As a reporter, you sometimes find yourself with a really great interview on your hands—one with a subject who is so compelling and well-spoken that you sort of want to sit back and let their words tell the whole story for you. I had that experience last week, when I sat down with Peter DeMartino, executive director of Charlottesville’s AIDS-HIV Services Group, to talk about why the organization is integrating Hepatitis C testing into what they do. There’s more information in that story on why the CDC and the state think we need to be focusing more on that virus. But here, I wanted to let Peter’s words about his own experience with AIDS, and with finding ways to fight it in this community, speak for themselves. It’s edited down for length, but it’s just him, telling you what he wants you to know.—G.B.
“We started 27 years ago, and really were the local response to the HIV and AIDS crisis, primarily from the perspective of dealing with a population that nobody wanted to deal with, quite frankly. When you talk to our founders, you hear some horrific stories about folks coming back to Charlottesville essentially to die, and the very first people dying of AIDS showing up at places like our local hospices and our local hospitals and literally not being taken care of. Quarantine, nurses in suits, food left outside of the door, people not being bathed or being touched. it was that time in the crisis where people didn’t know. There was a lot of ignorance and a lot of fear.
“Since then, we’ve evolved as an organization, but that was really where were were coming from. Our founders were really the folks who touched people, both literally and figuratively, who were untouchable. That no one wanted to touch. And I think that’s really been a tradition. That’s really the core of our ethos, if we talk about the ontological category we fit into as a nonprofit, the who we are as a nonprofit, and why we continue to exist. Thirty years into the epidemic, why is there still an AIDS services organization in Charlottesville? The reality of it is it’s because there are still communities that people don’t want to touch. So ASG becomes the door that opens when all other doors are closed. The arms that open when no one else will open their arms.
“I came here three years ago, when the organization had been plugging along very quietly—very intentionally quietly, working in the background. We used to be in the IX building and had a back door that saw a lot more people come through it than our front door. Our front door wasn’t labeled. It was…‘No, no, I really need to go meet this client at Starbucks. I really need to go give them their meds in the parking lot at Target, because they won’t come here.’ When I got here, we did the usual executive director stuff…and I ket saying, ‘When do I get to meet clients?’ ‘You can’t.’ It was that level of secrecy, that level of stigma. So being positive myself, I was disturbed.
“Growing up as a gay man in New York, walking into a club underage at 17 and recognizing that there was no one in the bar over 30 because they were all dead—then you realize the impact that HIV and AIDS has had on the gay community overall. I really had this sense of, well, I want to be with the elders of my tribe. The folks who acted up and said no. They fought for drugs into bodies. They were the beginnings of it.
“There’s two communities in the states where, if you’re a gay man over 55, you start pining for. One is Fort Lauderdale, in Florida, and the other is Palm Springs in California. So I went to Palm Springs, and went to work for the Desert AIDS Project there. And I was with them for six years [from 2004-2010] doing this work, because I wanted to be in that older community, the folks who had been around.
“But I also found that those guys who had acted up and said no had no interest in doing it any more. They were done. They had done it, they had fought the good fight, they had got the meds.
“Not only was it disheartening that they had put down the sword professionally, but personally, they were pissed off at me. ‘We didn’t know any better. We were doctors and lawyers and architects and we got the AIDS and watched all our friends die. What the hell is your problem? You should have known better.’
“I often talk about generations. There was that first generation, that first wave. I talk about myself being second generation. I’m the generation that grew up with the CDC, ‘Safe sex is hot sex,’ and all of that. And really being of that generation that at 13 years old, when the first cases of AIDS came out, and people were making jokes about anally injected death sentence—what AIDS really stood for. As a young gay man, there was sort of that fatalistic attitude of not if, but when.
“So I was taken aback by the elders of my tribe not seeing me as part of the tribe. And then you get to a point where you spend six years at a $13-million-dollar organization with 3,600 clients and a 3.5-acre campus and 30 units of housing, and you’re like, whoa. Every day we’re open we see a new client, at least. And it’s not new diagnoses. It’s that 60-year-old guy who’s been living in Seattle or D.C. or New York or Chicago or some other major metropolitan area and has literally rolled out the map and gone, ‘I’ve been living with this for years, and I’m ready to retire. Where can I go and be in a community that’s open and accepting, and also someplace I can receive services?’
“We’d become this mecca, this odd Disneyland of people with HIV. It got to a point where I started thinking about ‘Why am I doing this work still?’ I used to go these national conferences, because I worked with federal advocacy, and there was a lot of anger in the community too, and such a different perspective on what HIV and AIDS was in different places. ‘San Francisco? Palm Springs? Pff. What do you know about what our real problems are.’ And I kept hearing about the West Coast epidemic versus the East Coast epidemic—the West Coast being white, gay men, and the East Coast being African-American women. And there was this transition from first-generation to second-generation to what I sometimes talk about as third-generation. It wasn’t hitting a population in the same way.
