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From Community Care to HRSA, HAB Leader

The HIV/AIDS epidemic in the 1980s created a new generation of community organizers. These courageous men and women helped form the earliest networks of HIV care, founding the first AIDS service organizations and leading advocacy efforts on behalf of people living with HIV/AIDS. These efforts would result in the passage of the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act, which established the Ryan White HIV/AIDS Program.

Some of these leaders later brought their experience on the frontlines of the epidemic to the U.S. Department of Health and Human Services, Health Resources and Services Administration (HRSA), HIV/AIDS Bureau (HAB). This group of invaluable personnel includes Michael Evanson, who began his career in the 1980s delivering care to PLWHA in Washington, DC, at the Whitman-Walker Clinic.

Evanson joined HRSA, HAB as a project officer in 1998, and has played a key role in improving the quality and reach of HIV/AIDS care in underserved communities. Today, he serves as HAB’s senior policy analyst, representing the Bureau in the interagency workgroup overseeing the rollout of the National HIV/AIDS Strategy.

He says, “We keep the barriers and stigmas that prevent African-Americans and other marginalized populations from accessing care at the forefront of our conversations about the NHAS. It is only by addressing these issues head-on will we be able to truly end HIV/AIDS in the U.S.”

Roadblocks to HIV Screening, Treatment, and Care in Black Communities

Much of the disproportionate impact of HIV, and subsequent high demand for Ryan White-funded services among African-Americans reflects the socioeconomic drivers found within their communities. David J. Malebranche, an assistant professor of medicine at Emory University’s School of Medicine who has a joint appointment with the Rollins School of Public Health in Atlanta, Georgia, says a combination of socioeconomic factors, from lack of insurance to limited health literacy, has helped perpetuate HIV in the Black community. “Take lack of education and employment, displacement, homelessness, powerlessness, trading sex for money—and then throw HIV in the mix—and it’s going to be an explosion” of health disparities and HIV infection.

Also added to the “mix” is poverty, with over one-fifth of African-Americans living below the Federal Poverty Level (FPL).14 This reflects, in part, the economic downturn in 2008 and resulting unemployment experienced nationwide. The recession has devastated African-American communities, which have experienced rates of unemployment nearly twice the national average of 8.8 percent.15,16 As a result, nearly 21 percent of Blacks report living without health insurance, which has seriously undermined health outcomes and fueled health disparities, such as disproportionate rates of heart disease and diabetes, as well as HIV/AIDS, in Black communities.17 As one HIV provider in New York City explains, “HIV medications and hospitalizations are expensive. And unfortunately when you are Black and poor, whether you are a man or a woman, it is just one of the things you have to deal with and manage.”

Photo of African-American man looking at a health-care provider.

African-American women and gay Black men have been particularly hard hit by HIV, though they experience slightly different barriers to care. According to the CDC, most Black women diagnosed with HIV/AIDS live in poverty, which severely undermines their ability to seek HIV services.18 The story of Delores, an African-American woman living with HIV, is typical of many African-American women learning their status for the first time:

I was poor, and at that time, I was using drugs and having sex to both feed my habit and keep a roof over my head. I didn’t think about the risk of AIDS—I thought about the next fix, and what I had to do to survive. I didn’t do anything about it at first, including use condoms, or get into care for two years.

It was not until she got into treatment for her drug addiction, with the help of a Ryan White-funded provider, that she could even accept that she had AIDS. Unfortunately, too many Black women enter HIV care too late. HIV/AIDS has been one of the leading causes of death since 2000 for African-American women ages 10 to 54.19 In 2011, HIV/AIDS was the number one cause of death among Black women ages 35 to 44.20,21

The internalized stigma and stress experienced by many PLWHA are often heightened among African-American women already stressed by the daily responsibilities of caring for children and other family members. It is not uncommon for providers to report that HIV-positive Black mothers often defer medical appointments and purchasing medications to ensure their family’s needs are met. Much of this selflessness is driven by cultural norms of “collective responsibility,” in Black communities, which designates African-American women as caretakers of children, their partners, and their extended family and community members.22

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