Today is HIV Long-Term Survivors Day. June 5 was chosen because it was the date of the CDC publication that reported the first five cases of PCP in young gay men. The article appeared inside the publication, not on the cover as shown in the images. It would have been too controversial to lead with a story about gay men.
I worked with the article’s author, Dr. Michael Gottlieb, where he talked about these five guys like they were real people—not just statistics. I remember him saying that one looked like Billy Idol, wearing a leather motorcycle jacket and hair bleached into a big white pompador. Another raised big tropical birds, like macaws and cockatoos.
This is the legacy of us long-term survivors: we are the witness to a global pandemic, when we were afraid because there was no known cause, no treatment, and no way to test for it. It appeard in one person, and then another. They got sick, then died horrific deaths.
We were witness to the spead of HIV, the slow advancements in identifying the cause, creating a test, and the first failed attempts at controlling it. We volunteered as guinea pigs for these failed drugs, because there were no other options. We also bring something absent from the statistics and the test tubes. We remember the humanity.
These are not just memories of our friends gasping for air with fear on their dark, sunken faces. We still recite their poetry, we still laugh at their biting wit, we remember them on the dance floor, gracefully leaping into the air.
There are no rules on who can claim to be a long-term survivor, but here are a few that people have used:
1 Those who have been living with HIV for ten or more years
2 Those who were positive before effective ARVs became available in their country
3 Lifetime survivors—those born HIV
4 And our negative allies whose hearts bear the scars of caring for their friends and lovers who were living with AIDS
To all of you—this is your day ❤️