“I often say HIV is the symptom, not the disease. When you look at the populations being affected, and you look at the individuals who walk through our doors, yes, it’s the HIV that brings them in, whether they’re living with it, affected by it, or at risk for it. It’s the fear of HIV, it’s the disease that brings them in the door. But it’s probably fifth or sixth on their list of general needs. And their hierarchy of needs is housing, childcare, transportation, a job. And if you look beneath that, there’s homelessness, substance abuse, the mental health and HIV connection. And if you look beneath that, what we’re really talking about is social justice. We’re still talking about populations that no one wants to touch, and issues that no one wants to talk about.
“Because what’s putting people at risk for HIV is not so much the practices, because the practices are just manifestations of this deeper homophobia, this deeper sexism, this deeper racism, this deeper socioeconomic disparity. So when we talk about who I am in this organization, who this organization is, I think we’re about social justice. We’re about the fact that, yes, HIV and AIDS is, 20-some years ago, what we rose up to deal with, to fight against, to address, but what we were really addressing was that there are people who are experiencing such intense disparities that there is now a disease that seems to be targeting them. And how do we address all of the issues that are making them susceptible to this?
“This is why, three years ago, we started on this major change to the organization. We started realizing these conversations about condoms, about keeping each other safe, we needed to ramp them up. We needed to approach this in a very different way. Three years ago, we really started becoming a behavioral health center, really started talking about recovery, [about] undiagnosed or untreated mental illness.
“To be honest, when I came here, I was like ‘I’m the change agent. I’m here to shut this baby down.’ There are, what, 750 nonprofits in Charlottesville? We’re in the shadow of a world-class research institution. What the hell are we doing? How are we going to move the needle?
“And in six months, what I recognized is if we shut our doors, what this community loses is cultural competency. This community loses the door that opens. When you look at studies that say seven out of 10 gay men are not telling their primary care physician that they’re gay, how are they getting appropriate health care? …That’s when we started talking about how this is much more a behavioral health issue. How do we integrated access to care?
“It might not be people dying in bed unwashed and unfed because people are afraid of their HIV. But now it’s transgendered individuals. Now it’s African-American women who have never felt like they had the right to appropriate care. So that’s who we are as an organization. And that’s why I came here. Because the world is not a 3.5-acre campus and a $13 million organization. The world is a lot rougher than that. And when you hear stories about, ‘Yeah, I’m living in a trailer in Nelson County and the snakes are coming up through the floor, and I live with my dad and me and my daughter have to eat off paper plates cause I got the AIDS’—really? Those are stories from 1986…And as much as it can make you angry, it’s also really motivating, because it is a justice issue.
“I think every single one of my staff and myself in part understand exactly what it is to do something that isn’t the healthiest for you. So one of the things we really pride ourselves on is that there are no judgements. You can talk about anything, whether its the 68-year-old woman who just buried her second husband and has three dates from match.com and wants to talk about lube. Or whether you’re the young man who just got thrown out of the military because you tested positive and you’ve had 120 partners in the past four months thanks to Grindr. There’s no judgements here. We get it. Let’s talk about it. let’s meet you where you are so you can get out of that spot, if that’s not where you want to be.
“[About two years ago] we started talking to the state about how we could start integrating Hep C testing. The state got funding from the CDC, and asked us if we would be a pilot site. This is the first time in the Commonwealth’s history that we’ve done any Hep C testing—mass, community-based testing, very different than when you go to your doctor’s office and ask for it.
“We know there’s a population out there living with Hepatitis, just as we know there’s a popuation living out there with HIV. And we know how to address those issues. So it’s a completely natural thing for us to be engaged in. We’re really happy about it, because they go together. So many of the risks for Hep C are similar to the risks for HIV. From a scientific, epidemiological perspective, it’s very similar to HIV. There’s going to be stigma around it. There’s going to be fear of treatment. There’s going to be fear of, how do I engage with the world as a person living with a chronic disease? Because as much as we talk about these things being survivable, let’s face the facts. This is not diabetes. These are issues that come with judgments by most people. Which is what’s so important about ASG. There’s no judgment.
“After six months of thinking I was going to shut this place down, and realizing what it would lose with that capacity, that always open door, those always open arms, I also recognized, well, hell. If we can’t make this work in Charlottesville, we can’t make this work anywhere. And that’s the reality. This is the best place to try this great experiment, of [whether] an AIDS services organization take what we learned in 20-odd years of dealing with the epidemic, and apply it to all of the populations experiencing so many of the same levers that are affecting their ability to achieve the health outcomes we want for every American?
“We have all the pressures of the South, but we also have a major research institution in our backyard. We have all the poverty and discrimination and racism and sexism, but we also have a really proud population [that is] really excited about who we are as a community, with a real sense of place. So I think having those two create this great energy. More than in Fredericksburg, more than in Roanoke, more than in North Carolina, more than in Louisiana. I think we can come up with a solution for how a southern rural community addresses chronic disease, access to care, and social justice.”