July 3, 2012
The 13th in a series of articles about the Road to AIDS 2012, a 17-city tour that seeks to define the state of the U.S. epidemic and that leads up to the International AIDS Conference in Washington, D.C., in July 2012. The 12th installment reported on the Philadelphia meeting.
The importance of educating the Black community about how science affects HIV was the main topic of discussion as Atlanta residents gathered for the Road to AIDS 2012 town hall meeting in May on HIV Vaccine Awareness Day. "We have to talk with communities about the role vaccines play in treatment and prevention," said panelist Dázon Dixon Diallo, founder of SisterLove, an organization that focuses on Black women and HIV.
In Atlanta the face of the epidemic is largely African American. Black women and Black MSM are particularly affected by the disease. Yet many Black Americans don't participate in clinical trials or other research initiatives that aim to improve treatment and find a cure. As a result, researchers don't always know how effective certain drugs will be for Black Americans, Dixon Diallo told the audience. Approximately 31 registered participants, including representatives from state and local health departments and people affiliated with CBOs, attended the town hall, which was held at the Fulton County Department of Health and Wellness.
Fear is one factor that keeps Black Americans from participating because many people are afraid that vaccines and research experiments can prove dangerous, participants said. Conspiracy theories about the origins of HIV and real-life tragedies such as the Tuskegee study, in which the government withheld syphilis treatment from Black men in Tuskegee, Ala., from 1932 through 1972, contribute to the hesitancy that many Black Americans feel about taking part in studies.
The Black community is also underinformed about how science is changing prevention methods, town hall participants said. For example, studies show that if a person who is HIV positive receives treatment with ARVs, his or her viral load will decrease, cutting down the chance of HIV transmission. Town hall participants also discussed pre-exposure prophylaxis, or PrEP, which is the use of ARVs by HIV-negative individuals to lessen their risk of acquiring the disease if they have sex with someone who is HIV positive.
Another group that needs more targeted information, according to town hall participants, is the youth. "We need to have communities of parents demanding sex education in schools," said Dixon Diallo. HIV/AIDS activists can also use social media such as blogs, Facebook and Twitter to attract young people.
Despite the need for more outreach, many town hall participants lamented the fact that there may be fewer community-based organizations to do it. "The business model for HIV has changed forever," said A. Toni Young, executive director of the Community Education Group and moderator of the event. With the implementation of the National HIV/AIDS Strategy and the Affordable Care Act, some community-based organizations (CBOs) will likely close as prevention efforts become more targeted. "We're shifting from massive testing efforts to specific testing of those who are at risk," said Leisha McKinley-Beach, Southern regional coordinator for the Black AIDS Institute.
One way that organizations can survive in the coming years is to look for ways to complement one another. "We need to talk to each other beyond our racial groups," said panelist Francisco Ruiz, senior manager for racial and ethnic health disparities at the National Alliance of State & Territorial AIDS Directors. For example, the Black AIDS Institute and the National Latino AIDS Action Network have been working on projects together, Ruiz added.
Other panelists included Marsha Martin, executive director of the Urban Coalition for HIV/AIDS Prevention Services, and Rudolph Carn, founder and chief executive officer of NAESM, an organization that focuses on the Black gay male population in Atlanta.
Despite the challenges faced in reaching out to the larger community, people can make a difference by sharing what they know with their personal networks. "The success of this meeting is not how many people are here today but how many people you all share this information with," Ruiz said.
The entire Road to AIDS 2012 tour is a joint effort between the Washington, D.C.-based Community Education Group, the Urban Coalition for HIV/AIDS Prevention Services, pharmaceutical company Merck and AIDS 2012. The Road to AIDS 2012 will seek community input in cities across the country. That input will be shared at AIDS 2012 in Washington, D.C., when the International AIDS Conference is on American soil for the first time in more than 20 years.
Tamara E. Holmes is a Washington, D.C.-based journalist who writes frequently about health and wellness.