African Americans Confront a Pandemic: Assessing Community Impact, Organization, and Advocacy in the Second Decade of AIDS

By Rockeymoore, Maya | National Urban League. The State of Black America, January 1, 2002 | Go to article overview

African Americans Confront a Pandemic: Assessing Community Impact, Organization, and Advocacy in the Second Decade of AIDS

Rockeymoore, Maya, National Urban League. The State of Black America


Last year marked the twentieth anniversary of the recognition of a new pandemic called Acquired Immunodeficiency Syndrome. Over time, the landscape of AIDS policy, politics, research, and epidemiology have shifted dramatically to engulf individuals, communities, states and nations in a battle to ward off mass destruction resulting from the spread of AIDS. Despite growing attention to the issue, solutions for curbing the spread of AIDS have largely been elusive.

The progression of the disease in the U.S. is similar to its evolution in the world: Black and brown people are disproportionately the sufferers of the AIDS epidemic. While an analysis of the global implications of AIDS on poor nations of color is an important and necessary undertaking, this essay will maintain a narrow analytical lens in considering the plight of people of African descent living in the United States of America It is the hope that this will illuminate community processes that could prove useful in efforts to mobilize individuals and communities elsewhere.


Since the beginning of the epidemic, the politics and policies that developed in reaction to the AIDS scourge have been rooted in the unique experiences of America's gay community. Overwhelmingly white and male, the vocal gay community responded to the early threat of AIDS by mobilizing and using political muscle to marshal federal, state, and local resources. Their remarkable achievements in battling the ravages of a mystifying disease should not be minimized-the more so because they simultaneously had to fight a widespread social stigma and blatant discrimination in order to bring the devastation of AIDS in their communities to national and international attention. Their early dominance and success, however, have influenced the content and shape of the political processes surrounding the distribution of AIDS resources to such an extent that it has had a crowding-out effect on other groups who have also been severely affected by the epidemic.

Unbeknownst to many, African Americans have been disproportionately affected by HIV/AIDS since the beginning of the epidemic. Early surveillance data issued by the Centers for Disease Control and Prevention (CDC) revealed that black Americans were among the first cases of AIDS in America and that their rate of infection was disproportionate to their representation in the general population. Unlike the white gay community, however, the black community failed to formulate a coordinated early response to the epidemic for a variety of reasons that were rooted in the campaign of misinformation about risk categories and transmission that surrounded AIDS in its early years, and in socio-cultural biases that colored attitudes toward people affected by the disease, as well as in depressed socio-economic conditions that made it difficult to discern the gravity of a new threat amidst other pressing concerns.1 The salience of this last point cannot be ignored. In the 1980s, the crack-cocaine epidemic, a dramatic spike in drug-related crime activity, massive unemployment, and the hostile posture and punitive policies of the Reagan/Bush administration consumed African-American communities. The impact of these and other factors diminished their capacity to recognize the spread of AIDS and to formulate an appropriate response.

The second decade of AIDS would bring new concerns to the fore as epidemiologists and the mainstream news media brought heightened attention to the growing devastation created by HIV and AIDS in communities of color. Since 1994, African Americans have outpaced other groups in new cases of HIV/AIDS. Although only 12 percent of the population, African Americans represent 38 percent of all AIDS cases reported in the United States. In 2000, more African Americans were reported with AIDS than any other racial and ethnic group. Indeed, 63 percent of all women and 65 percent of all children reported with AIDS in 2000 were African American. The rate of reported cases for African Americans was two times greater than the rate for Hispanics and more than eight times greater than the rate for whites.2

Contrary to the malaise in the first decade of AIDS, however, the second decade of AIDS was very different in terms of impact, organization, and advocacy in the African-American community. By the second decade it became clear that the institutions created by the AIDS epidemic were a micro-version of the racialized institutions and processes of the larger U.S. health care system and society-at-large. The fact that African Americans were contracting HIV and dying from AIDS in record numbers provided an indicator that AIDS service organizations, research entities, and treatment and prevention models-formed to meet the needs of white men of means-were inadequate to address the unique circumstances of African Americans and other racial and ethnic minorities. These stark socio-political realities would serve as a catalyst for a new era of black political activism.

