By Kate Darby Rauch
Roughly 25 years ago, when the AIDS epidemic emerged, community psychologist Susan Kegeles, PhD, a UCSF professor of medicine, had two strong reactions.
First, she urgently wanted to help fight the spread of AIDS to prevent death and disease, partly because her brother is gay and at risk. And second, she wanted to promote health by educating and empowering communities, rather than individuals.
“I had this interest in trying to mobilize entire communities to change,” said Kegeles, co-director of the UCSF Center for AIDS Prevention (CAPS).
Studies showed that community-based programs could reduce the risk of heart disease, Kegeles said, and she wondered if this could also work for HIV/AIDS.
A few years later, Kegeles, working closely with other UCSF AIDS researchers including the pioneering social psychologist Robert Hays, who died from AIDS in 2001, introduced “the Mpowerment Project,” an evidence-based community program to reduce HIV rates among young gay and bisexual men.
The program, which uses a variety of peer-to-peer experiences to build support for HIV prevention, from block parties to serious discussion groups, has been implemented in more than 200 communities nationwide. It’s listed on the US Center for Disease Control and Prevention’s “Compendium of HIV Prevention Interventions with Evidence of Effectiveness,” – the nation’s gold standard of programs proven by research to decrease HIV infection rates.
Kegeles’ longtime contribution was recognized by an invitation to President Obama’s White House unveiling of the National HIV/AIDS Strategy on July 13, which she attended. The President used the occasion to thank the many researchers, policy experts and activists for their ongoing work fighting the disease.
“All of us are here because we are committed to that cause,” Obama said. “We’re here because we believe that while HIV transmission rates in this country are not as high as they once were, every new case is one case too many. We’re here because we believe in an America where those living with HIV/AIDS are not viewed with suspicion, but treated with respect; where they’re provided the medications and health care they need; where they can live out their lives as fully as their health allows.”
Kegeles downplays the honor, pointing out that she was among many guests attending the White House event. At the same time, she’s heartened that the national strategy specifically addresses her area of research: HIV prevention among gay and bisexual men who remain the group at highest risk for HIV infection in the US.
“We’ve never had the proportionate amount of research money for gay men as for other groups and they account for more than half of new infections of HIV,” Kegeles said. “So finally we’re addressing this. The fact that [President Obama] actually used the words gay and bisexual was momentous.”
The National HIV/AIDS Strategy identifies three major goals: reducing new infections, increasing care and outcomes for people living with HIV, and reducing HIV disparities. It calls for targeting prevention at high-risk groups and advocates for community-based programs. The executive summary states: “To successfully address HIV, we need more and better community-level approaches that integrate HIV prevention and care with more comprehensive responses to social service needs.”
For Kegeles, these words run deeply. “It’s gratifying to see that the issues I’ve focused on for all these years are now being identified on the national level.”
The national strategy has generated some criticism for being heavy on goals, but short on funding. Kegeles acknowledges this, but for the moment, she’s reveling in appreciation that it exists at all.
HIV Prevention Intervention
The “Mpowerment Project” model features a core group of young gay or bisexual men – paid staff and volunteers – who host fun, social and engaging activities for peers, and use these events as opportunities to raise awareness and encourage HIV prevention. Events include dances, discussion groups, picnics, swimming or sports – whatever the group decides.
Complimenting these social activities are heart-to-heart discussions on relationships, sexuality and other personal issues. Volunteers are critical to building program momentum and camaraderie, Kegeles explains. Ideally, each program has a community office that serves as a “safe space” for the young men.
“We know from research that when people are involved in finding their own solutions for their own problems, changes are more long-lasting and meaningful,” said Greg Rebchook, a social psychologist, assistant professor of medicine, and Mpowerment co-investigator. “The project puts HIV prevention into the larger context of peoples’ lives.”
Kegeles didn’t stop with the initial success of the model, which gained steam in 1989 after two clinical trials showed it not only reduced rates of sexual risk behavior, but was also a cost-effective approach to HIV prevention. Her team continued researching how best they can help communities successfully implement the program, providing ongoing technical assistance, training and support to hundreds of organizations.
Focusing on African Americans
While overall rates of new HIV infections have declined in the past decade, the rates among young African-American men have proportionately increased. According to recent data from the Centers for Disease Control (CDC) and Prevention, the rate of HIV infection among African American males ages 13 to 29 is seven times as high as for young white males, and three times as high as for young Latino males. Of the young African-American males getting infected, most, or three-quarters, are gay or bisexual.
Alarmed by the statistics, Kegeles set out to address this health disparity. About five years ago, her team revamped Mpowerment to focus only on young African Americans. “We had to deconstruct our program, and go through each core element and guiding principle asking ‘How does this make sense to a young black man?’”
The team conducted extensive interviews with the African American gay community, who told them the program wasn’t sensitive enough to some of their cultural realities that influence sexual behavior, Kegeles said. Among these realities: those who are struggling financially don’t necessarily think about HIV; and those raised in a church that teaches that homosexuality is sinful often internalize the guilt, which affects their motivation to take care of their health.
Armed with this feedback, the Mpowerment Project was reworked to put far more emphasis on bolstering pride in being black and in being gay, Kegeles said.
The aim is to help men feel worthy and appreciated for who they are, in hopes this translates to caring more about their health. The new model is being evaluated in a CDC-funded controlled study in Texas. Results are due in two years.