Racism Has An Impact On Research And Health Care Policy

Illustrator: John Overmyer Benign neglect, or ignoring an often undesirable situation rather than dealing with it, is an attitude with which minorities are quite familiar. Couple it with politics and racism, and you face a system that has been unresponsive to the educational, research, and health care needs of minorities and the poor in the United States. Few mainstream research institutions or government agencies have addressed minority health in a proactive manner. Most take a reactive approach-because someone pressures them, or in response to recent laws requiring involvement of women and minorities in clinical trials, or because they are trying to secure additional money targeted for minority health issues. A few institutions, such as the National Heart, Lung, and Blood Institute, have had a true interest in addressing health issues in minority populations. This is not say that other effective research efforts dealing with minority populations are not taking place. On the contrary, they are. However, most efforts lack a clear focus on minority health issues. As a result, they have been neither culturally competent nor culturally relevant. When the staff of a hospital deals with the health problems of minority patients without the training, insight, or sensitivity needed to approach these individuals, efforts are doomed to failure. You might not see this as racism, but I do. As a scientist who happens to be a member of a minority group, I am especially concerned about this lasting impact of racism and benign neglect on the health of minorities and the medically underserved. Despite protests to the contrary, minorities who act on this concern are generally stereotyped by some in the scientific community as not being real scientists. The question is: Can you judge the content of someone's mind when you have already stereotyped him or her on the basis of race? Supreme Court Justice Thurgood Marshall once stated that he had never been anyplace in the U.S. where he had to put his hand up in front of his face to know he was black. He was alluding to the fact that lurking in the minds of many Americans was the idea of the fundamental inferiority of minorities, especially African Americans. This attitude still exists today, even in the areas of health and education. The discipline of science knows no color. The pursuit of determining a reason for a situation should not be different. Yet when minorities try to address the disparities of one group in relationship to another, it is viewed as affirmative action. Ultimately, this limits the number of individuals-especially minorities-who investigate these health disparities. Is this a product of stereotyping and the ultimate value one places on the health of minorities and the medically underserved? In most cases, it is. For example, cancer is a major cause of death in minority populations, yet we know very little about this disease in these populations. We can seriously address the need to involve more minorities in sciences. I need only point to the Meyerhoff Scholars' Program run by Freeman A. Hrabowski III at the University of Maryland, Baltimore County, as an example. Among the undergraduates at this majority institution are the young Meyerhoff scholars, who are both valued and mentored. Within this group are academic stars with perfect math SAT scores, athletes who never earned below an A through high school and college, kids under 20 years of age whose work has been published in scholarly journals, and students who regularly earn A's in such courses as genetics and organic chemistry. But don't assume that all of these students are from the top prep schools. Many of these students are minorities from poor families and went to public schools in inner-city or rural communities. Given a nurturing environment, these students-like all students-can succeed. Unfortunately, such programs that value and mentor minority students do not exist across the country. We talk about the lack of minority scientists and pipeline issues, yet such programs are rarely highlighted or, worse, not duplicated. The lack of diversity does impact research agendas and national health policy issues. It accounts for the continuing problems our leading research institutions face in terms of the recruitment/retention of minority researchers, the recruitment of minorities and the medically underserved to clinical trials, as well as the involvement of minority scientists in health issues directly related to minority communities. If we are going to address the health crisis in medically underserved communities effectively, we are going to need more programs like Meyerhoff that mentor and build self-confidence. Equally important is redefining how we value the efforts of minority scientists and physicians who address health issues involving the medically underserved. Minorities who have become involved in such efforts are generally made to feel unequal in the eyes of scientific colleagues who don't value their contributions. For example, their work in minority communities is less valued when compared with that of white scientists, who are generally praised for their scientific efforts in these communities. This inequity must be seriously addressed. In wearing two hats at the University of Texas M.D. Anderson Cancer Center-as director of the Experimental Gynecology-Endocrinology Laboratory and as an activist-I have faced all of the challenges mentioned. I took on the role of activist against the advice of numerous friends and colleagues who said that I would be jeopardizing my career as a scientist. Knowing that few minority