Why We Still Need HIV Warriors

One of my very best friends found out he had HIV in the late 1990s. I was crushed but tried not to show it. After all, we had just watched dozens of friends, colleagues, and community leaders die of AIDS complications in the previous decade.

“Don’t worry,” he told me, “they aren’t even starting me on medication yet.” In the late 1990s, antiretrovirals were quite new and there was a school of thought, at least among some San Francisco doctors, that you held off treatment until you really needed it — lest the drug cocktails impact your body adversely the way AZT had early users.

I think now of how relieved I was to hear that from him — and how upset I’d be to hear the same response from someone today. Current treatment options for HIV are, well, miraculous compared to what they were in 1998. We now know everyone, regardless of viral load, should start on antiretroviral medication at the time of diagnosis. Indeed, with immediate treatment and persistent adherence, you can dramatically reduce HIV’s impact on your life. The idea that you can now take medication and become undetectable and unable to transmit HIV to anyone else feels like absolute liberation to my poz friends. Now that people living with HIV have so many treatment options, it can sometimes be confusing figuring out which is right for you. That’s one reason we do this annual treatment guide. In part, it’s something to take to your doctor to discuss what’s going well and what isn’t with your current treatment regimen. If you’re experiencing side effects, for example, it might be time to switch to another med (there are more options than ever, and studies prove it’s safe to change which drugs you use to treat your HIV). If something is not right, bring it up. Make your doctor listen to your needs — and if they don’t, find a new doctor.

Longtime ACT UP activist Andy Velez died in May at 80 years old. In his eulogy, Jay Blotcher said that Andy “protested like a warrior. But he added irreverence to the mix. Andy dressed in pearls and jewels for demonstrations. His naughty jokes would easily defuse a stand-off with cops. When we were thrown into jail after a protest, Andy led us all in ‘60s girl group songs. Andy’s difficult past provided the fuel for his activism. A punishing childhood. Being jailed in 1964 after homosexual entrapment. Navigating a bitter divorce. Coming out at a time when gay was synonymous with AIDS. Andy possessed life lessons that most of ACT UP didn’t.”

Andy made it to 80 years old. He wasn’t HIV-positive but thanks to him and his fellow protestors, people living with HIV today could surpass that age themselves — by decades. Heck, the oldest documented person living with HIV in the world just turned 100 (and his viral load is undetectable). You’ll need help to reach this century mark, but medication is a necessary part of that path; no person with HIV makes it to 100 without treatment.

Andy Velez represents an entire generation of women, men, and gender-nonconforming folks who survived Stonewall and the early AIDS crisis, people who helped others along their way, pushing society to where it is now (including the push to get research on HIV and bring effective treatment to market). Those young (mostly queer) people pushing for PrEP access on Capitol Hill earlier this year? They’re standing on the shoulders of guys like Andy Velez.

On the 50th anniversary of Stonewall and the 38th anniversary of the first reported cases of HIV and AIDS, I want people to remember that you need more than medicine and platitudes. You need to know your history. You need to see what paths have been trodden for you and what privileges they offer. We all need to be able to hear and amplify the voices that have been ignored, marginalized, or outright silenced, because those are often the folks (like trans women of color) whose lives have so much trauma that effective HIV treatment seems like a luxury.

More than anything, to hit that 100 mark yourself and to honor those folks who made it so you can live to 100, you need other people. So take your meds, love your family, cherish your friends, surround yourself with support, and let the haters go by the wayside (and if you can, vote them out of office). If you have no people because of HIV stigma or trauma, reach out to a support group, a community center, an HIV organization, or a sliding-scale mental health specialist. Once you find your people, you can help and protect each other, as Andy would, like a warrior.