Distrust of the medical system has been a barrier to care for African-Americans long before the AIDS epidemic. Blacks have the highest mortality rates due to heart disease, diabetes, and some cancers, partially because of their distrust of medical providers, and the poor treatment they experience when they get into the system. There is also the lingering legacy of mistreatment by researchers—particularly during the Tuskegee Syphilis Experiment—which left Blacks wary of medical programs and clinical trials.34,35
Black immigrant populations face additional language and cultural barriers to care. Some may fear arrest due to immigration issues, while others are reticent to seek care due to the ongoing association of HIV with the Caribbean and Africa. Indeed, simply being Haitian was labeled one of the original four risk factors for AIDS in the early 1980s—known as the “4H club”—along with hemophilia, heroin addiction, and homosexuality.36,37
The continued stigma and mistrust of health care professionals threatens the well being of African-Americans communities nationwide. Indeed, Blacks tend to test for HIV later in their infection than Whites, and many, like Delores, are diagnosed with both HIV and AIDS, or progress to AIDS within a year of HIV diagnosis. Due to the lapse in time from seroconversion to development of symptoms, African-Americans diagnosed with HIV in their 20s or even 30s may have actually become infected in their teens. During this time, they may have unknowingly transmitted the virus to others. Entering HIV primary care later in their disease progress also could undermine their health outcomes and shorten their lifespan.
HRSA Responds to HIV Epidemic Among African-Americans
In the early days of the AIDS epidemic, care was virtually nonexistent. Many patients died in hospital emergency wards. Those who were admitted encountered terrified health care workers and indifferent medical doctors who refused to touch them without wearing HAZMAT “moon suits.” In the midst of this suffering, a loosely connected system of community-based organizations, providers, activists, patients, friends, parents, and partners formed, providing the first real network of health and support services for PLWHA.38
Cultivating a supportive and active community is crucial to improving health outcomes for African-Americans living with HIV/AIDS.
HRSA recognized and harnessed the power of this community-based response to HIV/AIDS and funded the first HIV-specific Federal health initiatives, known as the AIDS Service Demonstration Grants, in 1986. Launched in four of the Nation’s most heavily impacted cities—New York, San Francisco, Los Angeles, and Miami—the grants provided much needed financial and political capital to those delivering HIV care on the ground. They also legitimized and heralded the community-based response’s ability to effectively “provide the spectrum of needed services for people with HIV infection and its complications and provide appropriate alternatives to inpatient care.” For the first time, there was a sense of compassion and support for PLWHA among government officials, the media, and the general public.39