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The Human Face of Hope

By Michelle Ye Hee Lee Posted: 12/07/2007
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Brett Weinstein
Scott Smith plays at home with his Bassett hounds, Honey and Pearl.
Part three of a three-part series. Read more here.

Wearing a purple long-sleeve unitard and a utility belt with condoms and candies, Scott Smith and his fellow Latex League of Safer Sex superheroes embarked on a mission to promote safe sex in the mid-1990s.

With six cases of condoms donated by Grady Memorial Hospital in the trunk of his car, Smith — alias “The Glove” — and his friends would visit bars, clubs and gay pride parades to hand out condoms.

Although he is no longer joined by Condom Man, Latex Lad, Dental Dame or Rubber Maid, Smith continues to volunteer for HIV/AIDS initiatives today.

Smith is one of more than 550 test subjects who have volunteered for AIDS vaccine clinical trials at The Hope Clinic of the Emory Vaccine Center. Each test subject plays a crucial — but often unrecognized — role in developing a vaccine for AIDS.

The volunteers receive either vaccine or placebo injections, and are monitored through routine visits for up to four years.

“It’s something that makes sense for me,” Smith, 40, said. “We all have to do what we can.”

Smith currently lives with his partner of nine years, his partner’s 21-year-old son and two Basset hounds, Honey and Pearl. Before consenting to the study, Smith discussed the possible risks with his partner.

“We read through the documents together,” he said, petting Honey and Pearl at his feet. “There was nothing to react to, it’s just a 20-minute visit [to the clinic each time].”

Volunteering was more of a personal experience, Smith said, and he only told a handful of his friends about his participation in the trial.

“It’s sometimes more challenging to do something I haven’t told everyone I did,” Smith said. “I have a sense of commitment to the cause of fighting HIV/AIDS.”

One Step at a Time

Ryan Roche (’05C), 24, decided to volunteer after he saw an advertisement from the Office of Lesbian, Gay, Bisexual and Transgender Life. He became interested in HIV/AIDS initiatives after taking a class on queer theory during the spring semester of his senior year, when he learned that AIDS used to be referred to as a “gay disease.”

“It’s one of those things you always have to be aware of as a gay male,” Roche said. “Being HIV-negative, I want to help other people stay HIV-negative.”

Currently, there are about eight studies conducted by The Hope Clinic.

Each vaccine is tested in three double-blind, placebo-control phases, which means neither the administrators nor the subjects know which subjects receive the placebo and which receive the vaccine.

The first phase, which involves dozens of volunteers, tests the vaccine’s safety and immune response on HIV-negative volunteers.

If the vaccine is tolerated well, it moves on to phase two, which tests if the vaccine generates the same safety and immune response profiles in a group of hundreds of volunteers.

Phase three is an efficacy study conducted on thousands of individuals who are at higher risk for acquiring HIV. Volunteers in this phase receive both injections and standard care, which involves counseling and safe-sex education.

“We’ve had many trials and have had strong participation from the general community and also from Emory,” said Mark Mulligan, executive director of The Hope Clinic.

Mulligan said volunteers cannot contract HIV from the vaccines, and they undergo an informed consent process and a blood screening before beginning their first vaccines to make sure they are HIV-negative.

“It’s important to make it clear the vaccine cannot cause the infection,” Mulligan said. “There’s no virus there. There’s only copies of certain parts of the virus.”

Many volunteers go on without knowing the outcome of their contribution. And in some cases, the vaccines fail. Smith and Roche participated in a study evaluating a vaccine developed by the pharmaceutical giant Merck, the first of the T-cell generating vaccine approach, which was announced in September to have failed. But they consider themselves as a part of a study that will pave the way for future studies.

“Even though they found it ineffective, I was able to be a part of research. It will help in some way,” Roche said.

Emory does not test its own GeoVax vaccine in order to avoid conflicts of interest. Mulligan said the vaccinations for the Merck study were completed at Emory, but The Hope Clinic will continue following the volunteers who participated in the study for infections and immune response.

The Long Fight Against AIDS

Kimberly Hagen, assistant director of the Emory Center for AIDS Research, acts as a liaison between Emory’s AIDS research investigators and CFAR’s scientific leadership. She initially decided to participate in the study to be able to speak about AIDS vaccine research from a first-person perspective.

“With my position here at CFAR, I spend a fair amount of time talking to people about experimental AIDS vaccine, about clinical trials,” Hagen, 50, said. “It seemed rather hypocritical of me to urge people to join a trial when I wasn’t even doing it.”

As she continued participating, she became attracted to the enthusiasm and care with which The Hope Clinic carried out its trials.

“They were just so welcoming,” she said. “They make it clear that you are doing something that will personally make the solution to the AIDS epidemic happen, which is a very empowering feeling.”

For Hagen, speaking with people who do not know about AIDS vaccine testing is another chance to spread awareness and knowledge. Her experience comes in handy when giving a large group talk or when meeting with a person who is interested in volunteering but has doubts about the safety of the procedure.

Hagen said she hopes to incite curiosity by planting the idea of volunteering for vaccine testing in others.

“I don’t expect to have a whole army of converts following me out the door to the clinic,” she said. “My hope is that what I’ve done is I’ve caused them to start thinking, and one of these days they’ll realize they don’t have any good reasons for not participating.”

The response to efforts against HIV/AIDS has shifted during the last 20 years, said Hagen, who first entered the field in the ’80s as a health educator.
Back then, Hagen was asked to leave a restaurant when she and her colleagues were talking about their AIDS work because other customers felt uncomfortable.

Her cousin did not want her to visit, fearing she would bring HIV into the house. At a social function, no one around her would eat from the same plate of hors d’oeuvres after finding out that she works for HIV/AIDS initiatives.

People are not as startled to hear that she participates in an AIDS vaccine research nowadays, she said. Instead, many are intrigued and ask her questions about the trial.

“After having lived in that era, people just being sort of curious of what it’s like to be in a vaccine trial — it wasn’t quite as intense as it had been in the early days,” Hagen said.

Hagen’s involvement with the fight against AIDS began in the mid-1980s, when she saw a poster of a heart drawn with white, red, yellow, pink and blue lines on the window of a shop that was “absolutely perfect” for her kitchen.

The poster was not for sale, but Hagen bought a ticket for the fundraiser it was advertising in hopes of attaining a copy there. The event turned out to be her first encounter with the gay community and the growing problem of AIDS.

After speaking with the man sitting next to her, who was crying throughout the event, Hagen found out that he had attended his 14th funeral of a friend who died from AIDS earlier that day.

“I remember being stunned and thinking, I hadn’t at that point in my life lost 14 people I knew, period, in my entire life, much less from one problem,” she said.

When the man asked if she was gay and she answered no, Hagen said he physically withdrew from her and said, “Then what are you doing here?”

“That just hit me like a ton of bricks,” Hagen said. “This community of people that were being mown down by this disease was so marginalized that this guy couldn’t even imagine somebody who wasn’t a part of his community [being at the event]. And therefore, I must be there for some bad purpose.”

The next day, Hagen began volunteering for AIDS Atlanta. More than 20 years later, the poster hangs in her office at CFAR as a reminder that “sometimes you can do the right thing for the wrong reason.”

“I got here by mistake, but this is in fact where I belong,” Hagen said.

— Contact Michelle Ye Hee Lee.

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