"Let us give publicity to HIV/AIDS and not hide it, because [that is] the only way to make it appear like a normal disease." "One of the things destroying people with AIDS is the stigma we attach to it."
Nelson Mandela
In 2006 I made my debut as a diarist here by posting a diary on World AIDS Day. I've done a World AIDS Day diary every year since then; there's no reason for me not to continue this tradition. Sometimes those diaries do well, sometimes they disappear virtually unnoticed. Sometimes that's unfortunate; other times that's probably a good thing. This year, I decided to start working on this one well in advance so I don't have to just toss something up there without due thought, consideration and editing. In writing diaries, I try to focus on things I know at least something about; HIV is one of the few topics where I'm on pretty solid ground.
I certainly can't claim that I don't have a personal interest or stake in how this particular diary is received; my involvement in AIDS charity fund-raising work is well-known here and I'm not going to gloss it over. We'll get to the particulars at the end (or you can just follow the link in my sig line). Along the way, I'll explain some of the more personal significance of this particular World AIDS Day.
The coming year will represent the thirtieth anniversary since the officially acknowledged beginning of the AIDS epidemic. The first published report famously appeared in the June 5, 1981 edition of the Center for Disease Control's "Mortality and Morbidity Report" (naturally it was not referred to as AIDS, or really as anything). The first newspaper article on the future pandemic, was published a month later in the New York Times. The appearance of that article frames the opening scene of the 1989 movie Longtime Companion, the first Hollywood film to address AIDS.
This year's World AIDS Day will be a sad milestone for many reasons. Many of those reasons are global: we don't have a cure, we don't have a means of guaranteeing treatment for all who need it, and there is still plenty of stigma attached to having HIV and AIDS. The latter is the reason for my commencing with the quote from Nelson Mandela. It's a powerful statement, and the truth of what Mandela is saying continues to reverberate throughout the world, most notably these days in Uganda. The attempt by religious extremists in that country, supported implicitly or even explicitly by their cohorts here in the US, to demonize gays and lesbians includes the threat of capital punishment for those who transmit HIV sexually.
Before we get personal and it WILL get quite personal, here's some basic information by the numbers.
According to the best estimates, the number of people living with HIV worldwide is somewhere between 31.1 million and 35.8 million, including as many as 2.8 million children under the age of 15. Annually there are currently between 2.4 million and 3 million new infections, and between 1.7 million and 2.4 million deaths.
The most UNAIDS Global Report includes some hopeful news, reporting that in some 33 countries, most of them in sub-Saharan Africa, the incidence of new infections has decreased by 25% or more, though it has also increased by that figure in seven other countries.
But the most important information to be gleaned from the above is this:
THE OVERALL GROWTH OF THE GLOBAL AIDS EPIDEMIC APPEARS TO
HAVE STABILIZED. THE ANNUAL NUMBER OF NEW HIV INFECTIONS
HAS BEEN STEADILY DECLINING SINCE THE LATE 1990S AND THERE ARE
FEWER AIDS-RELATED DEATHS DUE TO THE SIGNIFICANT SCALE UP OF
ANTIRETROVIRAL THERAPY OVER THE PAST FEW YEARS. ALTHOUGH
THE NUMBER OF NEW INFECTIONS HAS BEEN FALLING, LEVELS OF
NEW INFECTIONS OVERALL ARE STILL HIGH, AND WITH SIGNIFICANT
REDUCTIONS IN MORTALITY THE NUMBER OF PEOPLE LIVING WITH HIV
WORLDWIDE HAS INCREASED.[Caps in the original; emphasis added]
According to information provided by the San Francisco AIDS Foundation, between the "official" inception of the epidemic and 2008, approximately 60 million people have been infected with HIV and 25 million have died. Any way you slice it, those are staggering numbers. It need not have been this way. Had action been taken early on, things might very well have turned out differently.
Unfortunately, because the first known victims of AIDS were gay men and, later on, IV drug users; relatively little constructive action was taken to intervene at the inception of the epidemic. It's well known that President Reagan did not publicly mention AIDS until 1987. Along with many people I know, I will never forgive him for his failure to act early and decisively.
