It was 1981 in New York City. A group of 80 men was gathered in Larry Kramer’s room, determined to tackle a problem that was destroying their community: HIV/AIDS.
It wasn’t called that back then, but rather, a “rare cancer” that would later vilify gay men as it was renamed gay-related immune deficiency (GRID). Gay men were falling ill and dying in droves faster than any doctor could treat or chaplain could pray over. So a hat went around the room in Kramer’s home and $7,000 was raised.
The next year, 1982, the group of soldiers in the war against the mystery illness would become the Gay Men’s Health Crisis. Now, 35 years later, HIV/AIDS is no longer the death sentence it once was.
“We educated the public, we gave people good and accurate information that helped to dispel some fear,” said Kelsey Louie, the CEO at GMHC. “I think the antidote to fear is accurate information so people learn how to protect themselves, people learn the importance of getting on medication.”
In honor of the first HIV/AIDS service group’s anniversary, MIRROR talked with Louie about how far we’ve come and what we still need to do to eradicate the disease.
What programs are you most proud of at GMHC?
I’m incredibly proud of the long-standing programs that GMHC runs, like the information hotline, the Buddy Program, hot meals, vocational programming, and our HIV testing and prevention. I’m also incredibly proud of the new program that we’ve added, which is comprehensive STI testing, Hep C testing, mental health and substance abuse services, and what I’m really excited about is supportive housing.
In 35 years, what have been the biggest changes?
The biggest change is the medication and where we have come far in terms of the medical advances. The other thing that has changed is an HIV diagnosis is no longer a death sentence and people are in fact living longer. What hasn’t changed, though, is the cultural attitude toward people with HIV and AIDS and the stigma associated with having an HIV diagnosis.
Since it’s no longer a death sentence, are we seeing a growing problem of complacency?
The younger generation of today, they haven’t seen a period of time where HIV and AIDS decimated an entire community. They didn’t have all of their friends getting sick and dying. Because of that, people are, I think, maybe less worried about HIV. That affects a lot of things — that affects potential funding, that affects fundraising, that affects how often people talk about it, that affects the number of times people will mention it in terms of safer sex practices and healthcare in general.
Is it off of healthcare providers’ radar as well?
I think that, combined with stigma is allowing people to talk about it less and especially to young people. Part of our [mission], at GMHC and other organizations like ours, is to keep HIV and AIDS in the forefront of people’s minds, especially because we have statistics like the fact that there are 50,000 new HIV infections across the country every year and that number has held steady over several years. While we are making improvements in some demographics, we are going in the opposite direction in other demographics, in particular there are geographical areas in the south in the U.S. as well as age, younger people, younger gay and bisexual men of color, transgender women, those are the groups where HIV is on the rise.
HIV and AIDS don’t discriminate. HIV is not a function of who you are and what you do. Anybody who is either having sex or injecting drugs is potentially at risk.
Today, you can get rapid HIV testing at many community events and centers.
That is so critical because access to testing and testing itself is one of the first things that we need to do in order to end this epidemic. The first thing we need to do is to understand who is HIV positive and direct them and link them to quality healthcare, have them retained in healthcare, and have them achieve viral suppression.
What do you think about the public’s reception of PrEP?
PrEP hasn’t been taken up as quickly as we had hoped and I often say to people, “Could you imagine what it would have been like had we had a pill to prevent HIV in the early ‘80s? What that would have meant for HIV and AIDs?” And so when people question whether or not they should take it or is it effective — it isn’t the magic bullet, it isn’t designed to prevent everything, but studies have shown that it is effective in preventing HIV transmission.
The other reason why PrEP isn’t being taken up is there is stigma. What does it mean if you are taking PrEP? I think PrEP is facing the same thing that birth control faced. What does it mean if you’re taking birth control? It means that you’re having sex, and the stigma attached to that can be dangerous.
New York has pledged to end HIV/AIDS by 2020 in the Empire State. How optimistic are you?
A combination of anger and hope is what leads to action. And so I am 50 percent hopeful and 50 percent angry and I think the combination of that leads me to have to believe that this can get done as long as the political will is there. And when I say political will, I don’t mean a speech, I don’t mean a promise, I mean the dollars. We need action, which is the same message that the founders of GMHC were saying 35 years ago.
What can we do?
[People] can donate to GMHC, of course. They can also donate to their local HIV and AIDS organization. They can volunteer their time, and they can speak to someone that they care about about HIV and AIDS. Especially a younger person. Especially someone who is gay, bisexual or transgender.