I officially joined Daily Kos in July of 2006. Ever since then I’ve posted at least one story per year about my participation in AIDS/LifeCycle, a charity bike ride that raises money for the San Francisco AIDS Foundation and the Los Angeles LGBT Center’s Jeffrey Goodman Clinic, for the purpose of providing treatment and prevention services aimed at ending the spread of HIV. Most years I’ve tended to publish those stories on or around my birthday if for no other reason than that the ride generally starts just over a week following said birthday. I turned 70 a couple of years ago and the story I published in that particular birthday did really well even though in 2021 due to COVID the ride had to be replaced by a substitute event that involved cycling locally after setting a mileage goal and riding individually or with friends rather than as an organized group from San Francisco to Los Angeles. I guess turning 70 was the charm, plus using Simon and Garfunkel lyrics as a framing device. Last year’s post worked fairly well too. Sometimes I get a fair bit of positive attention (whether accompanied by donations or not) will in other years these posts have pretty much been ignored. There seems actually to be little connection with anything I can pinpoint.
So let’s see how this year’s story fares, below the fold.
I apologize in advance; I’ve done my best to keep it fairly short but that turned out to be a challenge. So it’s as short as it’s going to get. Today I turn 72. By my estimate I’ve been living with HIV, knowingly or not, since the very end of 1980. I tested positive in 1985, the first person I knew of to have been tested for it since that test had become available only weeks earlier. In 2010 I published this story in which I explained how I came to establish that time frame with some degree of confidence. I’ve been HIV-positive longer than virtually anyone I know though I do know three or four folks who have been positive longer and a couple who were infected around the same time as I was. My guess is that about 95% of the people who contracted HIV when I did have passed away. But “officially” the AIDS pandemic began on June 5th, 1981, about a week after my 30th birthday, the day the CDC’s Morbidity and Mortality Weekly Report (MMWR) included an item reporting…
In the period October 1980-May 1981, 5 young men, all active homosexuals,were treated for biopsy-confirmed Pneumocystis carinii pneumonia at 3 different hospitals in Los Angeles, California. Two of the patients died. All 5patients had laboratory-confirmed previous or current cytomegalovirus (CMV)infection and candidal mucosal infection.
The men ranged in age from 29 to 36 years old. The report noted that these three conditions were normally found only in people with severely compromised immune systems. Four weeks later a second MMWR report began:
During the past 30 months, Kaposi's sarcoma (KS), an uncommonly reported malignancy in the United States, has been diagnosed in 26 homosexual men (20 in New York City [NYC ]; 6 in California). The 26 patients range in age from 26-51 years (mean 39 years). Eight of these patients died (7 in NYC, 1 in California)—all 8 within 24 months after KS was diagnosed. The diagnoses in all 26 cases were based on histopathological examination of skin lesions, lymph nodes, or tumor in other organs. Twenty-five of the 26 patients were white, 1 was black.
That second report made its way into the New York Times over the July 4th weekend. The Times article appears in the opening scene of the 1989 movie “Longtime Companion” a movie that is absolutely worth seeing even now. Meanwhile KS became the first public defining feature of the person with AIDS.
AIDS has therefore been with us officially for at least 42 years; in fact there is suspicion that it may have been circulating in the gay community in the US from the early or mid-1970s onward since it was ultimately established that in the absence of effective treatment the mean interval from infection to “full-blown” AIDS, usually described as the presence of one or more opportunistic infections found only in the immune-compromised, is eleven years.
Thus far there is neither a cure nor an effective vaccine though there are clinical trials of vaccines going on right now. When COVID came along there were some comparisons made between the two illnesses. The are two important differences between the two diseases. Despite the horrific number of deaths from COVID, the great majority of those who contract COVID recover and pretty much everyone clears the virus from their system within a couple of weeks. With HIV virtually nobody clears the infection; HIV instead lays dormant in the blood or lymphatic system or in various organs. And until the advent of effective treatments the great majority of those who contracted HIV died from it. Those rare cases in which patients appear to have completely cleared HIV infection all involve treatment for various forms of cancer using stem cells. Those treatments incidentally seem to “cure” HIV but in ways that are very specific to each individual.