The "Changing Face" of AIDS

Changed realities and perceptions in the second decade of AIDS resulted in more attention to the epidemic's impact in communities of color both in the mainstream and in the African American community. Many have argued that the early depiction of AIDS as a disease primarily affecting white homosexual men distorted the reality of AIDS transmission and contributed to the rise of AIDS among other groups who believed that they were not at risk for the disease (Cohen 1999; Schiller 1992; Shilts 1987).

Yet a series of events in the 1990s, all of which involved prominent African Americans, served to heighten awareness and combat old stereotypes about HIV/AIDS and its transmission in the African-American community. Star athlete Earvin "Magic" Johnson's November 1991 announcement that he had tested positive for HIV during a routine physical exam was a shock to the black community (and many in White America as well). As a result, more news stories focused on AIDS in the black community and more African Americans were made aware of their risk. Another critical moment influencing African-American perceptions of AIDS came in April 1992 when famed tennis champion Arthur Ashe announced that he had contracted AIDS from a 1983 blood transfusion during open-heart surgery. Ashe died of AIDS-related pneumonia in February of 1993. His struggle served to further educate the community about the epidemic. Finally, the sudden death of popular rap star Eric "Eazy-E" Wright at the age of 31 from AIDS in March of 1995 served as a wake up call to younger African Americans who admired Wright and his music. For many younger African Americans, Wright's death smashed the long-held myth that heterosexuals were immune from contracting HIV and AIDS.

The rapidly escalating numbers of African Americans and Hispanics contracting HIV and AIDS would be another factor that heightened attention to what some in the popular media referred to as the "changing face" of AIDS. The proportional distribution of African-American AIDS cases reported by the CDC increased dramatically throughout much of the '90s with the proportion of blacks with AIDS surpassing that of whites by mid-decade. By the end of the decade, African Americans and Hispanics made up more than half-56 percent-of the total number of AIDS cases reported in the U.S. In 2000 alone, African Americans represented almost half (47 percent) of all reported AIDS cases even though they made up just 12 percent of the population.

African Americans' growing concerns were reflected in a 1998 survey conducted by the Kaiser Family Foundation. Their report, based on telephone interviews with 811 African-American adults, found that a majority, 52 percent, considered AIDS the most urgent health problem facing the nation. Forty-nine percent of the respondents indicated that they personally knew someone with HIV/AIDS or who has died from the disease. A majority, 58 percent, also indicated that they believed the situation was a more urgent health problem than it was a few years ago. Their responses lent qualitative weight to the CDC data on black infection rates and provided a clear indication that the African-American community had finally awakened to the growing devastation wrought by AIDS.

The increased impact of the epidemic in black and brown communities would prove a challenge for traditional community-based AIDS organizations unfamiliar with the unique needs of their newer clientele.

AIDS and Community Mobilization

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 AfricanAmerican communities.

In Boundaries of Blackness, Cathy Cohen identifies two stages of AIDS activism.3 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. AUm 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 AfricanAmerican 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. 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 AfricanAmerican 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 percent 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.

Leaning on the 'Conscience of the Congress'4

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 HTV 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 Marine 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 7meeting, 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 AIDSparticularly 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 1999.6

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 HTV/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.

Continued Challenges In the Third Decade

Among states with HIV reporting, the CDC has shown a continued rise in HIV infection rates among African Americans. Cognizant of this threat, the CBC has remained attentive to the need to protect and expand the CBC AIDS Initiative. Under the leadership of Rep. Donna Christian Christiansen (D-VI), the CBC Health Brain Trust continues to work with grassroots activists and representatives of community-based organizations to identify continuing challenges of access, treatment, research and prevention in an effort to formulate and implement a legislative response. With the development of advanced drugs that prolong life, many in the public have been lulled into believing that the problem of HFWAIDS has been largely addressed. Unfortunately, glaring holes remain in terms of access to medical treatment, housing, and prevention services.