scientists were in a position to focus on the cancer crisis occurring in underserved communities, I took on the challenge. I can personally say that the advice I received reflects the perception and attitude that any activity involving minorities-even activities dealing with health issues-are not valued. Unfortunately, the health care of minorities is adversely affected by this lack of value. At the professional level, devaluation revolves around the attitude that if you are involved in this effort, then you don't have time or you can't compete in the scientific arena. Value is placed on the number of papers you produce and the not the lives you might save! I grew up with science in my blood: My mother was a junior high school science teacher. I was sure that I could prove all of my friends wrong, that both research and activism could be performed equally well. Little did I realize the full impact of turning my attention to the health needs of minorities and the medically underserved. However, as Henry David Thoreau wrote: "If one advances confidently in the direction of his dreams, and endeavors to live the life which he has imagined, he will meet with success." Unfortunately, Thoreau did not live in 1990s America. This is not to say that I have not been successful. But the price of success has been one I would not wish on anyone. Success for me has had many faces: the opportunity to organize the Biennial Symposium Series (BSS) on Minorities, the Medically Underserved, and Cancer for the past 10 years as well as the recent accomplishments of the Intercultural Cancer Council (ICC). The BSS has become one of the most successful meetings attempting to provide a stage on which to spotlight the disproportionate incidence of cancer morbidity and mortality in minority and medically underserved populations in the U.S. Although in existence for only about 18 months, the ICC has attracted much attention to the issues surrounding cancer and the medically underserved, including coverage in the print media, professional society publications, and the Congressional Record. All of this occurred while I maintained an active and successful basic and clinical research program. Unfortunately, the successes of the ICC and the BSS have cast a negative shadow over the research program. In 1996 I was nominated and selected by the University of Texas M.D. Anderson Faculty Senate for the Faculty Achievement Award in Cancer Prevention. The perception that soon surfaced was that the award was given because it was the "politically correct" thing to do and not for meritorious accomplishments. This might sound personal; to some extent, it is. However, what happened to me occurs more often to scientists of color than people would like to admit. These indignities, this lack of true recognition, occurs on a daily basis, and discourages many from speaking out and taking a stand. Lovell Jones is a professor of gynecologic oncology, molecular biology, and biochemistry and director of experimental gynecology/endocrinology at the University of Texas M.D. Anderson Cancer Center in Houston. The ICC and BSS has been successful because of the unique blend of individuals willing to step forward to speak with one voice. These individuals believe that we all have something to contribute and that together we can make a difference. However, the BSS would not have survived its infancy if two special individuals had not stepped forward to accept part of the risk: Joseph Stewart at Kellogg Co. of Battle Creek, Mich., and Armin Weinberg, director of the Center for Cancer Control Research at Baylor College of Medicine. They were willing to accept the risk of being labeled as "troublemakers." Unfortunately, few minority scientists are willing to take this risk, and understandably so. Therefore, the system that fails to address the health care needs of their fellow citizens is seldom challenged in an effective manner. The ultimate result is benign neglect. Benign neglect can be hazardous to your health! For example, a group of African American breast cancer survivors have been interviewed for eligibility for a clinical study. Like my mother, they were well-educated, middle-income individuals, and most had had radical or modified radical mastectomies with no follow-up care. This group of women had a large number of their friends with breast cancer die this past year. I don't know whether all of the African American breast cancer survivors from this group did not have follow-up care. Does a high mortality rate in a small group lead one to speculate about the level of care? On the other hand, one might say that other factors were at work. However, at the same time, most of the white females from varying economic backgrounds who had the same type of surgery were enrolled in the same study, and most had follow-up care. The impact of stereotyping/value/racism on the health of America is not just my perception: It is my reality. If you tie people's value to their skin color, their health is not a separate issue. For me personally, I had the unique opportunity to be valued as a human being. That occurred on a recent trip to Australia. Imagine, giving a presentation on the health of a human population and not having it stereotyped as minority stuff, but having it truly valued. If only this could occur in America! The ultimate result would be that all of the special efforts to address the issues of minorities and the medically underserved would be null and void and we would only be addressing the health of all Americans as human beings!

Racism Has An Impact On Research And Health Care Policy

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