Race, Health Care and the Law 
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LEANING ON THE 'CONSCIENCE OF THE CONGRESS'

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Vernellia R. Randall
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Maya Rockeymoore, Ph.D.[1] 

Maya Rockeymoore, Ph.D., AFRICAN AMERICANS CONFRONT A PANDEMIC: ASSESSING COMMUNITY IMPACT, ORGANIZATION, AND ADVOCACY IN THE SECOND DECADE OF AIDS, in State of Black America (2002)

 

 As the decade wore on, it became increasingly evident that a third stage, extending from the early to late 1990s, had evolved.  This stage was marked by the increased professionalization and expansion of minority community-based AIDS organizations.  The strongest of the organizations created in the first and second phases extended their reach among the populations they served, became more polished in their public relations efforts, and, perhaps most significantly, became adept at placing political pressure on government officials at the local, state and federal levels.

Community organizations that were created in earlier stages began to push for legislative remedies addressing the challenges of providing education and care services to the African American community.  The Black Leadership Commission on AIDS, the National Minority AIDS Council, Balm in Gilead, and Gay Men of African Descent were just a few of the organizations that came together to lobby members of Congress.  As active participants in the Congressional Black Caucus Health Brain Trust, representatives from these organizations were also involved in working with Congressional Black Caucus members to develop an AIDS plan of action.

The minority organizations and CBC members believed that AIDS dollars should follow the course of the epidemic to reduce the incidence of HIV/AIDS and provide quality services for those already infected.  Representatives from the African American CBOs eventually worked with the CBC to formulate an initiative designed to circumvent their funding difficulties by creating a new funding pool dedicated to capacity building in minority communities.  The political response of the gay community in the 1980s demonstrated that government resources were the key to saving lives because they were vital to supporting and promoting AIDS research, treatment and prevention measures.  Thus, by pursuing more resources, community activists, AIDS bureaucrats and politicians in the black community were following a previous mobilization model that directed critical resources to support and validate the lives of people with AIDS and HIV infection.

For years, Representative Louis Stokes of Ohio , serving as chair of the Congressional Black Caucus Health Brain Trust, brought together experts, bureaucrats, and constituents from all over the country to discuss health issues facing the community.  From diabetes to glaucoma and health insurance coverage, his Brain Trust provided a forum to bring attention to pressing health matters in need of a legislative remedy.  AIDS activists and professionals from many of the organizations discussed previously participated in these Brain Trusts and in 1994, the CBC held it’s first hearing on HIV/AIDS in the African American community.  Since that time, the CBC has dedicated a segment of its bi-annual Health Brain Trust to the issue. The networking facilitated by the brain trust helped set the stage for CBC political action on AIDS. 

It would not be until 1997 that AIDS was placed on the formal legislative agenda of the CBC. Under the leadership of newly elected Chairwoman Maxine Waters, the CBC issued a document called “The Agenda” that outlined the organization’s legislative priorities for the 105th Congress.  Encompassing a host of issues from drugs to education, computer literacy and employment, The Agenda listed HIV/AIDS as a legislative priority for the first time in the organization’s history.  While previous Brain Trusts and a special CBC hearing provided crucial information and attention to the issue, its inclusion on the formal agenda meant that HIV/AIDS was now a legislative priority that the organization could officially pursue as a collective. 

The AIDS language in “The Agenda” reflected the no-nonsense style of the new CBC chair.  It acknowledged that many African Americans considered HIV/AIDS to be “taboo” and challenged the perception of AIDS as a “gay disease.”  The document’s frank approach marked a significant departure from the largely conservative response of many in the community and directly challenged the way the disease had been framed by black leaders—particularly among faith-based leaders.  The document also underscored the serious nature of the epidemic and assured that “immediate action” would be taken to reduce the spread of the disease through the pursuit of additional resources for education, research, treatment and prevention directed towards communities of color “at risk” for HIV/AIDS.

            The CBC began to act on the promises set forth in The Agenda the following spring.  On Friday, April 24, 1998 , the CBC held its annual spring Health Brain Trust in a half-day forum held in the Rayburn House Office Building on Capitol Hill.   In the presence of Rep. Waters and others assembled, Dr. Beny Primm, Executive Director of the Addiction Research and Treatment Corporation, outlined the growing severity of AIDS in the African American community and urged the CBC to ask the Clinton Administration to declare a “State of Emergency” with the intent of stemming the spread of AIDS in the African American community.  CBC Chairwoman Maxine Waters wasted no time springing into action.  One week after the Brain Trust meeting, the chairwoman issued a memorandum to CBC members informing them that an emergency CBC meeting would be held the following week with AIDS activists and professionals from across the country and with representatives from the Department of Health and Human Services in attendance.  The memo also announced a press conference following the meeting “to release the findings of our discussion and a resolution to be delivered to the President.”

