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January 11, 2001

ONE ON ONE with Stephen Thomas: Public health professor sees progress toward eliminating racial and ethnic health disparities

Gazing from a window at Pitt's Graduate School of Public Health (GSPH) at the hospitals and Health Sciences schools that dominate the Oakland skyline, Stephen B. Thomas observes: "In those buildings are some of the world's leading health researchers. And yet, in neighborhoods that are almost literally in the shadows of those buildings, people are dying of diseases that are easily treatable or preventable.

"That" Thomas declares, "is no longer scientifically or morally acceptable."

Thomas, 47, came to Pittsburgh in August, after seven years as director of Emory University's Institute for Minority Health Research, to head GSPH's Center for Minority Health. "One of the center's chief missions," he says, "is to build bridges so we can apply the scientific knowledge and expertise at this University to health problems in the communities that are in greatest need of that knowledge," including African-American neighborhoods near Pitt.

This week, the Center for Minority Health — in conjunction with the National Institutes of Health's (NIH) Office of Disease Prevention — is convening a summit here of minority health leaders and scholars from around the United States. The theme of the summit, which began yesterday, Jan. 10, and continues through Jan 12: eliminating racial and ethnic health disparities.

According to the NIH, the death rate from cardiovascular disease is 40 percent higher for African-Americans than it is for whites. For all cancers, the death rate among blacks is 30 percent higher than for whites. The HIV/AIDS death rate for blacks is seven times what it is for whites.

"What is so perplexing and frustrating," Thomas says, "is that we know how to prevent and treat these conditions. Cardiovascular disease. Diabetes. Infant mortality. HIV-AIDS, as devastating as it is, is totally preventable. Many forms of cancer are preventable or can be treated early."

Thomas was a teenager, working as a respiratory therapist (a job that, at the time, required no formal training), when he first encountered people dying of preventable diseases. "I helped to treat a lot of people dying of chronic obstructive lung disease, the results of 20 or 30 years of smoking. I saw first-hand how extremely effective medical science can be in the end stages of life. But what kind of life were we saving these people for? A very crippled existence. I felt that, if I was going to be a health care professional, I wanted to get involved earlier than at the end of the line."

His epiphany came during a 1976 visit to the People's Republic of China. Thomas, an Ohio State undergraduate at the time, was the only African-American among 20 U.S. students on a cultural exchange program. China was extolling the virtues of its "barefoot doctors" — public health workers, trained in acupuncture and herbal medicine, sent to the countryside to care for peasant populations. "In other words, low-tech, high-impact health care," Thomas says. "It was all very idealistic, but I was captivated. When I returned to the United States, I realized that prevention was a legitimate way to focus one's career. I discovered the field of public health, and I've never looked back."

Thomas grew up in Columbus, Ohio, one of six children. "My father was an accountant and my mother was a nurse, so I was always being exposed to clinical kinds of things, seeing her come home every day wearing her white nurse's uniform and one of those starched nurse's hats that they wore back then." Today, Thomas lives in Highland Park with his wife, GSPH associate professor Sandra Quinn, and his stepson, Brian Quinn, 16. This summer, for the fourth consecutive year, Thomas and his stepson will participate in a cattle drive in Wyoming. "It's hard work," Thomas says, "herding 500 head of cattle from their winter grazing lands up to summer grazing lands in the mountains, but Brian and I both love it."

This week, Thomas was interviewed by University Times Assistant Editor Bruce Steele.

University Times: Why do so many African-Americans fear and distrust the medical community?

Thomas: One of the things I've discovered through my research is that, among many African-Americans, there is a genuine concern that the health care delivery system will not treat them fairly. Much of that fear and mistrust is rooted in the continuing legacy of the Tuskegee Syphilis Study, which took place from 1932 to 1972. It was the longest non-therapeutic experiment on human beings in the history of medicine, and it was stopped following newspaper reports that nearly 400 black sharecroppers from Alabama had gone untreated [by U.S. public health officials] for syphilis, even though a treatment for syphilis was available.

Out of that came Congressional hearings and new guidelines and regulations for protection of human subjects in research. But then, unfortunately, the Tuskegee legacy did not become part of the culture of training researchers and health professionals. So we kind of forgot. Then the AIDS epidemic hit in 1981. That required us to go into communities and mobilize people to do what we knew would prevent the spread of the disease, and to test people for HIV. That's when my research team discovered that this legacy of Tuskegee was still having its impact. African-Americans were refusing to be tested for HIV. Many believed that AIDS was a man-made virus designed to eliminate black people. Since that time, our research has documented that this fear of the medical community is not limited to AIDS, but that it has its impact in other areas such as not seeing a doctor on a regular basis or taking medications.

That's the patient side of the equation. On the provider side, a growing body of evidence suggests that there is a subtle form of racial bias in the doctor's office, that two patients coming in with the same symptoms get diagnosed differently or receive different treatment options based on their race or gender.

As you said, the Tuskegee study gained notoriety in the early 1970s. Were African-Americans less reluctant to participate in clinical trials or seek medical treatment prior to that?

I don't know if the data is there to give a definite answer to that question. One thing we do know is that in 1932, the men who joined the Tuskegee study did not know they were joining a research study. They thought they were getting treatment, and they showed up voluntarily in droves. Those men trusted the doctors. The irony is that today we're dealing with diseases that are preventable and treatable with segments of our population who don't trust doctors. Whereas, in the 1930s, when this egregious event took place, there was a blind trust. This trust that once was given unconditionally now must be earned.

