Today is World AIDS Day. The event was created and first celebrated in 1988. In one way or another I’ve been observing it ever since. It’s also Giving Tuesday which makes discussion of non-profit charities even more timely. But I’ll be focusing on the former.
World AIDS Day is of great personal significance for me. I’m a long time survivor. In fact by my best estimate I was likely infected forty years ago...on December 5, 1980 which is this coming Saturday. Ten years ago I wrote about how I was able to establish that. In some respects it wasn’t my best piece of writing ever but if you want to know why I feel fortunate and really have been fortunate in terms of having HIV, that story will give you some idea. In addition, this Friday marks 28 years since the death of my partner Mario Luna. This week is a tough one for me and that’s part of the reason I write stories like this one.
What I typically do on World AIDS Day is write about some aspect of HIV/AIDS, whether it be some form of personal reminiscence or just observation about the status of the fight against the virus. And typically I conclude with a pitch for an AIDS Service Organization (ASO) I’ve raised lots of money for. That won’t change but the content will be topical. ASOs are crucial to controlling and containing HIV until there is a vaccine and/or a cure.
For forty years I’ve been fighting HIV. Obviously I had no idea at the time I was infected that that was happening. I assumed I had the flu; nobody knew about HIV in 1980. But once I tested positive (in 1985) I truly was fighting HIV and have been ever since. For at least the past 25 years we’ve been making progress. And for the past ten or so years we’ve been making great headway. And now...along comes this stupid SARS-CoV-2. And suddenly a good deal of that success is in jeopardy.
There is, after forty years, no vaccine to prevent the spread of HIV. In the absence of such a breakthrough (and that particular branch of research has been going on probably since the late 1980s without success thus far; HIV and SARS-CoV-2 are very different viruses) we have still managed to turn a positive HIV test from a death sentence to something that can, for the most part, be dealt with as a manageable disease provided certain other conditions obtain. Some of that involves medication, regular blood tests and follow-ups. On the flip side we have getting more and more successful in preventing new infections. Some of that involves a social approach—the promotion of safe sex and condom use early on—and nowadays a medical component: First there was Post-Exposure Prophylaxis, or PEP, Pre-Exposure Prophylaxis, or PrEP, and then Treatment as Prevention (TAP). The current expression is “Undetectable = Untransmittable” or “U=U.”
With PEP people who believe they have been exposed to HIV can, if they act quickly, generally within 72, get a prescription for one HIV medication and take that for 28 days. It works pretty well. PrEP works even better; people who are at higher risk of contracting HIV through unprotected sex take an HIV medication daily at a lower dose than is required to treat active infection. And then there is TAP. A person with a viral load below a certain level is considered to be undetectable, meaning that a sensitive blood test will not show signs of HIV in the blood. That is not a cure; it is extreme suppression. The virus is still around but at extremely low levels. Extensive research has shown that people with undetectable viral loads will not transmit HIV over 99% of the time. I’ll note here just because it’s relevant that even with a very low viral level HIV continues to have effects on the body simply because it represents low-level but constant inflammation. There is evidence that long-term HIV infection causes people like me to age more rapidly than we otherwise would. I’m currently enrolled in a study on long-term infection and its potential to cause cognitive deficits.
The strategy behind combating HIV in the absence of a vaccine consists of two parts: prevention and treatment. Prevention involves promoting and providing for regular HIV testing for people at risk of contracting HIV. In the US the at-risk population consists of men who have sex with men as well as IV drug users. It also includes promoting and providing PEP and PrEP and condom usage; in addition it includes addressing ancillary circumstances: general STI infection, substance abuse, mental illness, homelessness, racism, sexism, transphobia, xenophobia and HIV-related stigma. Worldwide it should be noted that the overwhelming majority of people living with HIV would accurately be described as heterosexual. In that sense the US (and I believe Western Europe as well) is somewhat of an outlier. This sadly empowers the homophobes in our midst to continue portraying HIV as a “gay disease” and thus as “God’s punishment for being gay.” Which is complete nonsense but it’s still the reason why many ASO’s include advocacy as part of their core mission.
For those with HIV the treatment aspect of combating HIV includes access to medication as well as continued monitoring of the immune system and of viral load. Not to mention the same additional factors faced by marginalized, high risk groups where prevention efforts are focused.