On Monday, May 11, 1998 CBC members met with AIDS activists from cities across the country— San Francisco , Los Angeles , New York , Atlanta —in a jam-packed room in the bowels of the U.S. Capitol.  Representatives from the Department of Health and Human Services participated as “silent observers.”  Led by Waters, the session allowed AIDS activists and representatives from minority AIDS CBO’s to share their experiences from the field.  Many of the participants spoke out about issues related to the dearth of funding opportunities, the difficulties encountered treating persons with substance abuse problems, the need for more prevention efforts, and the stigma associated with AIDS—particularly the need to address the issue of homophobia in the black community.  The activities of May 11th became the springboard for subsequent political action.  Merging Primm’s blueprint for action with the recommendations resulting from the meeting with grassroots activists, CBC leaders, particularly Reps. Maxine Waters, Donna Christian Christensen, and Louis Stokes, worked with CBO representatives and Clinton Administration officials to create the foundation of what would become known as the CBC AIDS Initiative.

Later that year, the Clinton Administration announced its support for an AIDS state of emergency in minority communities.  The Administration framed the situation as a threat to national security and dispatched the National Security Agency (NSA) to look into the matter.  The involvement of the NSA was a curious response to a matter that had been traditionally viewed as falling solely within the jurisdiction of the Department of Health and Human Services.  The Administration’s response demonstrated, however, the severity of the epidemic and the power of the CBC Chair who had established a close working relationship with a receptive White House weakened by political scandals.  In addition to declaring a state of emergency, framing the crisis as a threat to national security served to provide the administration with a justification for dedicating additional federal resources toward the CBC AIDS Initiative.

Ironically, the success of the initiative was ultimately furthered by the actions of House Speaker Newt Gingrich (R-GA).  This highly ideological and controversial leader of the Republican majority and author of its Contract With America was at the helm of a rocky House budget process during the 105th Congress.  After stalling on spending measures for much of the year for political purposes, Gingrich was forced to negotiate with Administration officials to complete an omnibus spending bill containing all of the spending measures for the next fiscal year.  Completed behind closed doors with only a few players from the White House and Congress, the Omnibus Appropriations Bill of 1998 stood 16 inches tall and contained over 4,000 pages.  In the chaotic atmosphere surrounding its completion, Clinton negotiators were able to insert an authorization for $165.7 million in new AIDS dollars to be dedicated to the CBC AIDS initiative in fiscal year 1999.[2]

            The CBC AIDS initiative broke new ground for minority communities in their fight against AIDS.  It directed critical resources toward minority populations severely impacted by the epidemic.  It also ensured that funds would go toward minority AIDS CBO’s who had been previously left out of the funding process, by stipulating that organizations eligible for the funds had to have a governing board comprised of a majority of its members representative of racial and ethnic minority groups.  This controversial measure had the effect of excluding traditional AIDS service organizations based in the white gay community.

The substance of the initiative was a conglomeration of new and expanded grants and programs spanning the various HHS agencies including the National Institutes of Health, the Substance Abuse and Mental Health Agency, the Centers for Disease Control, the Office of Minority Health, the Health Services and Resources Administration, and the Agency for Health Care Policy and Research.  These “targeted investments” sought to provide more technical assistance and infrastructure support for minority community-based organizations, better access to prevention and care for communities of color, and stronger linkages between government resources and local systems of care.  Examples of new or expanded programs targeting minorities included research on prevention interventions for gay men of color, support for faith-based initiatives that focused on integrated HIV and substance abuse prevention, grants for increasing access to bilingual HIV/AIDS and prevention services, new pilot programs in prisons to promote effective treatment and prevention methods, and special grants to directly fund programs in minority community based organizations.

            Working with grassroots activists and organizations, the CBC directly confronted issues of stigma and access in its effort to prevent the spread of the epidemic in the African American community.  The end result was a community initiated policy effort that utilized input from individuals and organizations close to the epidemic to shape the final product.  By working with informed activists, the CBC pursued policy goals that represented a realistic response to the challenges of AIDS in the black community.  Inclusive of populations traditionally referred to as deviant, the CBC initiative spoke to AIDS issues involving gays, women, prisoners, and substance abusers and demonstrated that the African American political leaders were indeed capable of prioritizing the needs of all within the community. 



[1] Much of the information in this section is synthesized from primary data that the author collected first-hand while studying the CBC as a Congressional Black Caucus Fellow in the 105th Congress.  The results of her study are documented in:  Maya Rockeymoore.  The African American Political Response to HIV and AIDS:  A Study of the Congressional Black Caucus in the 105th Congress.  Dissertation, Purdue University , 2000.

[2] While subject to the vagaries of changing political times, this appropriation would increase in subsequent years to its current level of $381 million in FY 2002.

 

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Introduction - AIDS Pandemic
The Changing Face of AIDS
AIDS and Community Mobilization
LEANING ON THE 'CONSCIENCE OF THE CONGRESS'
CONTINUED CHALLENGES IN THE THIRD DECADE
Conclusion

 
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Professor Vernellia R. Randall
Institute on Race, Health Care and the Law
The University of Dayton School of Law
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 03/10/2010

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