Peter DeMartino did not witness the arrival of the AIDS epidemic in Charlottesville, but he knows the stories.
“Quarantine, nurses in suits, food left outside the door, people not being bathed or touched,” said DeMartino, who in 2010 became the executive director of the city’s AIDS-HIV Services Group (ASG). “It was that time in the crisis where people didn’t know. There was a lot of ignorance and a lot of fear.”
In the 27 years since ASG was founded to fight AIDS locally, a lot has changed. And in the three years since DeMartino’s arrival, ASG has changed too, broadening its mission to focus not just on testing and advocacy, but whole-patient health care. Now, the organization is expanding its scope even more with a grant from the state to conduct some of the first community-wide testing for another deadly virus with a powerful stigma: Hepatitis C, which kills 12,000 American annually, and, if early test results are any indication, occurs in high rates in Charlottesville.
Even as the Centers for Disease Control (CDC) were recommending more people get tested for Hep C, which can persist for years without causing any symptoms, ASG found there was a vacuum of data on the disease in the Commonwealth. So the group stepped up when the Virginia Department of Health received funding from the CDC to explore proactive Hep C testing. Last month, ASG became one of two pilot sites in Virginia, offering a free, 20-minute Hep C test as a complement to an HIV test, both at its offices and at other sites in the community.
It’s a shift, said ASG staff, but one that lines up with the core values of an organization that knows how to fight diseases that nobody wants to talk about.
By the time the New York-born DeMartino hit his teens, there was widespread understanding of how to prevent HIV, but also plenty of reason to be afraid. So many had already died. “As a young gay man, there was sort of that fatalistic attitude of not if, but when,” he said.
In 2004, fresh out of graduate school and newly diagnosed as HIV positive, he went to work for the Desert AIDS Project in Palm Springs, California, fueled by a desire to seek out and learn from the people who had fought their way through the early years of the epidemic.
What he found was a $13 million organization serving mostly retirees who had been positive for years, led by people who had long ago put down the sword.
“We’d become this mecca, this odd Disneyland of people with HIV,” DeMartino said. “It got to a point where I started thinking, ‘Why am I doing this work still?’”
When he came to ASG in 2010, he knew he was facing a whole new set of challenges. The disease was the same, he said, but the epidemic was totally different—from the one in Palm Springs; from the one in Charlottesville in the ’80s, when ASG was founded. Especially in the rural South, AIDS was starting to look like a symptom of larger issues: poverty, poor health care, and systemic discrimination.
“It might not be people dying in bed unwashed and unfed because people are afraid of their HIV,” he said. “But now it’s transgendered individuals. It’s African-American women who’ve never felt like they had the right to appropriate care.”
DeMartino decided the local fight against AIDS needed not just new tactics, but a new mission. In three years, ASG has gone from a testing and crisis counseling center in an off-the-radar IX building space with an unmarked front door to a behavioral health organization offering a wide range of counseling and education services out of a highly visible and home-like building in the Martha Jefferson neighborhood.
The number of people coming through its doors is up 30 percent since 2010, DeMartino said. Support groups—positives, non-positives, partners, singles—meet in sunny rooms full of overstuffed chairs. Staff are trained to screen for mental health and substance use issues, a licensed clinical social worker is on hand to offer counseling for anyone who needs it, and ASG is now the first AIDS-specific organization in the Commonwealth licensed to provide Medicaid services.
In the midst of its institutional shift, staff and board members started looking for a way to take on another such disease: Hepatitis C.
An AIDS group targeting Hep C makes a lot of sense, DeMartino said. The two viruses have overlapping risk pools—sharing needles is probably the most common way Hep C is spread, though it’s possible to transmit it through unprotected sex—and there’s a high rate of co-infection. “From a scientific and epidemiological perspective, it’s very similar to HIV,” he said. “As a social issue, from a ‘How do we handle it in the community?’ standpoint, it’s extremely similar. There’s going to be stigma around it. There’s going to be fear of treatment.”
Christopher Barnett, ASG’s testing coordinator, said that of those screened, 9.5 percent have tested positive for Hep C. There’s not enough existing data to know if that’s unusually high for an at-risk population, said Barnett, but even ASG’s staff was surprised at the number.
When people do test positive, Barnett and others are there offer to support and a road map to treatment. Those infected can live for years with few symptoms, and the disease is often curable, but eventually, 70 to 85 percent who get it will develop chronic liver disease, and up to 20 percent will develop cirrhosis, according to the CDC.
“It’s crucially important that they know what their options are,” Barnett said.
DeMartino hopes that by applying what ASG has learned from nearly three decades of AIDS work to the fight against another killer virus, the organization can reach more people at risk for and infected with both, and at the same time, make Charlottesville the poster child for how to battle stigma-laden chronic disease in the South. The city has its share of issues that compound the problems of AIDS and Hepatitis, he said, but it also has the resources and willingness to fight back against all of that.
“If we can’t make this work in Charlottesville, we can’t make this work anywhere,” he said.
Why baby boomers need to get tested
Hepatitis C—a virus that causes liver damage, including cirrhosis and liver cancer—is the most common blood-borne infection in the U.S. About 3 million Americans have it, and nearly 75 percent of them were born between 1945 and 1965. As a result, the CDC last year started recommending all boomers get tested at least once in their lifetimes, regardless of whether they have other risk factors.
Other high-risk groups who should get a Hep C test include those who:
- Currently or have ever injected drugs, even if it was just once or many years ago
- Received donated blood or organs before 1992, when screening improved
- Are on hemodialysis
To schedule a rapid test—you’ll have results in 20 minutes—visit www.asgva.org.