I personally find it quite ironic that, of the 30 to 35 million individuals living with HIV today and of the many millions who have died, the vast majority worldwide were/are heterosexual men and women, yet in many parts of the world, AIDS is still thought of as a "gay disease," even in places where that currently is not so and probably never was. It is certainly true that the early association with homosexuality--male homosexuality in particular--IV drug use, poverty and "unsanctioned" sexuality in general certainly has reinforced the stigma that AIDS bore from the beginning. Which is why a frank discussion of all of these--homosexuality, non-monogamy, sex for money, substance abuse, race, and class is and must be part of any meaningful attempt to eradicate the scourge we know of today as AIDS. In addition, even though there really ought not to be any connection at all, it's impossible to discuss HIV and AIDS without also addressing LGBT rights.
The fall of 1980 was a time of big changes, for the world, for the US, and for me. On November 4, Ronald Reagan was elected president, defeating Jimmy Carter in the midst of (and in part because of) the Iran hostage crisis. On December 8, John Lennon was murdered in front of his home in Manhattan. Those are the historic biggies, though other things happened in the world as well. However, I have a very personal reason for mentioning those two dates in particular.
I was 29 years old. Up to that point I'd lived in or near New York City for almost my entire life. That summer of 1980 had been one of the hottest on record in New York. In September I received a promotion at my job that involved relocating to Washington, DC; obviously I wasn't moving there for the weather. During my first two weeks living in DC I met two people who would have significant impacts on my life. One of them was a co-worker who became a friend and a neighbor; he took me to my first twelve-step meeting. The other was the first man with whom I had a long-term romantic relationship.
Something else of critical significance happened to me during this time--to be precise, it happened on the Friday evening prior to Lennon's murder. It was not something that would normally even register. In fact it was not something to be especially proud of. Although it didn't seem particularly noteworthy at the time or even for several years afterward, it might possibly have been one of the two or three most important things to have happened in my life. For that was the night (Friday, December 5, 1980) I most likely was infected with HIV.
Naturally I didn't know this at the time. Why would I have? As far as anyone knew, there was no such thing as HIV or AIDS. There had been some rumblings within the gay community of New York that summer about a few people coming down with some rather odd and scary illnesses that didn't normally affect men who were young and healthy. But they were only rumblings; nobody paid very much attention to them and a good portion of that attention consisted of denials that any such thing was happening or that it was in any way significant. After all, people develop odd and unexplained life-threatening illnesses all the time; it's unfortunate for the ones who have them but not anything of any lasting importance to anyone else (other than the family and friends of the victims). But regarding these odd and frightening conditions, there was no mention in the media.
I will admit for the record that at this particular time in my life I did not suffer from excessively high self-esteem. I had a reasonably responsible job. I thought I had come to grips with the fact of my sexual orientation a few years earlier, though I didn't discuss that particular fact with my parents or at work. When I was 16 I was diagnosed with ulcerative colitis, a chronic condition requiring a certain amount of on-going attention. I went to the doctor on a reasonably regular basis. I also went to the dentist when necessary. Whenever I showed up at the dentist's office, I was likely to receive a lecture on the state of my teeth and, more importantly, of my gums. I had taken up smoking when I was 17, on the night in 1968 when Richard Nixon was nominated to run for President. I smoked heavily for a few years, but had quit shortly before I turned 27. The gum problems actually went all the way back to my childhood and continued, somewhat attenuated, after I managed to give up nicotine.
In matters romantic and sexual I was a combination of careless, reckless and clueless. Carefree didn't really figure in the equation though I did my best to make it seem otherwise. I was by no means alone there; among my gay male friends, my behavior and my emotional state didn't appear to be out of the ordinary. Despite my insecurity and lack of self-worth I was a reasonably presentable young man and I did receive a certain amount of attention. Although there were some oddities surrounding the encounter I had on that particular Friday evening (the fellow I met knew the guy who'd just dumped me; they had been housemates for a time), I didn't really think too much about it after it happened; I didn't think I was going to see the guy again, other than around the neighborhood, which I found both disappointing and (because of the connection with the other fellow) relief. But beyond that? Nothing. Fact is, given my history and my behavior at the time, it's more than a bit surprising I can recall the event at all. It was something I'd done on a somewhat regular basis before and would continue to do so for at least the next several years. If I thought about it at all, other than on account of the odd social coincidence of who I'd met, it was only because I wanted it to happen more often than seemed to be the case at that time. To be blunt about it, at this period in time my sense of self-worth was excessively dependent upon how often I got laid--and with whom.
