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History’s Burden

History’s Burden
After decades of neglect, an academic research agenda is being built around health disparities
By Ronald Roach

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It’s been described as the leading civil rights issue of the day. The persistence of racial disparities in health outcomes, such as mortality rates from cancer and heart disease, weighs more heavily on African Americans in comparison to Whites. For example, the prevalence of diabetes in African Americans is approximately 70 percent higher than Whites. For men and women combined, African Americans have a cancer death rate about 35 percent higher than that for Whites. African American women develop breast cancer less often than White women, but have a higher mortality rate. African American women have higher cervical cancer death rates than White women. The incidence rate for lung cancer in African American men is about 50 percent higher than in White men and the death rate is about 27 percent higher. The prostate cancer mortality rate for African American men is more than twice that of White men.

“We have known for years that Americans of color die before our time from a wide range of illnesses. And we have known that Black mortality rates are higher than those of Caucasians,” Congressional Black Caucus chairman Rep. Elijah Cummings, .D-Md., has said.

In recent years, the federal government has developed programs to reduce racial disparities in health outcomes and health-care treatment. The efforts, coming after decades of neglect by what some perceive as a racially insensitive health-care establishment in the United States, is underwriting an academic research agenda around health disparities. The mission of the health disparities research is focused upon bettering outcomes in six key areas: infant mortality, cancer, cardiovascular disease, diabetes, HIV infection and AIDS, and childhood immunizations.

For historically Black institutions, health disparities research is helping to invigorate a longstanding commitment Black schools, particularly the historically Black medical schools, have had for most of their history. A number of HBCUs are building new research programs altogether, and others are beefing up their overall existing research capacity and infrastructure.

For majority White schools, some are using the health disparities funding to expand upon their existing but modest minority health initiatives while others are undertaking Black, Latino and American Indian outreach for the first time in their research programs.

“Scientists want to do research where the money is,” says Dr. Marian Johnson-Thompson, the director of education and biomedical research development for the National Institute of Environmental Health Sciences (NIEHS).

History’s Burdens

Scholars and public officials say the current push by the federal government in health disparities research has to contend with the legacy the federal government established with the infamous Tuskegee syphilis study. Conducted between 1932 and 1972 by the U.S. Public Health Service, the Tuskegee study included 399 Black men with syphilis and 201 men without the disease in Macon County, Ala. The 399 men with syphilis were never told they had the disease and medical treatment was not provided to them. In 1997, President Clinton issued a formal apology to the surviving participants of the study.

That study is said to have caused many African Americans to be reluctant to participate in public health studies because of a mistrust of the medical profession. Scholars say that the Tuskegee study is a major reason why fewer African Americans participate in clinical trials and organ donation efforts.

“We have to re-establish trust,” says Dr. Stephen Thomas, director at the University of Pittsburgh’s Center for Minority Health, of the government and academic institutions. “Those Black men who were in the Tuskegee study trusted their doctors.”

Traditionally, the issue of health disparities had not attracted a great deal of interest outside of the minority-serving institutions. Black schools, in particular, have long borne the heaviest burden to improve African American health-care status. Scholars typically point to the high number of Black doctors produced by the three historically Black medical schools — Meharry Medical College, Morehouse School of Medicine and the Howard University College of Medicine. Roughly, 50 percent of Black doctors graduate from three of the nation’s 126 medical schools.

Though having been active in researching health disparities prior to the federal government’s current push, the Black medical schools have taken on a wide scope of research activities into health disparities. The scope ranges from health promotion to clinical trials to highly advanced scientific studies on diseases given the wide range of expertise at the disposal of medical schools. Though its four-year M.D. program is jointly run with the University of California-Los Angeles, the Charles R. Drew University, which is considered a minority-serving institution, has also been actively investigating minority health and health disparities.

At Meharry Medical College in Nashville, Tenn., the wide scope in health disparities research is borne out by its programs in HIV/AIDS, cancer, dental health, alcohol abuse and asthma. The Morehouse and Howard medical schools have also taken on high-profile health disparities research programs in cardiovascular disease, breast cancer, prostate cancer and kidney disease.

With academic researchers pointing out the lack of minority participation in medical research and the evidence of health disparities, the federal government took steps to mandate the inclusion of women and minorities in health and medical research in the early 1990s. Later, the Clinton administration took aim at health disparities and announced a campaign to have the federal government eliminate racial disparities in health outcomes by 2010.

Signed into law by President Clinton in 2000, the Minority Health and Health Disparities Research and Education Act authorized the creation of the National Center on Minority Health and Health Disparities at the National Institutes of Health (NIH). Dr. John Ruffin directs the center, which makes health disparity research awards and provides guidance to the NIH centers and institutes that also support research aimed at reducing health disparities.

“This legislation provides long overdue attention to the dramatic disparities in the incidence of disease and health-care outcomes in minorities as compared to the overall population,” President Clinton said in a White House bill signing ceremony. “Eliminating disparities will require additional research and new approaches, but in the process of addressing the health needs of our most vulnerable populations, we will improve the nation’s health-care system for everyone.”

