Race Matters Health CareExperts say eliminating racial and ethnic health disparities is the civil rights issue of our day
WASHINGTONWhen the National Academies’ Institute of Medicine released its report earlier this year documenting that minorities, regardless of income, education and access, were discriminated against in health care, many African Americans in the medical and health care fields simply yawned. “Tell me something I don’t know” was the overriding sentiment among Black health care professionals and the Black community in general. For years, these professionals have been arguing the same thing, pointing out racial and ethnic disparities in access to quality health care, as well as disparities in incidence rates, mortality rates and treatments for certain illnesses. And in many cases, they have attributed those disparities to racial discrimination. “To assume that the health care delivery system is somehow immune from the social factors that have shaped this society is inaccurate,” says Dr. Stephen B. Thomas, director of the Center for Minority Health at the University of Pittsburgh.For Thomas, the issue of health disparities is one of several racialized issues such as affirmative action and school desegregation by which the nation is polarized. “It is the same kind of racism that we saw when Blacks were in the streets being attacked by dogs and fire hoses,” says Thomas, evoking the civil rights movement of the 1960s. “The struggle for freedom that began with lunch counters and sit-ins and the right to live where you want, is now being waged in our hospitals, in our clinics, in our neighborhoods.” Such rhetoric signals a strongly held conviction by Thomas and others in the medical and health care fields that the problem of racial and ethnic disparities in health care is the key civil rights issue of today.“It is the political issue of the 21st century,” says Amri Johnson, a trained epidemiologist and CEO of WellSolve Health Research Network, an Atlanta-based company that works to increase diversity in the health research work force and industry. Providing 100 percent equity in access, treatment, care and information in health care is no longer an option, Johnson says.In labeling health inequities a civil rights issue, Thomas, Johnson and others emphasize it is an issue that extends beyond those individual minority communities disproportionately affected by certain diseases to the entire nation, and even the world. Just as economists contend that the growing disparity in wealth between nations weakens the entire world, Thomas says the disparity in health between the “super-rich” and those on the “bottom rungs” weakens the entire nation.Johnson agrees. “It is not just an issue for educational institutions, or the government, or the private or public sectors,” he says. “Everybody is going to either be hurt or benefit from this.” On the road to reducing disparitiesRecognizing the impact of health disparities on the entire nation, President Bill Clinton and the U.S. Department of Health and Human Services (HHS) launched the Initiative to Eliminate Racial and Ethnic Disparities in Health in 1998. The initiative targets six areas of health disparity, including cancer screening and management, cardiovascular disease, diabetes, infant mortality, HIV/AIDS and child and adult immunizations. HHS has adopted the ambitious goal of significantly reducing the disparities by 2010. In each of the initiative’s target areas, communities of color are disproportionately affected. For instance, African American men and women have a cancer death rate about 35 percent higher than Whites. African American women are more likely to die of breast cancer than women of any other racial or ethnic group, and the prostate cancer mortality rate for Black men is more than twice that of White men. Similarly, in 1999, rates of death from cardiovascular disease were 29 percent higher among African American adults than White adults, and death rates from strokes were 40 percent higher. African Americans are twice as likely, and Hispanics 1.8 times more likely, to have diagnosed diabetes. And African American babies are 2.5 times more likely to be victims of infant mortality. The racial and ethnic disparities in HIV/AIDS are even more alarming, considering that in 2000 more African Americans were reported with AIDS than any other racial/ethnic group, according to the Centers for Disease Control and Prevention (CDC). It is an increase that has intensified just in the past few years. In 1999, Blacks and Hispanics represented close to 67 percent of AIDS cases but only 25 percent of the total population, says Dr. Lauren Wood, who is a principal investigator at the National Institutes of Health’s National Cancer Institute. But when we look back at 1986, she says, racial and ethnic minorities only represented approximately 40 percent of AIDS cases. In just less than 13 years Black and Hispanics now represent close to 70 percent, she says. And the future face of HIV/AIDS, according to Wood and others, is that of adolescents, with minority females being disproportionately represented. A study published by the CDC in 1998 found that young disadvantaged women, particularly African American women, were being infected with HIV at younger ages and at higher rates than their male counterparts. As well, HIV prevalence among young African American women was 7 times higher than for young White women, and 8 times higher than for young Hispanic women. “Don’t happen to be a Black adolescent female living in an urban area,” Wood says. “That’s a trifecta that poses a huge epidemiological risk if you are sexually active for acquiring HIV infection.” High-risk behaviors, substance abuse and lack of awareness about HIV prevention are some of the reasons experts cite for the higher rates.Although it is not one of HHS’ target areas, the disparity in access to health insurance and coverage is a key concern for those dedicated to eliminating inequities in health care. “Forty-five million Americans have no health insurance, and as many as 50 percent of those are minorities,” says Aranthan S. Jones II, health legislative assistant for the Hon. Donna M. Christian-Christensen, the Virgin Islands delegate in the U.S. House of Representatives. The problem is aggravated by the fact that minorities that do have health insurance are more likely to be in lower-end plans, paying more out-of-pocket expenses, and less likely to be referred to specialists, he says.Universal health care access is at the top of the agenda of the Congressional Black Caucus Health Braintrust, Jones says. The group has created an “uninsured coalition” led by Christian-Christensen, who chairs the CBC Health Braintrust, and Rep. John Conyers, D-Mich. The coalition is pushing several pieces of legislation, including HR 99, which calls for Congress to guarantee universal health care access by 2007, and HR 2743, which calls for an expansion of the Medicare and Medicaid framework to the entire nation.
