The Fight Continues

After 30 years of dealing with HIV and AIDS, Delaware has a long way to go in preventing the disease.

Peter Houle, executive director of the Delaware HIV Consortium,  has seen his share of tragedy  during the 30-year battle against HIV and AIDS. Photograph by Jared CastaldiPeter Houle does not look like a combat veteran. At first glance he seems to be someone who should be comfortable in his middle age, enjoying the height of his career, checking on his retirement fund and perhaps playing a few rounds of golf.

But Houle’s veteran status doesn’t allow him to rest. He knows the fight—his fight—still rages.

This 50-something, a former teacher, now the executive director of the Delaware HIV Consortium, has seen his share of tragedy during the 30-year battle against HIV and AIDS. It is with a calmness gained over decades that he tells the story of a friend who bears the infamous distinction of becoming the 12th officially confirmed AIDS death in Los Angeles when the disease emerged in the early 1980s.

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The acronym for acquired immune deficiency syndrome, which reads like second nature to us now, had barely been introduced then. Terms such as “gay cancer” and gay-related immuno deficiency (GRID) still lingered. Those who were infected succumbed almost immediately, their immune systems shattered. Doctors had no idea how to treat the condition or handle its startling effects. Houle, upon paying a last visit to his friend, was required to wear a full-body containment suit into the hospital room.

“When I look back on it, it’s just remarkable,” Houle says. “I had a list that they gave me in 1982: Do not use the same dishes. Do not use the same cup. Any surface was to be bleached. Don’t wear their clothes. Don’t touch. Always wear a mask. And I remember flying back from L.A. and reading the New York Times, and there was an item in the left-hand column saying, ‘Gay disease hits New York, Los Angeles and San Francisco.’”

Around the same time, Dr. Susan Szabo was beginning her medical residency in New York City. She came face to face with the tragedy of AIDS just as it was unveiling itself to the medical community. Now medical director for the Christiana Care HIV Community Program, which runs HIV/AIDS clinics throughout Delaware, she recalls a sense of professional paralysis among confounded doctors.

Today such images seem like ancient history. While HIV and AIDS have firmly taken root in the popular consciousness over the past 30 years, the images that frightened so many have disappeared from the front pages and the news broadcasts. They’ve been
replaced with fit, attractive actors from a road company of “Rent” pausing in the musical’s narrative to pop a dose of AZT.

But for Houle, it’s that nonchalance about what HIV has done that keeps him working to remind people in Delaware that the danger hasn’t gone away. It has only changed.

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AIDS emerged in 1981 in major metropolitan areas with concentrations of gay men. Because of the state’s proximity to major urban areas, Delaware had 30 cases of its own in 1986. Nurse Arlene Bincsik, who was working at what was then Christiana Hospital, joined several doctors who had been seeing AIDS patients privately, but in a multidisciplinary setting that provided easy access to a spectrum of care. “The point was at that time that these people were very acutely dying of the disease,” says Bincsik, who is now the director of Christiana Care’s HIV Community Program.

In 1989 Christiana established the Community Program for Clinical Research on AIDS with Dr. William J. Holloway, an expert in infectious diseases, as its principal investigator. The combination gave Delaware’s largest health system an edge both in research and treatment.

At first, treatment meant keeping patients comfortable as their diseases progressed. Then the Food and Drug Administration approved the anti-retroviral drug AZT in 1987. Yet the clinic’s partnership with groups like Delaware Lesbian and Gay Health Advocates (now AIDS Delaware) was integral to finding and treating patients. “We worked with them mainly because they had a buddy system and hospice, because the mortality rate in our first year was still 80 percent, even with AZT,” Holloway says.

Another clinician to arrive on the scene in the late 1980s was Dr. Stephen Eppes, now chief of the division of pediatric infectious diseases at Alfred I. duPont Hospital for Children in Wilmington. Having worked under Holloway, Eppes was especially interested in how the growing threat of HIV/AIDS related to young patients.

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In 1987, “there had only been one child in Delaware who had HIV/AIDS, but that number grew pretty quickly thereafter,” Eppes says. “I think partly we weren’t looking for it. We knew it was there, but a lot of kids at risk didn’t know they were at risk, and their mothers and fathers didn’t know they were at risk.”

So who was? Though doctors and researchers discovered early on that anyone could contract HIV through several means, the early stigma of “a gay man’s disease” stuck. Many refused to believe they could get the virus, and continuing discrimination against the HIV positive made testing difficult. That perpetuated a reluctance among the HIV positive to reveal their status.

Houle and his colleagues at the HIV Consortium face such challenges as a matter of course. HIV long ago moved beyond gay men, but the demographic remains the most historically devastated by its spread. And with advances in treatment that allow for the infected to live relatively healthy, productive lives, many young gay men have become complacent and are engaging in behaviors that can spread infection, says Joe Scarborough, a community planning and policy assistant for the consortium.

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The same goes for many heterosexual teens, who are subject to varying levels of education on sexual health and the dangers of sexually transmitted diseases. “That’s the flip side of effective therapy, that the disease is no longer seen as a death sentence,” Szabo says. “That paints a very different picture to adolescents and young adults.”

Early education through the classroom and high school wellness centers is important, Bincsik say, but it can go only so far in preventing risky behavior. She says the state should provide easy access to testing for teens through high school wellness centers, because many HIV cases are now appearing in young adults who were infected as teens.

Outside the gay community, HIV infection rates continue to grow among African Americans, especially women, through heterosexual contact. According to the 2008 Delaware HIV/AIDS Surveillance Report, 63 percent of those diagnosed with HIV through 2008 were African American, 70 percent of whom were female. Again, the stigma of HIV/AIDS, combined with the political danger of having unfavorable demographic data turned against them, discourages many black Delawareans from acknowledging the need to get tested, let alone actually getting tested.

So after 30 years living in the shadow of HIV/AIDS, where is Delaware now? Better at treating the infection, say the experts, but still a long way from winning the battle. “I think if you asked the general person on the street in Delaware, ‘Is HIV infection a significant problem in the state of Delaware,’ I would venture to say that a majority of people would say no,” says Bincsik. “And the answer is yes.”

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