Empowering local communities in the fight against HIV

As a PhD student studying HIV-1 infection, I’m hopeful about the progress that scientists and clinicians have made in applying biological research to HIV prevention and treatment.  In the last few years, medical breakthroughs have reportedly cured the American-born Berlin patient and, more recently, an infant in Mississippi. Elsewhere in the world, cheaper prophylactics such as male circumcision and female topical microbicides are being used to decrease the incidence of infection. These events fuel the debate on which interventions are the most epidemiologically and economically feasible, and which have real impact on the strategies developing countries use to fight their epidemics. But as an African American woman from the South, I am concerned that the HIV epidemic remains a big issue in this country and that it is disproportionately ravaging African Americans, women, and the South – African-Americans have 8 times the rate of infection than white Americans.  I also wonder what unresolved debates are being held that are stalling the implementation of an effective strategy in this country.

For those unfamiliar with the HIV epidemic in the United States, 1.2 million Americans are currently infected with HIV and 50,000 people are newly infected each year. 1 in 5 HIV-positive Americans don’t know that they are infected. Health disparities are a significant burden on the African American community. Two-thirds of all HIV-infected women are African-American and 25 percent of all new infections are black gay and bisexual men. Since fifty-five percent of African Americans live in the South, the ill effects of this disparity impact a few states that have yet to sufficiently address this growing problem.

As the HIV infections and AIDS-related deaths continue here, prevention and treatment methods are being studied abroad and are continuing to improve. For example, a Gates Foundation funded organization demonstrated that community-led HIV education and condom distribution among female sex workers in India significantly reduced the number of new infections over a 5 year period. Last December, the Journal of Acquired Immune Deficiency Syndrome published the results of a 6 year study implemented by the PEPFAR supported NGO Kheth’Impilo in South Africa which demonstrated the benefits of a community-based prevention program staffed by patient advocates to prevent poor health outcomes and the progression to AIDS in HIV infected people. These patient advocates are community members that also administer and directly observe antiretroviral therapies and provide psychosocial support, resulting in a 35 percent reduction in death in patients and a 37 percent reduction in patients stopping HIV care as compared to patients not receiving community support. The bottom line from this data is that empowered communities are effective at applying tested prevention tools and stem the growth of HIV/AIDS.

All of the above information was supported by American donations. So how are those research dollars being used in the United States to end our HIV epidemic?

In 2010, the White House drafted the National HIV/AIDS Strategy that mostly sends money to other government entities to improve its neglected and inadequate services. Examples include, screening patients cared for in the Veteran’s Association or penitentiaries, or providing housing and educational assistance to HIV infected individuals, and to fund more research on the subject. But this is not enough.

This strategy is strong in providing funding but it lacks action. So the debate is: Who will act?

I believe that the state and local government should use this money to support and to collaborate with local advocacy groups, community based organizations, and private companies. In doing so, they can make groups more aware of the National HIV/AIDS Strategy and help them to act on this issue where they work and live. This strategy should additionally incentivize the formation of new HIV prevention and management organizations, especially those that target disproportionately affected communities. Like those mentioned in India and South Africa, they could be equally effective at reducing new cases of HIV through education and empowerment. The Affordable Care Act recognizes the importance of community-based organizations by allocating $11 billion to this component of the health sector. A number of programs access $298 million of federal and state funding through Community Transformation Grants to deliver community-based care targeted at chronic disease prevention. Funding for programs that use evidence-based methods of HIV prevention and management should be a top candidate for these grants, and these programs should be constantly evaluated for their effectiveness – this has not previously been the case.

My concern for this subject is motivated by hope that my work in HIV research will reach beyond the pages of a journal. I hope even more that my communities – African Americans, women, and Southerners – are no longer victimized by a preventable disease.

Nicole Espy is a 2nd year PhD student in Biological Sciences of Public Health at Harvard University.