HIV Prevention: A Network of Stories
At the end of June, StoryCorps Door-to-Door traveled to Washington, D.C., to record stories at the HIV Prevention Trials Network annual meeting. HPTN, as its name suggests, is a group of scientists, researchers, physicians, and community stakeholders who work to test HIV prevention methods. Last April, they made history with Trial 052, a study that followed couples in which one person was HIV-positive and the other is HIV-negative, in 13 different countries. They found that HIV transmission was reduced by 96% when the HIV-positive partner took antiretroviral therapy.
As hundreds of people from around the world attended the different meetings, we listened to the stories of a wide range of participants: physicians, researchers, bioethicists, and community activists. Some had worked on Trial 052 and shared memories of the struggles and excitements they experienced as the trial progressed. Some had worked at research sites around the world, such as in India, Thailand, Malawi, and Zimbabwe. Mike Cohen, the project director of the trial, recounted the moment he heard the preliminary results of the study. His interview partner, James Hakim, a site investigator for the study in Zimbabwe, shared his experience of telling couples about their positive results. There was nothing more exciting, he said, than watching each couple celebrate the news together.
Other StoryCorps participants remembered watching the HIV epidemic evolve, sharing stories from the very first days of the virus and recalling the initial fear and confusion that quickly spread. Russell Brewer and his mentor, Darrell Wheeler, spoke about their research work around race, structural inequality, and the transmission of the virus. Their words were echoed in many interviews, as they discussed the need to combat social issues alongside medical ones.
Doctors and old friends Elaine Abrams and Wafaa El-Sadr recalled working at a clinic in Harlem during what they called “the early dark days” of the epidemic. Wafaa remembered the fear she felt each week, walking into the clinic and wondering which of her patients would be severely ill. Elaine talked about one of the first children she was able to give protease inhibitors to and what it was like to watch his health dramatically improve. They laughed as they realized it became a benchmark for kids at the clinic to grow taller than Elaine, who, in her own words, just barely reaches five feet.
As they ended their conversation, Elaine and Wafaa were cautious but hopeful at the possibility of an AIDS-free generation. Reflecting on their work, Wafaa told Elaine she hoped that “in twenty years we’ll be working together, and we’ll have a chance to sit together and think back on today,” and Elaine, finishing her friend’s thought, added, “to meet again and tell the rest of the story.”
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