The Housing Opportunities for Persons With AIDS program (HOPWA), administered by the U.S. Department of Housing and Urban Development (HUD), is intended to provide temporary and permanent housing assistance to people living with AIDS (PLWA) whose illness places them at risk for homelessness due to the loss of income accompanying the inability to work. Unfortunately, while the ideal of the HOPWA program is laudable, its scope of services falls far short of the need. Only 49,000 people living with HIWAIDS were served by HOPWA in 1999." This is a small fraction of the 800,000 to 900,000 estimated persons living with HFV and the 300,000 estimated persons living with AIDS in the U.S. Out of the total number assisted in 1999, 50 percent were white, 44 percent were African American, 12 percent were of Hispanic origin, and 6 percent were American Indian/Alaskan native. The limited scope of HOPWA means that housing slots are in limited supply and that many are left on waiting lists or shut out entirely. The program's limitations complicates the lives of those it's supposed to help, many of whom face rising housing costs and limited affordable housing options in the areas where they live. Further, HUD does not have an adequate tracking mechanism to determine what happens to those who do receive temporary payment assistance after their 27 weeks of assistance has expired." This limited and haphazard approach to providing housing assistance increases the chances that those who the program is supposed to help, particularly people of color, will fall through the cracks.

Because of their exclusion from private health insurance and increased likelihood of living in poverty, African Americans with AIDS are more likely to rely on the Medicaid program for health care assistance. Indeed, Medicaid serves about 55 percent of all people living with AIDS and up to 90 percent of all children with AIDS in the U.S.8 Yet, the assistance Medicaid provides is deeply problematic because it does not provide funding that would enable recipients to gain access to the lifesaving treatment and drugs that prevent full-blown AIDS until an individual can show financial need and prove that he or she has already developed full-blown AIDS.

The problem with this backward approach is illustrated by a 1995 study in the New England Journal of Medicine.0 The study found that an HlV-infected individual's likelihood of progressing to full-blown status and dying from AIDS is not related to demographic factors like race, income, or gender but is instead a function of age, whether they had a low CD4 cell count (CD4 or t-cell counts measure the weakness of the immune system. A count below 200 means that an individual has developed full-blown AIDS) and were showing symptoms upon enrollment in the study. The study concluded that higher AIDS death rates among African Americans and women could more credibly be attributed to inadequate medical care than to biological differences among groups. In essence this study illustrates that when African Americans are finally eligible for Medicaid, they have little chance of surviving the disease for long. In essence, while providing services only when a person living with AIDS is near death may prove a cost-saving measure for federal and state Medicaid coffers, the institutional biases it represents drive down the survival rates of those African Americans forced to rely on Medicaid services.

Two additional studies illustrate the discriminatory nature of the health care available to people of color. A study published in the Archives of Internal Medicine found that Medicaid patients treated for AIDS-related Pneumocystis Carinii Pneumonia (PCP) were 75 percent more likely to die than those with private insurance.10 In addition, Medicaid patients, who are more likely to be African American and injection drug users, were dramatically less likely to receive the proper treatment for PCP or even to have their complication diagnosed. Those Medicaid patients who did receive proper treatment, received it later in their hospital stay than those PLWA who were privately insured. Findings from this study, have been corroborated by a more recent study, conducted by the Institute of Medicine, which found that African Americans had higher death rates due to pervasive discrimination that made them less likely to receive appropriate AIDS treatments.11

The AIDS Drug Assistance Program is another public program designed to help PLWA purchase expensive drug treatments that are the key to disease management and prolonging life. In 1999, 40 percent of individuals receiving assistance from this program were white, 31 percent were black and 24 percent were of Hispanic origin. ADAP is a critical program but access to its services varies from state to state. Because of the high costs of AIDS drugs, many states cap enrollment in the program creating waiting lists for drug assistance. There is also significant differences in formulary coverage with six states cap or restrict access to lifesaving protease inhibitors and antiretroviral therapies.12

In addition to the services provided by the Ryan White CARE Act, HOPWA, Medicaid, and ADAP comprise the components of America's system of care for PLWA. Evidence from a variety of sources show that, for minorities with HIV and AIDS, this system is a substandard "danger net" that denies them access to early treatment and care and provides them with a poor quality of care once they do receive assistance. The disparate outcomes are indicative of larger systemic problems in the U.S. health care system that grossly deny a majority of racial and ethnic minorities access and it illustrates the disconnect between the unique circumstances of minorities with HW/AIDS and the culturally biased policies that shape the HIV/AIDS infrastructure.

Since a diagnosis of HIV means a certain early death for African Americans as compared to diagnosed whites, the only way to stem higher mortality rates under the current system is by preventing HW infection in the first place. Prevention efforts, however, have been hampered by a ban on federal funding for needle exchange programs, by limited resources made available for substance abuse treatment, and by the absence of a coordinated and comprehensive national prevention program. Absent universal health coverage, the U.S. should at least establish a national system of care for people diagnosed with HIV/AIDS that standardizes treatment options and enables all persons living with HIV and AIDS to access care early, thereby increasing their chances for survival.