I was infected with HIV at the end of 1980; I went on HIV medication for the first time in 1991. Early in 1987 I started tracking my “numbers” (CD-4 and CD-8 cells, the ratio between the two and the percentage of CD-4 cells in relation to all lymphocytes). Normal CD-4 is now known to range from 490 to 1740 cells/uL, CD-8 from 180 to 1170 cells/uL, CD-4 percentage from 30 to 61 and CD-4/CD-8 ratio from 0.86 to 5.00. After being stable from the first few years the numbers began to slip. My CD-4 count went down to 370 while the CD-4 percentage was down to 11%. Those were the biggies, though my CD-8 number skyrocketed. That sort of skewed the percentage. In was thought at the time that the CD-4 cells promoted immune response while CD-8 cells suppressed immune response. Since then it’s been determined that the interaction between the two is more complex and that having a high CD-8 number can actually represent a backup to the CD-4 cells. Still based on what was known at the time I finally succumbed to pressure from my doctor go to on the only drug available at the time, AZT. I was lucky to have waited. The first patients to have been put on AZT were incredibly over-medicated as well as already being seriously immune compromised. By 1991 things had shifted. So I never had any real problem with AZT. Still it was a wake-up call for me. In 1994 I entered a study for one of the first protease inhibitors and took one or another of those drugs until 1999 when I was taken off what at the time was considered the more effective one, a drug called Crixivan, due to various non-life-threatening but distinctly unpleasant side effects. Since then I’ve taken various new HIV meds and some older ones. In 2012 one such medication caused me serious kidney damage and I had to off of that in a hurry. There have been replacements since then and my numbers are, as they say, stable.
Meanwhile what is today called “viral load,” a measure of the amount of viral particles present in the blood, came along only in the mid- to late-1990s. The test has improved greatly over the years. The result is expressed as viral copies per milliliter of blood. From 10,000 copies in 1995 when that test first became available the “undetectable” level is now measured at under 20 copies per mL and likely will soon go lower. That number has proven to be important. Because a person with an undetectable viral load is not going to transmit HIV to another person via unprotected sex. “Undetectable = untransmittable” (or “U=U”).
I continue to participate in AIDS/LifeCycle because the purpose of the two beneficiaries is to provide prevention and treatment services, both HIV testing and STI testing, access to medications and treatment for conditions that could exacerbate HIV or make people who don’t have HIV more susceptible to contracting it, keeping those who have HIV “undetectable,” plus social work, counseling, substance abuse treatment and mental health care. On the face of things it just looks like a low- or no-cost health clinic but the prevention work is actually more complex because it provides outreach to marginalized communities, including gay/bi men, injection drug users, people of color, sex workers, and transgender women, as well as older gay men who are at this point in their lives losing their circle of friends simply due to aging, all of whom are also more likely to come into contact with HIV. Getting people who may be isolated and reluctant to access healthcare is another aspect of services provided by both organizations, as is advocacy work on behalf of marginalized communities generally, combating homophobia and transphobia, racism, and xenophobia, along with the stigma still, after all this time, facing those who, like me, live with HIV.
Apart from the obvious “this is a worthy cause that I care about” reason for continuing to push myself up and down hills on a bike for a week while asking for money, there is the equally obvious consideration that I’m a long-time survivor who at this point has lost a couple of hundred friends to the ravages of HIV and AIDS. Recently a number of my friends, long-time survivors like me, have passed away unexpectedly due to conditions that affect older people generally such as strokes and heart attacks, but even there there is a connection with HIV since having HIV long-term increases the risk of such things as well as diabetes, hypertension, kidney disease and some forms of cancer. As you can see I have a personal, somewhat selfish reason.
So. I’ve set my goal for this year at $15,000. To date I’ve raised $13,692. That’s not a bad place to be. But of course I want to close that gap. Once I post this story I’ll also link it to Facebook. If you want to make a donation, which I hope you will, you can go here. I have until the morning of June 3rd to reach that goal. I’ve committed myself to raising the bar if I achieve $15,000 sooner than that.
Thanks for taking the time to read this far. The music at the top is a song that was at one time used for “ride out” at the beginning of Day 1. Since then there have been others, some of them very good, but that one I think was a great match. To finish off I’m re-posting a video of myself, shot in 2016 when I was about to go on Medicare. I was lucky to have been chosen to be one of the people representing the ride to the media. I did well that year, and once previously. I’ve always said that the best thing about the video is that made it seem as though I was making sense. I look the same today, only older.
Edit: By the day, I forgot to mention that including 2020, when the ride was canceled because of COVID, and 2021, when there was a substitute event...and 2006 when I broke my collarbone a month before the ride and was given the position of photographer’s assistant, this year will be my 24th participating in AIDS/LifeCycle or its predecessor the California AIDS Ride. Last weekend my cumulative fundraising passed the $200,000 mark.