This past Sunday was my birthday; I turned 73. If you asked why an old guy like me would try to ride a bicycle from San Francisco to Los Angeles I wouldn’t be surprised or offended. I question my sanity as well.
Ever since joining this site in 2006 I have, right around my birthday, published a story about my ongoing participation in AIDS/LifeCycle, a charity bike ride that raises money to fund the services of the San Francisco AIDS Foundation and the Los Angeles LGBT Center’s Jeffrey Goodman Clinic. This year will mark my 25th year of participating in that event as well as the California AIDS Ride which preceded it and which benefited the same organizations, and TogetheRide, a one-year event that served as a COVID-era substitute in which we pledged to ride a certain number of miles locally, socially distanced (with workouts, runs, walks, and so on counting toward those miles). Together those organizations serve as major providers of medical and other supportive services for those living with HIV or at risk of contracting it. I’ve been HIV-positive for over 43 years. Unlike many of my peers I stayed healthy and employed and had access to employer-provided health insurance, followed in due course by access to Medicare. Many of the Foundation’s and the Center’s clients a members of one or more marginalized groups who haven’t had the sort access to care that I have. Part and parcel of the mission of both organizations is not only to provide immediate medical services to but to work for equitable access to healthcare generally.
I became HIV-positive, without knowing it until much later, at the end of 1980. I was 29 years old when I was infected and I have watched the entire pandemic play out around me.
Normally I’d be publishing this story before or on my birthday but the Sunday of Memorial Day Weekend is not exactly the best way to garner attention. Which is why I’m posting it on the day after Memorial Day and two days after my birthday.
Follow me before the fold and I’ll tell you specifically why I continue to feel passionate about this particular issue and why therefore, even though I’m now in my 70s, I continue to ride my bike and participate in charity rides with the goal of ending HIV and AIDS.
It never fails to amaze me how many people think that HIV and AIDS are no longer a problem. Some even (and yes I’ve had people observe this in all innocence) think HIV has been eradicated. I had a conversation a while back, in the elevator of a hospital, in which the person I was talking to quite literally said to me “Oh, I thought they’d cured that.”
According to Dr Monica Gandhi who teaches medicine at UCSF and is director of the UCSF Gladstone AIDS Research and medical director of the San Francisco General Hospital HIV Clinic, known as Ward 86 there are 1.6 million new HIV infections every year and currently over 39 million people in the world who live with HIV. The number of new infections translates to 4,383 new HIV infections every day.
In previous years, usually in conjunction with World AIDS Day which is about halfway across the calendar from today, I documented how it’s likely I contracted HIV in early December of 1980. I am one of the longest-term HIV survivors I know of. No more than about two percent of the individuals who contracted HIV when I did are still alive today. I grew up at a time when gay people were universally in the closet and when gay bashing was considered a sport rather than a hate crime. Even though I came out in New York City several years after the Stonewall riots I was still closeted in many ways, not to mention having few if any civil rights and being surrounded by homophobia (though not in my family). I have a long history of substance abuse which having HIV eventually forced me to confront and fortunately I did that 36 years ago. I was what those of us in the know refer to has “high-bottom,” which means basically that everything looked fine from the outside. I was still employed and employable when I hit bottom, had a decent apartment, a decent car, and a mostly-functioning primary relationship. But things were headed in the wrong direction. And there were ways in which I just lucked out. Unlike many of my friends I was never exposed to crystal meth when I might have been seduced by its allure. But it was a close call. I cannot imagine a scenario in which my life and my health would not quickly have fallen apart. In other words there are multiple reasons why I should be dead.
Because I was an adult when HIV first appeared I experienced all of the losses the LGBTQ+ community suffered from during the worst days of the pandemic. I lost something like 160 friends, neighbors, and colleagues due to AIDS. My partner Mario Luna passed away in December 1992; my previous partner Bob Framo passed away the following April. So many people who had a major impact on my life were lost. And that’s just me personally. Multiply it by the millions of people who knew and cared about someone who died from an AIDS-related condition. That’s an incredible amount of loss to have to contend with.
On top of that there is the stigma surrounding HIV which continues to this very day. I don’t think I will ever forgive President Reagan for refusing to so much as utter the word “AIDS” in public for years after it appeared. The reports of staff meetings during his presidency that treated AIDS as simply one more homophobic joke are widely known of. And that is not an outlier. Early on in the pandemic it wasn’t just the people who assumed they had no risk of contacting AIDS who had great fears about it. Plenty of gay men who really should have known better carried—and still carry—all sorts of absurd ideas about HIV and AIDS with them. Ask virtually any HIV-positive gay man and they will report that even in major cities with thriving gay communities they are still rejected in small ways for being honest about their status.
HIV transmission is still more common among marginalized populations: Younger gay men and men who have sex with men (but don’t identify as gay/queer/bisexual), people of color, and sex workers, particularly transgender sex workers. It’s arguable that white, gay, cisgender males like myself are no longer marginalized but strictly speaking that is true in relatively few places, mainly big cities. And even then there is a class bias. Despite the best efforts of the Affordable Care Act many who live in poverty have difficulty accessing any kind of healthcare.
The AIDS pandemic is officially said to have begun on June 5, 1981 when the CDC’s Weekly Morbidity and Mortality Report included a short entry on a cluster of illnesses affecting gay men in their mid-20s to mid-40s, illnesses not usually associated with people that age. Early in 1982 that constellation of illnesses first became known as GRID (“Gay Related Immune Disorder”) and later on that same year was re-titled AIDS. There is evidence that HIV, which causes AIDS, was circulating in the gay community and probably elsewhere from the early 1970s onward. The median time to progress from infection to full-blown AIDS in the absence of treatment is estimated to be about 11 years. So some of those who were diagnosed early on had clearly been infected for a number of years.
Forty-three years in we have no cure and no vaccine. A cure seems unlikely at this point. A vaccine seems more promising. Although the COVID pandemic set things back when it came to HIV, the technology developed to create successful COVID vaccines may well turn out to work against HIV as well. Still it’s going to be a while for that to come to fruition. Meanwhile the only weapons we have to combat HIV consist of treatment and prevention. And that is why services are so important and access to services just as important.
AIDS/LifeCycle raises money to support two organizations that provide prevention and treatment services aimed at ending new HIV infections. That includes not only things like housing assistance, substance abuse treatment, help with accessing other social services, but also advocating for the health needs of marginalized communities. And as the median age of people living with HIV increases, providing for the needs of seniors who live with HIV or are at risk is becoming increasingly important.
Back in 2016 I was among the riders profiled in the Ride’s media outreach. I got to speak to the press several times. As part of the ride’s overall publicity this video was shot the day before that year’s ride and the first day of it and was shown in camp the following evening. I have to hand it to the producers; they made me sound coherent. The visual aspect gives a bit of a perspective of the actual experience.
I hope I’ve informed and inspired you sufficiently to get you to donate. I set a goal consistent with the amount of money I’ve raised each of the past three years. To be honest that goal is pretty high. But I think it’s worth shooting for. Here is a link to my fundraising page.
And if you need STILL more inspiration there’s this…
Thanks for reading!