Obstacles to prevention are also presented by factors internal to the African-American community.

Despite advances in understanding about HW transmission, many African Americans continue to engage in risky behaviors and many black leaders-particularly faith based and traditional leaders-maintain biased attitudes about the epidemic and the people affected by it.13 It is important to note that resistance to behavioral changes and negative attitudes toward the disease are also widespread among other racial and ethnic groups in the U.S. and abroad. The continued prevalence of these factors, however, will hamper efforts to address the AIDS epidemic in a constructive fashion. While transformative leaders in the African-American community have done much to erase the stigma of AIDS, u increased involvement of pastors and other traditional leaders are still needed. Indeed, it will take nothing less than mass mobilization including widespread dissemination of prevention information and individual empowerment to attain the level of awareness that is needed to effectively combat the spread of AIDS.


Just as the historic struggle for equal access and equal opportunities for minorities in the U.S. has been influenced by the early dominance of white men of means, so has the modern fight for equal opportunity in AIDS treatment, service, and prevention. Early advocates for minority communities hard hit by the epidemic confronted the inadequacy of policy models designed to assist white gay men of means. These models would prove to be inappropriate for helping communities of color curb the spread of AIDS. Combined with a host of complicating factors like poverty, substance abuse problems, and exclusion from social insurance programs, African-American and Hispanic communities have been placed at a distinct disadvantage in their efforts to ward off the spread ofAIDS.

Despite these challenges, a nascent AIDS lobby indigenous to the African-American community organized in the 1990s to combat the challenges presented by the epidemic. Their mobilization and activism served as a catalyst for engaging political leaders on Capitol Hill and their expertise on the issues faced by African Americans with AIDS formed the basis for the CBC AIDS Initiative.

Ironically, the political maturity of minority AIDS community-based organizations comes at a time when mainstream media, political leaders, business leaders, and other opinion leaders have become increasingly focused on the international AIDS crisis. With an estimated 40 million people infected with the HIV worldwide, the challenges presented by AIDS abroad are enormous.16 The egregious infection rates in African countries illustrate a global disenfranchisement of poor people of color. In order to prevent mass annihilation of Africans throughout the Diaspora, it is probable that the next phase of political activity will focus on developing a global agenda that links the issues faced by black and brown people in the U.S. with those faced by black and brown people in the international arena.


1 Cathy Cohen, 1999. Boundaries of Blackness.

2 Centers for Disease Control. "HIV/AIDS Among African Americans," March 15, 2002.

3 Cohen, Cathy. 1999. The Boundaries of Blackness: AIDS and the Breakdown of Black Politics. Chicago: The University of Chicago Press.

4 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.

5 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.

6 Dave Pollack, et al. National Evaluation of HOPWA Program. Washington, DC: The Office of Policy Development and Research, Department of Housing and Urban Development, 2000.

7 Ibid.

8 Centers for Medicaid and Medicare Services. Medicaid and AIDS and HIV Infection, Jan. 2002.

9 "Race, sex, drug use, and progression of human immunodeficiency virus disease," by Dr. Chaisson, Jeanne C. Keruly, B.S.N., and Richard D. Moore, M.D., M.Sc., in the September 21,1995 New England Journal of Medicine 333(12), pp. 751-756.

10 "Racial differences in care among hospitalized patients with Pneumocystis carinii pneumonia in Chicago, New York, Los Angeles, Miami, and Raleigh-Durham," by Drs. Bennett and Conn, Ronnie D. Homer, Ph.D., and others, in the August 7/21, 1995 issue of the Archives of Internal Medicine 155, pp. 1586-1592.

11 Brian D. Smedley, Adrienne Y. Stith, and Alan R. Nelson, Eds. Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care. National Academy of Sciences Institute of Medicine, 2002.

12 Arnold Doyle and Richard Jefferys, National ADAP Monitoring Project Annual Report, March 2000.

13 Cohen, 1999.

14 Rockeymoore, 2000.

15 Joint United Nations Programme on HIV/AIDS, "AIDS Epidemic Update." December 2001.

[Author Affiliation]

MAYA ROCKEYMOORE is Senior Resident Scholar at the National Urban League's Institute for Opportunity and Equality.

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