If the 50 years since Stonewall has ultimately been about social and legal progress for L.G.B.T.Q. people, it has also been about one of the most devastating and, at first, mysterious medical events of modern times: The AIDS epidemic.
While history now tells us that H.I.V., the virus that causes AIDS, probably made its move to humans from chimpanzees in central Africa in the early 1900s, its arrival in the United States in the 1980s brought to the public consciousness a disease that has so far killed more than 35 million people worldwide.
A panoply of drugs in recent years has allowed some people with H.I.V. to have almost the same life expectancy as the general population.
But perhaps even more striking has been the development of a drug known as PrEP, for pre-exposure prophylaxis. It enables anyone at risk of contracting H.I.V. — through unprotected sex, for example — to ward off the virus by taking a daily pill.
Still, after so many years of research, only two people have been considered cured of H.I.V.
But the method — the destruction of their immune systems followed by bone-marrow transplants — is so dangerous and expensive that it cannot be used on typical H.I.V. patients. Both men were chosen only because they were already dying of leukemia or lymphoma and the life-threatening bone-marrow transplants were their only hope.
[ PrEP is a potential solution to the AIDS epidemic. But not everyone who needs it has access to it. ]
Although the intense public attention to and panic over AIDS, the late and usually fatal stage of H.I.V. infection, have subsided since those earlier days, the scientific and medical focus remains, along with efforts to reduce the social stigma of the disease.
Dr. Demetre Daskalakis, deputy commissioner for the Division of Disease Control of the New York City Department of Health and Mental Hygiene, is among those trying to rewrite the AIDS narrative.
During his tenure, New York City has succeeded in lowering H.I.V. transmission rates, rolling out PrEP and rebranding the city’s STD (for sexually transmitted disease) Clinics as Sexual Health Clinics.
Dr. D., as he is known to his social media following, exemplifies the shifting paradigms around sexual and gender minority health. He has advocated a disease prevention strategy that attempts to remove the stigma associated with H.I.V. and AIDS.
Numbers show progress. Last year, the Health Department announced that 2,157 New Yorkers had been newly diagnosed with H.I.V. in 2017, down 5.4 percent from 2016 and down 64 percent from 2001 when H.I.V. case reporting began in New York State.
The number of young people newly diagnosed with H.I.V. in New York City continues to decline, too; in 2017, 427 13- to 24-year-olds were newly diagnosed, down 35 percent from 2001.
In 2017, 38,739 people received an H.I.V. diagnosis in the United States, according to the Centers for Disease Control, down slightly from the diagnoses each year between 2012 and 2016, when the number remained stable around 40,000.
In an interview, Dr. Daskalakis shared the philosophy behind his strategy and where today’s efforts to end the epidemic are focused. His answers have been edited and condensed.
What do you think is the greatest misconception about H.I.V. today?
That it’s over. It’s only over for some people. There are some populations that have really benefited a lot by having a high level of access and education. And there are other populations that live in a deep zone of stigma that we really are working hard against.
How do you think the legacy of AIDS as a gay man’s disease affects your efforts to destigmatize it?
There’s good things and bad things. H.I.V. has a history, at least in the United States, of being a gay white man’s disease. It’s not. And so we have a legacy of shaking that off. Ownership of this disease now goes beyond the initial population that — at least in the portrayal of the story — was most affected by it.
The reality is, it’s always been a disease of race and poverty. And it’s just that some of the louder voices at the beginning were white gay men. So I think we still need to work against that. But historically, having powerful voices and strategies that focus on communities at risk, in a way that respects their experience, has been critical in shifting the story.
An AIDS demonstration at Trinity Church in New York in 1987.CreditJohn Sotomayor/The New York Times
So whose epidemic is H.I.V.?
The easy answer is that it’s everyone’s epidemic. But I think the harder answer is that it’s an epidemic of folks who are, unfortunately, already stigmatized in the community. When you look at our numbers, 91 percent of the women who get diagnosed with H.I.V. in New York City are black and Latina and older. They’re not young, gay men, or men who have sex with men (known as M.S.M. in medical and scientific jargon). A lot of the MSM who are getting diagnosed are black and Latino too.
We’re working against a universe of stigma that is an intersection of racism, sexism and homophobia.
In the epidemic’s early days, public health authorities used harsh and sometimes controversial measures to stop the epidemic, such as closing gay bathhouses. Times have changed, and the science has changed. What do you see as your role in this new historical narrative?
I think that’s why I’m here. I think that the reason that I was hired, the reason that I was made the assistant commissioner of H.I.V., was because my perspective was a very community perspective. What I promised to do coming here was to shift the narrative from fear and intimidation to support of the community to control its own story. So everything that’s happened revolves around this concept: rather than scaring people from disease, we were going to ease them into health.
“High-risk people” and “high-risk sex” have been deleted from the lexicon. Because it’s about there being a respect for pleasure, and also the knowledge and mechanisms you can use to prevent H.I.V. Rather than focus on fear, we wanted to focus on finding people where they are. We’re not going to say that you’re not supposed to have a pleasurable sex life. Because that’s inherently homophobic. Instead, we were, like, use condoms as much as you can. And if you can’t, we’ve got other stuff.
What is your response to AIDS activists who said your work with PrEP was undoing their hard work promoting the use of condoms, which not only protect against H.I.V. but also against other sexually transmitted diseases?
I had a lot of responses. One of them was that the technology speaks for itself. The guiding principle for launching PrEP is science. Right? I mean that would be like saying, we have an H.I.V. vaccine now, and we’re not going to give it because someone may have condom-less sex and maybe they’ll get syphilis. Well, you don’t hold one infection hostage for another infection.
If this were 1984, and they told you that there was a pill that could prevent H.I.V., you best believe you would have been first in line. Right? And you’d be advocating for it to be out immediately.
What do you think the impact of H.I.V. has been on queer culture?
L.G.B.T.Q. health in some ways was born out of H.I.V. There were people who were focused on the health of gay, lesbian, bisexual and transgender people before AIDS. But there wasn’t the same support. The stuff that has emerged over years, including some of the trans health stuff, now has, thank goodness, split off completely from H.I.V. and has a life of its own, which is fabulous.
Stonewall and the arrival of the H.I.V. epidemic happened over a decade apart, but what do you think the 50th anniversary of Stonewall means for the epidemic?
It’s so critical that you had an uprising and it became not just folks being downtrodden by their system but actually then fighting back. I feel that the fighting spirit now is like the Act Up experience in New York. There was a feeling that it was part of L.G.B.T.Q. rights to ask for faster, better support and funding to fight H.I.V.
What do you think the legacy of that activism is today?
Folks really are using that same “health care is a right” strategy for all of the H.I.V. prevention efforts.
When there’s something going on in the H.I.V. space, they come to me before I go to them because they are connected, either to the science or the politics or both.
So I think that legacy of activism remains powerful decades later.
What do you hope your legacy is?
It’s the status-neutral idea.
If you do it right, the H.I.V. status of someone is less important. What’s more important is: How do you provide the service to the person to optimize their health?
What I do every day is make sure that people get the right service so they stay engaged in treatment or prevention. And if we do that, then their status matters less, because you’re just doing the right service for people.
Do you ever worry that the next generation won’t know what H.I.V. and AIDS meant to you and your generation?
They don’t need to relive the pain. That’s actually something [AIDS researcher and activist] Mark Harrington said. Just because his generation and mine had to live through the battle days, doesn’t mean that you had to live through the battle days to do good work.
Do I think that people will eventually, if we do this right, forget about H.I.V.? I hope so. But I don’t think that’s going to happen anytime soon.
