AIDS activist and health researcher stays influential

Spencer Cox, a longtime AIDS activist who now works on health issues through his Medius Institute, thinks gay men can now talk about health problems, including addiction and depression, without worrying about whether it is bad PR.

BY Christopher Murray

Spencer Cox founded the Medius Institute in 2005. A one-man think tank on issues related to gay men’s health and wellness, he has produced a series of well-reasoned, sensible policy papers on challenges facing queer men after 25 years of coping with AIDS. The papers are designed to act as prods to research and program development and to cut away some of the bureaucratic sludge that has come to bog down institutions created to serve gay men, their health, and their fight against HIV.

At 38, Cox is at the young end of a generation that lost many to AIDS. He cut his teeth on AIDS activism as an early member of ACT UP and a leader in the group’s Treatment & Data Committee. His work became increasingly professionalized when he served as both director of the Antivirals Project and communications director at the Treatment Action Group, an AIDS research and advocacy organization, from 1994 through 2000.

Originally from Atlanta, Cox now lives in, as he calls it, “newly-chic” Hell’s Kitchen. To access the Medius Institute’s most recent report, “The Legacy of the Past: Gay Men in Mid-Life and the Impact of HIV/AIDS,” go to http://www.mediusinstitute.org.

CHRISTOPHER MURRAY: Why did you start the Medius Institute and what does Medius mean anyway?

SPENCER COX: I spent 2004 watching a huge number of the people closest to me get into trouble with meth, getting HIV, and other stuff like that. My background is AIDS research advocacy, so I went to the scientific literature and asked, ‘Okay, what do we know about why this is happening?’ And I found a lot more questions than answers. The organizations that were supposed to be doing something weren’t doing very much.

So I founded the Medius Institute to push for new priorities and new approaches to gay men’s health. “Medius” is a form of the Latin word for “middle.” For me, it’s the idea that health isn’t about living on the edge, but about achieving balance in our physical, emotional, and spiritual lives.

CM: Are gay men any more messed up now than they’ve ever been?

SC: I wouldn’t put it that way, but we need to recognize the magnitude of what we lived through with the AIDS epidemic. After the attacks on the World Trade Center, for instance, there was immediate recognition that pretty much all of New York had been traumatized, and that we needed research and services to deal with that. But a lot of gay men across the country lived for decades with an epidemic that killed hundreds of thousands of their friends and family members, and almost nothing has been done to understand or address the problems that created.

The epidemic interrupted the process of building a community infrastructure that is responsive to our non-HIV related needs. Now that we have effective anti-HIV treatments, we have the luxury of focusing on rebuilding our community and deciding what we want from it.

CM: How are we still living out the precept that we all live unhappily ever after, alone, as drunks or suicides? Is that story completely discredited now?

SC: Interestingly, the progress we’ve made allows us to address things like depression and alcoholism without worrying about that question. We have the social power to not see ourselves as the aging gay man sitting alone in a bar with his third martini humming along to Judy Garland singing “The Man That Got Away.” And that power lets us talk about real problems like alcoholism and depression and loneliness without worrying about whether or not it’s good public relations.

CM: How are gay men succeeding more than they have before?

SC: After the past 25 years, I think the fact that we’re still standing is an enormous success. And in spite of everything, we’ve continued to start new businesses, to write new books and create new software programs, to fall in love, to adopt children, and to insist over and over again that we not be treated as second-class citizens.

I listen to young gay men today, and so many of them are out in high school, and have supportive parents, and are fully integrated with their straight friends, and I’m just amazed at how far we’ve come. We still have a long way to go, but we’re moving faster than I ever thought possible.

CM: Are there trends in common between gay men and lesbians? What about bisexuals and trans folk?

SC: There absolutely are. In terms of health, smoking, for example, is common among all of these groups. There are a number of mental health challenges that are pretty much common among queer folks. But I think that, in order to address these problems effectively, it’s important to be specific.

So many of our health problems are behavioral, and those behaviors are rooted in the specifics of our lives, in the choices that we perceive to be available to us. And those things can be very different in different groups of people. I chose to focus on gay men because that’s the group I know best.

CM: You’ve written a lot about the challenges of urban gay men at mid-life after 25 years of AIDS. This sounds a lot like you. Are your life and challenges and those of your friends the model for your advocacy?

SC: Totally. That’s what I learned from my AIDS work. Just looking at and listening to the people around you can tell you a lot of important things long before it shows up in the “official” statistics and studies. I’m a big believer in science, and I use the scientific literature a lot, but I find that research makes a lot more sense when you understand what these data mean in real people’s lives.

For instance, anyone watching New York’s gay men in action saw the crystal meth epidemic coming a long time before it made it to the official radar screens. Also, science can only tell you so much about the why of this stuff. At some point, you have to sit down with people and ask, “Why do you use? What’s this giving you?” I try to understand how big public health issues, community norms, and individual choices come together.

CM: Your work is a spur to research and the development of new models by community-based organizations and public health entities like the city department of health. Do you think these groups are doing what they should be?

SC: The short answer is no. A lot of the AIDS organizations, for example, only stop by our neighborhoods when they’ve got their hands stretched out for a donation. It speaks volumes that the first anti-meth programs in Chelsea were created and funded by concerned individuals.

But it’s also important to say that nobody really knows how to do what we need to do. In the early days of AIDS, we could make a big difference by simply explaining to people how the virus was transmitted, and what they should do to avoid getting it. Now, though, most of the health problems we face are like smoking. People know smoking is bad, but too many people still smoke.

So how do we change those behaviors? What other kinds of health concerns should we be worried about? The Medius Institute is trying to answer those kinds of questions.

CM: You’re pretty chummy with Tom Frieden, the maverick city heath commissioner, and you publicly supported his still-in-play push to update the HIV testing laws [to end the requirement that written consent precede any HIV test and to allow the health department to share some patient data with heath-care providers.] Did you take a lot of heat for that?

SC: Surprisingly little heat, all things considered. I mean, look—getting an HIV diagnosis is difficult. Nobody’s arguing with that. But it’s not going to get any easier if you wait until you’ve also got AIDS. For one in four people with HIV in New York City, that’s exactly what’s happening, and so far, nobody other than the commissioner has come up with a plan for dealing with that.

Dr. Frieden is probably the most brilliant public health official I’ve ever seen, and certainly the most committed to gay men’s health. Generally speaking, my AIDS work taught me that if you want to change anything, it’s going to piss somebody off, so it’s a bad sign if no one gets angry.

CM: What’s one of the best things gay men and those who care about them can do to help those whose lives are tangled up in some of the pitfalls of gay life?

SC: Talk. Make friends. Say hello to strangers. When you look at why we get into trouble, it’s often related to loneliness and depression. My friends in 12-Step programs tell me that suddenly they’re part of a real community; people call every day to ask, “How are you? Feeling okay?” We don’t have to be in Crystal Meth Anonymous to pick up the phone and invite a friend out for a burger or a movie. But we don’t do it nearly often enough. And there are actually studies showing that people with strong friendship networks do better in terms of all sorts of health areas.

CM: What do you do when you aren’t saving the tribe?

SC: I was an actor back in the days when, to borrow a phrase from Christopher Durang, “Dinah Shore ruled the earth,” so I go to a lot of movies and theater. I read a lot, hang out with friends. Oh, and I’m godfather to a three-month old puppy, who I find endlessly fascinating.