The HBCU Position

Historically Black schools — North Carolina Central University, Shaw University and Winston-Salem State University — are known historically as liberal arts and teacher colleges. Because these North Carolina institutions took a proactive approach to participating in minority health initiatives, they have positioned themselves to take on significant research opportunities, according to observers.

Since the creation of the National Center on Minority Health and Health Disparities (NCMHD), the three schools have established several research partnerships and collaborations with the University of North Carolina-Chapel Hill, Wake Forest University and Duke University. For example, Shaw University and UNC-Chapel Hill are working together in a partnership to address the elimination of health disparities among minorities that will receive $6 million over five years from the NCMHD. Researchers from UNC-Chapel Hill, North Carolina Central and Winston-Salem State have received NIH grants totaling $1.5 million from the National Institute of Nursing Research to create a Center for Innovation in Health Disparities Research.

“Research has been very important to us. We’re in the transition of going from being a teacher’s college to being a master’s research institution,” says Dr. Phyllis Gray-Ray, the dean of graduate studies and .research at Winston-Salem State.

“I see a tremendous response by the historically Black schools. They’re doing very well,” Johnson-Thompson of NIEHS says.

She notes that while schools known for their research prowess, such as Howard University, Florida A&M and Jackson State University, have taken on major programs, a number of smaller and less research-focused schools are stepping up and jumping into the research arena. Typically, schools without or with limited health profession programs will involve their social work and education schools in partnerships with majority White institutions or other HBCUs in research collaboration.

Johnson-Thompson says some of the research awards coming out of the NIH centers and institutes are geared toward helping schools develop the infrastructure that allows faculty members to pursue laboratory-based research. The smaller schools tend to have educational and social relationships with local Black communities that aid studies on medical treatments and the effects of health education campaigns.

Johnson-Thompson explains that while there has been a great response to programs by the research-dominant HBCUs, as well as a number of the aggressive smaller institutions, there could be more participation in health disparities research by historically Black institutions. She says there are some schools that could be competitive, but their leadership has not quite grasped what it takes to ready their institutions for health research.

“I do see in some pockets that there are not enough takers. Every NIH institute and center has a health disparities program so that means that they are trying to engage HBCUs in the research,” Johnson-Thompson says.

Cultivating relationships

Thomas of the University of Pittsburgh likes to tell the story of how during his first few weeks as the director of the school’s Center for Minority Health in 2000, he met with the superintendent of the majority Black Pittsburgh city schools. The school superintendent, the first African American to hold the job, told Thomas that 12,000 school kids were facing suspension due to strict orders by the health department requiring the students to have measles booster shots.

Learning from the superintendent that the school system had no contacts at Pitt’s school of public health despite the system headquarters being located next door to the Pitt campus, Thomas appealed to university officials to lend its support to spearhead an immunization drive.

“Within 30 days, 90 percent of those students facing suspension were in compliance with the health department,” Thomas says. “Sometimes, you have to do what the people need you to do regardless of what your research priorities are.”

Thomas believes the immunization drive established an entirely new relationship between the University of Pittsburgh and the Black community in Pittsburgh, and set the stage for an aggressive health disparities research program by the institution.

“As a result of that success, everything began to fall into place,” Thomas notes.

In order to conduct health disparities research, majority White institutions are having to carefully cultivate relationships in Black and Latino communities that previously did not exist or stood on shaky ground.

“One of the complaints we heard from community representatives was that when clinical research was undertaken the school later failed to inform participants and representatives of the results,” Thomas says of the relationship Pitt researchers had with the local Black community.

Under Thomas, the Center for Minority Health at Pitt has developed a $8 million research portfolio, including a $6 million commitment over five years through the recently launched Centers of Excellence in Partnerships for Community Outreach, Research on Health Disparities and Training (Project EXPORT) program by NCMHD. The Project EXPORT awards are supporting health disparities research at 26 institutions, including nine HBCUs.

“We have programs where we work through the churches, the hair salons and the barbershops to disseminate health information,” Thomas says of the center that was originally established in 1994.

Dr. Lee Green, a professor of health and kinesiology at Texas A&M University, says health disparities research represents a significant opportunity for institutions like his that have never focused on minority health issues. The board of regents at Texas A&M has recently approved plans by the university to establish a health disparities research center. Such a center is expected to allow researchers to collaborate with researchers at historically Black Prairie View A&M University and the state’s Hispanic-serving institutions, according to Green.

He believes that schools, such as Texas A&M, which are newcomers to minority health and health disparities research typically have not focused on those areas because they didn’t have faculty members who were interested in the research. Texas A&M hired Green away from the University of Alabama-Birmingham in 2002 so that he could help the school establish a health disparities program.

“This is a new initiative for Texas A&M. We see it as a way to build relationships with the Black and Latino communities and the minority-serving schools,” Green says.

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