I saw a patient recently who was diagnosed with AIDS in the 80's. This is somewhat of a rare find, because for so long throughout the 1980's and 1990's, HIV/AIDS was a death sentence. He reminisced to me of his many friends who have all died, and now he lives a fairly solitary life. His community was eradicated not only by the disease but also from the hate and stigma.
And I realized that for so many people today, the 1980's AIDS epidemic is not even a memory. The vast majority of millennials were babies when fear of AIDS was raging through the US. It seems like some vague memory rather than reality. And we have chosen to quietly let those memories slip away, and I think that's sad, because it is useful to remember sometimes what this country was capable of, both good and bad. People seem surprised by this current political climate, but it is not very surprising to me.
I remember in the early 80's people began to notice that gay people were dying at an alarming rate and at very young ages, overcome by very unusual infections. And eventually, it was discovered to be due to a new virus called AIDS. No one knew how it was spread or who had it. There was no visual test or identifiable features. The only thing people seemed to know was that it affected gay people. And so I was openly encouraged to avoid gay people, because I might catch AIDS. It's a hell of a thing to tell a 7 year old.
I remember when Ryan White became a household name, this fresh faced white boy from middle America who was labeled as an innocent victim of the AIDS epidemic, as if others had somehow deserved to get it. But Ryan cemented in my mind that it was possible for me to get AIDS as well. And everyone clutched their children a little tighter. And even with convincing evidence that AIDS was due to HIV and was only spread through blood or sexual transmission, people feared association with gay people. Homophobia was in the casual vernacular. Using "gay" casually is such a bizarre reality to me now, when for so long it was an insult. And on the opposite end of the spectrum, seeing "faggot" fall away from casual vulgarity seems odd, when for so long it was just another insult on par with "bitch" maybe. When Paula Deen admitted that she had used the N word back in the 60's, and people crucified her for it, for a moment, I had some sympathy for her, because I've called plenty of people a faggot to their face. I still use 'gay' these days, and I know the 'correct' term is LGBT(QI etc etc), but 'gay' is very much to me a great term. It was for so long a word that inspired fear and hatred and mistrust, and to see it now being used for identity and inclusion, that is good for this world.
Even with prominent heterosexuals coming out as HIV positive in the early 1990's, it was still a gay disease. I remember rumors flying that Magic Johnson was secretly gay. I also remember when he played in the all star game, and so many other players discouraged him from playing for fear of spreading the disease. And I remember Greg Louganis coming out both as gay and HIV+, and the firestorm of controversy he suffered for cutting his head but still competing at the 1988 Summer Games, a comeback performance that was so inspiring that he remains as one of only 4 Olympians from those games I still remember (Carl Lewis, Jackie Joyner-Kersee, and Flo Jo).
When the AIDS quilt project started, it was really the first time I realized that the people being diagnosed with AIDS, they were people. They had parents, lovers, children, families, friends, jobs. People longed to remember them, and when I found out that the reason the AIDS quilt was started was because so many of them went unburied or placed in unmarked graves, I realized that so many people had so much hate, and were willing to apply it indiscriminately, even if that should mean disowning your own flesh and blood.
When HIV treatment first came out in the late 1980's, I recall the restrictions and requirements. Doctors had to ration medication, and patients had to be 100% compliant with AZT therapy (zidovudine), a medication taken q4 hours ATC (around the clock). Think about that for a minute. Your survival as an HIV patient was contingent on you proving to your doctor that you took a pill 6 times a day every day.
I remember that because the AZT schedule was so restrictive, people became suspicious of any person taking medications in public. Suddenly, HIV patients had to secretly take their medications and hide the bottles. I remember that even being tested for HIV was tantamount to an admission of guilt. It was such a significant factor that regionally and nationally, laws still exist regarding consent for HIV testing. And in part because of HIV, we have HIPAA to protect the confidentiality of medical records.
I don't know what it's like to be gay, but I know the story of HIV from within my lifetime. And to let these memories fade would be a disservice to all the dead young men who suffered not only from the disease, but from society's cruelty to their plight.