About ten days after this particular encounter I came down with the flu. Or at least that's what I thought at the time (and for a good while thereafter). And perhaps that's what I had. Or maybe I had that as well. It was early to mid-December, a pretty typical time to come down with the flu. It was only in retrospect and as a result of assembling a considerable amount of information that I came to the conclusion that this particular encounter was the one that led to me becoming infected with HIV.
In 1978 I was invited to participate in the clinical trial for a vaccine for Hepatitis B. From then until the conclusion of the trial in 1984 I was subject to periodic blood draws. The trial was quite successful by the way; in exchange for my participation I was given a full course of the required vaccinations at no cost.
In 1985 I had a serious flare-up of ulcerative colitis--the worst I'd had up to that time and actually the last one as well--and was hospitalized for a couple of weeks. Just weeks earlier, the first direct test for HIV had been licensed for commercial use. My doctor thought it would be a good idea to be tested, since the treatment I was undergoing MIGHT require drugs that could affect my immune system. By the time the results came back (the original results were lost and I had to be tested over again), I was out of the hospital and on the road to recovery. But since I'd already been tested I figured I might as well find out the results. To this day I'm still not sure whether or not I was truly surprised to find out I was positive. After all the sort of sex that was most likely to lead to becoming infected was not the kind I particularly enjoyed or even engaged in very often. Still, whatever the details might have been I was undoubtedly infected. I suspect I was in a bit of denial, even though I had been paying close attention to the epidemic from very early on; the first person I'd known to have AIDS was diagnosed in 1981 and I'd begun losing friends and acquaintances. My partner (the one who'd dumped me and who I probably not have taken back the following summer but did) and I had (reluctantly) begun practicing what is now known as "safer sex" in 1984.
The Hep B vaccine trial was run out of several locations. UCSF Medical Center was one of those; the organized follow-up they did once AIDS had been established as a serious concern led to some very important information about disease progression. I was in the New York arm of the trial; they didn't do that much follow-up with the trial participants regarding HIV status. But they were willing to do it if you asked them to, which I did in 1987. That's how I discovered I'd been positive since May 29, 1981, three days after my 30th birthday, when my internist in DC drew one of the periodic blood samples and mailed it back to New York for evaluation (at that point, as it turned out, I'd been receiving placebo). It takes anywhere from six weeks to six months following exposure for the original test for HIV to show positive results.
So there it is. Sometime between now and next spring (and I'm pretty sure my exposure took place on that December night), I will have been positive for thirty years and am at this point living with HIV for more than half of my increasingly and surprisingly long life. My mom turned 85 the day after Thanksgiving. She's slowed down a bit in the past couple of years but is otherwise healthy and remarkably active. I suspect that if HIV were going to kill me, it would have done so by now, though of course there are no guarantees of anything. That doesn't mean I don't have to take an enormous regimen of pills on a daily basis; some are anti-retrovirals; one is to control the colitis (which could lead me to develop colon cancer; I get a colonoscopy every three years) and the remainder--both prescription medications and dietary supplements--are to deal with the side effects of one condition or another. I take them all because it's the right thing to do. I suppose that in a very real sense, I take care of myself simply out of a sense of self-esteem that no longer is based on my sex life.
Over the past three decades I've lost upwards of 150 friends, neighbors, co-workers and acquaintances to AIDS. While I continued to run into Chris, the fellow who I believe infected me, for a number of years afterward (even my return visits to DC from San Francisco), eventually he disappeared. I assume he has passed away. The person I originally thought had infected me, a fellow by the name of Winston, died in 1992; in 1996, during the AIDS Quilt display on the Mall, I found a panel for him, as well as one for a roommate I'd lived with in New York in the late 70's. Shortly after I moved to San Francisco in 1986 I met Mario, who was my partner for six years, until he passed away, eighteen years ago this Saturday. His predecessor (whose name, like mine, was Bob) died in 1993, on the morning of the largest and most successful gay rights march in history.
I've always done a certain amount of political and/or volunteer work within my community. During my freshman year and sophomore years in college I did some canvassing for various Democrats around my campus (they usually lost). I took part in the Hep B vaccine trial, donating my body to science (so to speak). I worked on gay community information phone services in New York and DC and briefly sat on the board of directors of DC's ill-fated Gay Community Center. After I moved to San Francisco I took part in several studies on HIV; after I began taking meds I was involved in clinical trials, including one for the first protease inhibitor drug. The protease inhibitors are that class of drugs which, more than anything, have reduced the death toll for those already infected. The last trial I was in failed; the drug (not a protease inhibitor) proved too toxic for use as a treatment for HIV but is now used at a lower does to treat people with chronic Hepatitis C. I've taken part in several AIDS Walks.