In search of minority researchersJones and Wood were among several presenters last month at a seminar in the Washington area focusing on research strategies to eliminate health disparities. Sponsored by the National Association for Equal Opportunity in Higher Education (NAFEO) and WellSolve, the seminar focused on finding ways to increase the number of minority investigators and clinical researchers, as well as on the role and responsibility of minority-serving institutions in eliminating health disparities.“Research drives the health agenda,” Jones says. “We need minority researchers to highlight those issues that particularly affect minority populations.”Although the number of minority medical doctors has increased over the years, many medical school graduates do not pursue careers in research. According to the American Association of Medical Colleges, between 1950 and 1997 only 250 African American medical school graduates have pursued research training and indicated research as their primary activity. Other minority groups were equally underrepresented: 302 Asians, 148 Hispanics and only 6 American Indians. (See accompanying chart.)“Historically the focus has been on service, because the need has been so great,” says Wood, referring to the long need for more minority practicing physicians to serve minority communities. But those who train health care professionals also need to emphasize that “real service to the community is going to come from doing research on what impacts that community,” Wood adds.Similarly, minorities are underrepresented among those pursuing master’s and doctoral degrees in schools of public health. And most minority students that are pursuing public health degrees are concentrated in health education or health management programs and not biomedical health, the major that produces researchers, says Johnson of WellSolve. Challenges facing the public health education community also emerged during discussions last month at a two-day conference sponsored by the Johns Hopkins Urban Health Institute in Baltimore on the role of population-based medicine in reducing health disparities. “The problem with public health is that no one wants to go into the community. They want to focus more on epidemiological research. We need students who are going to foot the pavement,” says Dr. Freddie Asinor, associate director of the institute.For those who want to accept the challenge, there are existing programs such as the Health Careers Opportunity Program (HCOP) and Centers for Excellence (COE) that seek to encourage minority students to pursue careers in academic research and public health. Both of these programs are within HHS’ Department of Health Resources and Services Administration (HRSA). There are also programs within HRSA that offer financial support, including scholarships for disadvantaged students and loan repayment programs that serve as financial incentives for degree-trained health professionals to pursue academic careers. NIH’s newly established National Center for Minority Health and Health Disparities (NCMHD) also offers loan repayment programs as incentive for health professionals to engage in clinical research and research directly relevant to health disparities. Participants can get up to $35,000 a year to use toward student loan debt.And NAFEO’s health education division sponsors a summer internship program that places students at historically Black colleges and universities in positions at the Department of Health and Human Services and other government agencies.
Improving quality of careLike Asinor, many of the presenters at the Baltimore conference highlighted the overall importance of community involvement in improving the quality of care for minorities. That involvement ranges from the establishment of more community-based health centers to employing those who already live and work in communities targeted for improvement. “The community that carries the burden of the disease must be a partner,” says Thomas, who closed out the Baltimore conference with his presentation “The Color Line: Race Matters in the Elimination of Disparities in HIV/AIDS.”Thomas and others say that community involvement is crucial to increasing the number of minority participants in clinical research trials. Coupled with the dearth of minority researchers and investigators, the issue is one that virtually guarantees dire implications in care and treatment for minority communities for years to come. The reality is that not only are there few minorities to ask the questions that particularly affect people of color, there are few minorities to serve as participants in the process of finding the answers to those questions.
FEAR of clinical trialsA study published in the New England Journal of Medicine in early May underscores the impact of not participating in research trials on people of color. According to the study, Black and Hispanic patients infected with HIV were less likely than Whites to participate in clinical trials of new treatments or receive experimental drugs.“Not participating in clinical research trials in the mid- to late 1990s cost a whole lot of women, a whole lot of African Americans and Hispanic individuals, literally to lose their lives because they did not have access to the newest, most potent drugs,” Wood says.For many in the African American community, the mere mention of clinical trials evokes the infamous Tuskegee Syphilis Study, which Thomas terms the “longest sustained public non-therapeutic experiment on human beings in the history of medicine.” And even though Clinton apologized in 1997 on behalf of the U.S. government for the study, more than six decades after the study began and two decades after it was exposed, the distrust remains. “Today, Tuskegee transcends its historical time and geographic context to emerge as the metaphor for racism in the context of research,” Thomas says.Yet, Thomas encourages those in the field to not run away from Tuskegee, but to understand it and understand how its legacy influences the thinking of many people of color.At the Center for Minority Health in Pittsburgh, Thomas believes they have found a solution to combating that distrust and the overall problem of improving health care in minority communities.“It is a solution that requires those in the health care field to work outside defined roles of hospital worker, etc. It requires that we see ourselves as part of the community that we seek to serve.” Such thinking lies behind the center’s non-traditional initiatives, which involve taking the message of health and disease prevention away from the center’s walls and into the institutions that make up the backbone of the community, such as churches, schools and even barbershops.Last month, the center mounted the African American Health Promotion Campaign, an eight-year initiative to give community members the capacity to control their own health. And each Sunday last month, the center took its message to a different church in the local area, complete with a sermon on health care and a primary care unit on wheels to conduct health care screenings on the spot. “It’s about old-fashion coalition building,” Thomas says. “And, it looks like the civil rights movement — working in churches, getting people working together around the promotion of health and preventing disease.”
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