Race, Health Care and the Law 
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Vernellia R. Randall
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Maya Rockeymoore, Ph.D.



 As the disease spread and more people gained first hand experience with AIDS, segments of the African American community began to organize in an effort to heighten awareness about the threat presented by the epidemic.  By the 1990s, a small but growing cadre of activists, minority community based organizations, and AIDS bureaucrats emerged and began to agitate for additional resources for AIDS prevention, treatment and research geared toward halting the spread of the disease in African American communities. 

            In Boundaries of Blackness, Cathy Cohen identifies two stages of AIDS activism.[1]  In the first stage, she documents how black gays and lesbians were the first to organize around AIDS in the mid-80s.  Their early involvement was in tandem with the response of the larger gay community and demonstrated their quick realization of the threat that AIDS posed.  Their activism resulted in some of the earliest minority community based AIDS organizations such as the Minority Task Force on AIDS in New York , the Black Coalition on AIDS in San Francisco , the Minority AIDS Project in Los Angeles and Blacks Educating Blacks About Sexual Health Issues in Philadelphia (Cohen 1999). 

It is important to note that Minister Louis Farrakhan and the Nation of Islam were also prominent on this issue in the early years.  Under the direction of Dr. Alim Abdul Mohammad, the Nation of Islam spoke out about the inadequacy of treatment options for poor people of color.  They established the Abundant Life Clinic in Washington , DC in 1986 in an effort to provide alternative community-based treatment options for African Americans.

This early activism was followed by limited engagement on the part of black leaders and traditional institutions within the African American community in the second stage of the black community’s response.  From 1987 to the early 90s, this phase was characterized by more involvement from leaders and organizations that clearly saw the impact of the disease in their communities.  Their involvement, however, was tempered by limited resources and, for some, old beliefs about the transmission of AIDS and the types of people who contract the disease.  During the 1990 debate surrounding the creation of the Ryan White Care Act, the National Urban League applied pressure on Congress to protect the 15 percent set-aside for services to infants, children, women and families with HIV.  The Urban League was also an early recipient of CDC funds to conduct HIV prevention and education activities in African American communities.  This stage also saw the expansion of national minority AIDS organizations like the Black Leadership Commission on AIDS, People of Color in Crisis, Housing Works, and the National Minority AIDS Council (Cohen, 1999).   These community-based organizations (CBO’s) specialized in providing HIV/AIDS treatment, education and prevention services in communities of color.

The growth of these indigenous AIDS service organizations occurred alongside the development of federal legislation requiring culturally sensitive local programs and community representatives from diverse populations to serve on the local boards set up by the Ryan White CARE Act.  The legislative objective was to create a policy and political environment more inclusive of minority populations who were increasingly affected by AIDS.  Although more money became available to establish education and outreach programs in communities of color, an unfortunate side-effect was that the minority AIDS organizations found themselves competing with the longer established organizations rooted in the gay community.

Central to the problems faced by minority community-based organizations in cities across the country was a lack of access to funds that would enhance their ability to provide critical services.  In many cases the story was the same:  longer established, resource rich AIDS organizations based in the white gay community continued to win grants and obtain other vital resources, to the detriment of growing needs within minority communities.  Traditional CBO’s had become adept at obtaining funds, and their members served in key positions on local AIDS boards that were influential in overseeing the distribution of local resources and delivery services.  Newer minority AIDS organizations claimed that they found it difficult to influence processes determining the allocation of AIDS resources in the community. 

Much of the discussion of inequitable funding centers on the question of racism in the white gay community.  Charges of racism in the gay community are nothing new (Cohen 1999; Shilts 1986). What was different in this case was the charge that the allocation of AIDS funds favored white gay communities despite the fact that African Americans outpaced whites in terms of the number of new AIDS cases diagnosed.  Thus, many believed that the cultural bias of existing institutions would be a factor that contributed to skyrocketing infection rates in African American and Hispanic communities.

            It was also obvious that hard-hit black and Latino communities experienced a unique set of circumstances unfamiliar to traditional AIDS service organizations.  First, African Americans and Hispanics shared a history of oppression and exclusion that kept them outside of the social and economic mainstream of America .  Unlike the high socio-economic status of gay white men, minority populations remained disproportionately represented among lower-income families.  Their economic condition also dictated their relationship with the U.S. health care infrastructure.  It is telling that in 1999, African Americans, Hispanics and Asian/Pacific Islanders comprised 75% of all uninsured individuals in the United States—a disenfranchisement that exacerbated health disparities and created a climate conducive to the spread of disease.

            Second, the primary mode of transmission among minorities proved to be different than that of gay white men.  While men having sex with men would continue to influence transmission of HIV/AIDS among African Americans, substance abuse would prove to be the primary factor fueling its spread.  Specifically, injection drug users and individuals engaging in sex with injection drug users were at risk because of their habit of sharing used needles and other contaminated drug paraphernalia.  Again, poverty related issues often accompanied substance abusers and these factors would serve as a barrier for providing culturally competent care at traditional AIDS service organizations.

Frustrated with these dynamics and seeking to increase service capacity in black and brown communities, minority AIDS organizations took their complaints to Capitol Hill where they found a receptive audience in the Congressional Black Caucus. 

[1] Cohen, Cathy.  1999.  The Boundaries of Blackness:  AIDS and the Breakdown of Black

Politics.  Chicago :  The University of Chicago Press. 


Introduction - AIDS Pandemic
The Changing Face of AIDS
AIDS and Community Mobilization

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Professor Vernellia R. Randall
Institute on Race, Health Care and the Law
The University of Dayton School of Law
300 College Park 
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Email: randall@udayton.edu


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