After hearing for several years about the California AIDS Ride, a charity bike ride from San Francisco to LA, I rode for the first time in 1999 and have participated every year since then, with the exception of 2002. Next year's AIDS/LifeCycle 10 will be my thirteenth ride (twelve in California, one elsewhere). Since beginning my participation in these rides I've been a member of Positive Pedalers, a group of cyclists, men and women, gay and straight, who do rides like ALC and are living with HIV. The quote from Nelson Mandela which I used at the beginning of this diary appears on this year's version of tee-shirt that is given to our members and on the jerseys we wore in this year's ride. As Mr. Mandela has said, nothing undermines stigma like visibility and openness.
I've always liked to ride a bicycle but I never realized quite how much I enjoyed it until I began riding for AIDS. When I started training for my first ride, I also began commuting to and from work by bike. Fortunately my ride is long enough for a good, quick cardio workout and short enough that I don't need a shower when I arrive at my office. Also fortunately, San Francisco is an extremely bike-friendly city. I am in bike lanes almost all the way to and from work and San Francisco drivers (regardless of their shortcomings, which are numerous) generally are very good at sharing the road with cyclists. At least they know how to deal with us two-wheelers even if they don't always seem to like us.
I certainly never realized how far one could go on a bike; I was so amazed at being able to go all the way from San Francisco to LA that, after my first year of riding I decided to join the group of those who lead official training rides. I've been a training ride leader ever since.
There will be 2,500 riders and about 500 crew members on next year's AIDS/LifeCycle. The ride takes a week and covers approximately 545 miles (give or take; the route varies a bit every year). All riders have to raise a minimum of $3,000. My goal is to raise $7,500. Getting there will be a tough haul this time. It seems as though every time I turn around I encounter a prior donor who has decided to ride this coming year. As a matter of principal I don't solicit funds from other participants; like me, they'll be sweating for a week, it doesn't seem right to ask them for donations since they'll already be giving time and energy. To be honest I hate asking ANYONE for donations, but...well...someone's gotta do it, right? Small donation, large donation...any donation is good. And naturally I realize it's simply not a possibility for some folks. But give if you can. The link is right here. Incentives are involved if I raise $1,000 by the end of the day today (I managed to cross that line yesterday by just a few dollars), $1,500 by December 31, or $5,000 by next June 4th (the day before my ride begins). Incentives are nice to receive though I don't ride do this to get them. I ride because it's important to raise money, I ride because it's a great way to deal with and to honor the losses I and others have experienced over the past 30 years, because being visible as someone living with HIV is a great way to fight stigma, and because the ride is one long AIDS-awareness exhibit. Apart from that, it's also a truly wonderful and enjoyable experience.
Next year's ride will begin on June 5, thirty years to the day since the first published reports of what would come to be known as AIDS. That date is generally used to define the official beginning of the AIDS pandemic. As was the case five years ago, when the ride also coincided with the anniversary of the epidemic's beginning, I'm assuming there will be some sort of important stuff going on to commemorate the date.
A member of the AIDS/LifeCycle community decided a few years ago to have commemorative bike rides every year on or around World AIDS Day, riding a mile for each year of the epidemic. There have been rides in various places since then. This past Sunday, Positive Pedalers organized a thirty-mile bike ride in San Francisco. About a hundred of us took part. We rode past the UCSF Main Campus, site of much early research on AIDS, and the SF State University campus, site of one of the first AIDS support groups. From there we headed to several of the neighborhoods most affected by AIDS in the City--Bayview/Hunters Point, the Mission District, and of course the Castro and then we returned to Golden Gate Park to visit the AIDS Memorial Grove. I posted some photos in Monday's substitute C&J but it seems only appropriate to end with them here.
The year after Mario died, when the Grove was still new and relatively undeveloped, his niece, her girlfriend and I took a portion of his ashes there on what would have been his 42nd birthday and (as he'd asked us to do) scattered them somewhere in this general vicinity:
Here's a photo of Mario:
There will be a ceremony at the Grove today at noon. Work will keep me from attending but I will be there in spirit.