The HIV Prevention Trials Network is holding its annual meeting in Washington, DC this week, and Science Speaks is there, covering Monday, Tuesday and Wednesday sessions.
As Tom Coates was getting ready to discuss the results of Project Accept, a 10-year study of the impact of community involvement HIV efforts on community-wide HIV incidence, he got a joking email from his friend Myron Cohen, the principal investigator of HPTN 052, which had proved that antiretroviral treatment could prevent transmission of HIV between partners in discordant couples.
“The AIDS-free generation depends on you,” Cohen told him.
“That’s a huge burden,” Coates told his audience in Monday’s morning session of the HPTN Annual Meeting. And, he added, seriously, “I would say the AIDS-free generation depends on all of us.”
By that he means collectively. If we take it one individual at a time, we’re never going to get there.”
He had started thinking about how the epidemic would ever change course when, in Africa he saw a steady stream of funerals unaccompanied by discussion of the epidemic that was causing them.
“I thought about and pondered this problem around 2000,” he said. “I really thought about destigmatizing and normalizing the virus.”
The quest to find out if that could be done, and if it could, if it would make a difference became Project Accept, or HPTN 043, results of which were published in Lancet in 2011, and discussed at the Conference on Retroviruses and Opportunistic Infections in March. Seeking to discover if community involvement in mobile HIV testing and support services would improve testing rates and through that and the accompanying reduction in stigma associated with the virus impact community-wide HIV incidence took 10 years, 48 communities in four countries, and a great deal of adapting to changes across all of that.
A major problem: the primary outcome being evaluated was HIV incidence at a community level, but measuring HIV incidence — that is determining the real rate of new cases, as opposed to newly discovered cases of HIV, is, perhaps, even more complicated than it sounds. Posing the challenge of determining when people were infected, when signs revealing that can vary by individual, the question called for finding a source of applicable data, quickly, because the study had begun.
“The train is going to the station, but no one is there to greet it, no one is there to unload the cargo,” said Dr. Sue Eshleman, of Johns Hopkins University, who Coates called up to tell what happened next. Illustrating her point first with a photo of a train barreling down a track, followed by a photo of a twin trains running next to each other, she explained how researchers collected and analyzed data that could support estimates of community wide incidence over time.
It was not the only adaptation the project faced. The President’s Emergency Plan For AIDS Relief and the Global Fund to Fight AIDS, Tuberculosis and Malaria both got underway after the study did, adding elements of increased availability of testing, treatment, and the preventive effects of treatment to the environment.
“There’s always in our studies a changing landscape,” Coates said.
But, the study discovered differences in uptake in community mobilized HIV testing that offered supportive counseling and links to services compared to that of stand alone clinics: including greater gender equity, and higher levels of HIV-case finding.
In addition, Coates said, it proved that a study involving entire communities could produce outcomes applicable to entire communities.
And, it showed, communities that were mobilized into involvement with HIV testing and support services showed what Coates called “modest reductions” in HIV incidence.