Race, Health Care and the Law 
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CONTINUED CHALLENGES IN THE THIRD DECADE

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Vernellia R. Randall
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 Maya Rockeymoore, Ph.D.

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)

 

 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 problem of HIV/AIDS 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 HIV/AIDS were served by HOPWA in 1999.[1]  This is a small fraction of the 800,000 to 900,000 estimated persons living with HIV 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, forty-four 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 its 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.[2]  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.[3] 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.[4]  The study found that an HIV-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 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.[5]  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.[6]

             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.[7]

            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 HIV/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 HIV 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 HIV 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.[8]  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,[9] 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.



[1] 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.

[2] Ibid.

[3] Centers for Medicaid and Medicare Services.  Medicaid and AIDS and HIV Infection, Jan. 2002.

[4] "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.

[5] "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 Cohn, Ronnie D. Horner, Ph.D., and others, in the August 7/21, 1995 issue of the Archives of Internal Medicine 155, pp. 1586-1592.

[6] 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.

[7] Arnold Doyle and Richard Jefferys, National ADAP Monitoring Project Annual Report, March 2000.

[8] Cohen, 1999.

[9] Rockeymoore, 2000.

 

 

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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
300 College Park 
Dayton, OH 45469-2772
Email: randall@udayton.edu

 

Last Updated:
 03/10/2010

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