HIV-positive man. I’m 71 years old; that’s what keeps me going. And because with so many other important issues governments aren’t stepping up to do what needs to be done to fight HIV/AIDS, raising money for a non-profit such as the San Francisco AIDS Foundation is the best way for me to move that project forward.
Incidentally (okay, not at all incidentally), here my AIDS/LifeCycle fundraising page. Please visit, and if you’re inclined and are able to, make a donation.
The video below shows me in 2016. At the time I had just turned 65 and had just, a few weeks before AIDS/LifeCycle, gone on Medicare...a remarkable achievement for someone who probably was sure he’d never make it past 40. The video is getting old but I often include in on stories related to HIV/AIDS because it’s useful and makes a point. (Credit for the video: Mischa Hedges/Trimtab Video)