A great deal of the heavy lifting for both arms of the strategy for addressing HIV is done by ASOs, usually in conjunction with local public health agencies. Much of the work has to be done in person. And that’s why, apart from the drop in donations, ASOs are struggling right now. There is the issue of protecting clients and staff from inadvertent exposure to COVID-19. There is the issue of making sure clients know they can receive services safely. There is the issue that some services simply cannot be delivered safely right now. For example any sort of support group would have to be done virtually. And while the technology for doing that is relatively affordable for the organizations it may not be that affordable for clients. In-patient substance abuse treatment can’t be delivered virtually. It can be done but it is much more difficult; there are occupancy restrictions far more stringent than would be the case under normal circumstances. And finally people who’d otherwise be clamoring for services are afraid to show up. The very sorts of vulnerable people whose only option is to receive care from ASOs are often isolated, not always well-informed, often have underlying risk factors which make them more prone to stay at home by themselves. People don’t show up to get tested for HIV, to get bloodwork done, to get counseled on PrEP, to pick up prescriptions for HIV medications, for social worker appointments, and so on.
Although it's probably too soon to see how COVID-19 is affecting the rate of new HIV infections, given the obstacles to access for prevention and treatment as well as the catastrophic decline in contributions (not to mention grants from state and local governments which have been in some cases entirely diverted to combat COVID-19) it would be a surprise if there wasn’t an increase. About the only possible mitigating factor is that because of the need to remain safe and socially-isolated I would venture to guess that there is less casual and anonymous sex happening nowadays than there was nine months ago. Less, but not none at all.
Since 1999 I have personally raised over $150,000 for the San Francisco AIDS Foundation by participating first in the California AIDS Ride (CAR) and then in AIDS/LifeCycle (ALC). I’ve ridden a bike one hell of a lot of miles in the past 21 years, all of it for the cause of fighting HIV/AIDS. This year’s AIDS/LifeCycle ride (normally the first week in June) was canceled back in March. For a time there was hope for a 2021 ride but by the middle of September that no longer seemed like a prudent idea even despite rising hopes for effective vaccines. Instead the San Francisco AIDS Foundation and the Los Angeles LGBT Center who created both CAR and ALC, have launched an event called TogetheRide. ALC involved training all year to ride a bike seven days in a row at the beginning of June; and committing to raise at least $3,000 for the right to ride. Rather than do that, TogetheRide doesn’t require a commitment to much of anything. Instead the goal is for participants to collectively bike 1.2 million miles between now and the end of June and to do it any way that works for them, including counting workouts, walks, indoor rides, Peleton, what have you. We make a fundraising pledge as well but it is aspirational rather than mandatory. Since there is no actual event to participate in even minors are allowed to take part with parental permission (with an actual ride that wouldn’t be possible).
So this year I’ve made two commitments: to ride my bike at least 2,000 between...well actually October 23rd...and the end of June. That represents an average of the miles I’ve ridden to train for ALC. In all probability I’ll end up raising that goal. I’ve also committed to raising $12,000 which would a) represent 1% of the 1.2 million miles to be ridden and of the 1.2 million people living with HIV in the US (including myself and any number of my friends). That goal represents approximately what I raised for the 2020 edition of ALC. I raised more the year before but as has been the case generally when it comes to fundraising for non-profits COVID greatly decreased what I was able to raise. There aren’t any penalties if I don’t reach either goal. As of now I’ve raised $2,754 which oddly puts me near the top of the fundraiser list. Not that I’m bragging. I find it very sad actually. I shouldn’t be anywhere near that high on the list. COVID has changed things considerably.
I’d love for you who are reading, if you’re able, to make a donation to my own fundraising campaign for TogetheRide.
So on this World AIDS Day my appeal is for donations to the AIDS Services Organization of your choice. amFAR’s website includes a pretty comprehensive, pretty much comprehensive and up-to-date listing of ASOs.
Pick one, pick two, pick more than two. ANY donation to an organization engaged in the fight against HIV/AIDS, regardless of the recipient, is a very good thing.
I’ll leave you with this video which the ALC staff produced in 2016 when I was designated one of the media representatives for the event. I guess this is where I out myself as an older dude.