I think that the presidential apology on May 16, 1997 — when the president of the United States apologized on behalf of the American government to the eight remaining survivors of the Tuskegee study — provided the opportunity for a new beginning. President Clinton apologized to the men who actually suffered, and they accepted the apology. While a lot of people are still understandably angry over what happened in the Tuskegee study, we need to move forward. In order to eliminate ethnic and racial health disparities, we have to increase the participation of women and minorities in clinical and public health research.

How do you counter their reluctance and mistrust? What's your sales pitch?

Let's take the example of breast cancer. More white women develop breast cancer than black women, but more black women die from it. In order to understand why this disparity exists, black women need to be part of research studies. Is it biology? Are black women's bodies so different from their white counterparts' bodies that they have different kinds of cancer and die? Or is it, as I believe, that fear and misinformation are preventing black women from accessing care early enough? That black women who are diagnosed with tumors are not offered the interventions that can make a difference? To answer these questions, we need to conduct research. That's my pitch.

Why are African-American diabetics more likely than white diabetics to have their fingers and feet amputated? Those kinds of disparities disappear among blacks and whites who participate in clinical research trials. Why? Because everybody's getting the same kind of treatment. I suggest to people that, by participating in clinical research, you'll be getting state-of-the-art care.

Part of the solution lies in being offered the opportunity. Some African-Americans don't enroll in these studies because they don't know about them. So we're also saying to researchers: You cannot look at a person and assume, just because they're black or Hispanic, that they don't want to participate in your research study.

There's an argument that says, you can't force people to look after themselves and their loved ones. How can any reasonably responsible citizen today — even if they're poor, even if they're illiterate — not know that it's dangerous to smoke cigarettes, to drink alcohol excessively, to share hypodermic needles, to have unprotected sex with people they don't know very well? Isn't public health a two-way street?

Yes, it is a two-way street. But you must look at the social context within which these diseases exist. For example, you mentioned cigarette smoking. It's true, no one puts a gun to your head and makes you light up. But at the same time, there have been inner-city minority communities that were literally inundated with billboard advertising for cigarettes. Pick up a black magazine like Essence or Ebony. Who's doing most of the advertising? Cigarette companies. Alcohol producers. You cannot separate personal behavior from the societal influences helping to shape that behavior.

We have effective interventions to help people to quit smoking. It's an addiction. Stop treating it as a moral failure. People should be able to be treated for addictions and not be denied treatment because they don't have insurance.

You also brought up the example of sharing hypodermic needles. The science is clear that programs that provide clean needles stop the spread of AIDS. Yet, it is against the law to use federal funds to support needle exchange programs. Some states have laws that say you cannot go into a drugstore and buy needles without a prescription. These are policy barriers that are preventing people from taking more responsible action.

Last but not least, it's not the individual's fault that there are waiting lists to get into treatment. These things must be addressed from a broader community and policy context. We need to move beyond victim-blaming and look at what we can do to change the system so people are encouraged to access care.

What are you hoping this week's summit will achieve?

One of the unique features of this summit is that is will include representation from the NIH, foundations, several state offices of minority health, and other academic centers for minority health like ours. And then you have the ethnic groups: African-Americans, Native Americans, whites, Hispanics, Asian Americans. We've never had all of the stakeholders in the same room at the same time. This summit requires the scientists to talk to the policy makers, and for both of them to talk to the community organizers.

Another factor is the national campaign launched last year to eliminate ethnic and racial disparities in health. This is a first. Before, the standard procedure was to set national health goals for America, and then we would set lower goals for minorities. When President Clinton announced the campaign to eliminate disparities, he said that we are now going to have one set of health goals for all Americans. The challenge is to close the gaps where they exist, and make sure that all Americans are benefiting from what modern medical science has to offer.

The national campaign has identified six priority areas: infant mortality, cardiovascular disease, cancer screening and management, diabetes, HIV-AIDS, and adult and child immunization. In addition, there are things like mental health disparities that need to be addressed.

Part of the context of this summit is that the U.S. Congress recently passed legislation establishing a new NIH Center for Minority Health and Health Disparity, with an initial budget of over $100 million. That's historic, and this meeting is coming right on the heels of the creation of that center. In fact, as part of the summit, on Jan. 11 there will be a community forum in the Hill House auditorium. At that forum, the NIH will publicly announce the creation of the new center.

I see a paradigm shift in this country regarding racial and ethnic health disparities. For example, the theme of this year's American Public Health Association meeting was eliminating health disparities. Later this year, the Society for General Internal Medicine will meet in San Diego, and its theme, too, will be eliminating disparities. It's more than window dressing or political rhetoric. I believe it's a true recognition that these disparities do not need to exist. It is within our power scientifically and politically to close the gap.

Will this "paradigm shift," as you call it, be affected by a Bush administration?

That's one of the issues we'll talk about at this summit. Does the campaign to eliminate health disparities belong to only one political party? I would suggest that the health of the American people cuts across politics. Are there different strategies or methods that might be used? Probably. But even the new administration is talking about how they trust people at the local level, and want to give more authority to state government. We just received a letter of endorsement to be read at the summit from Pennsylvania [Robert] Secretary of Health Zimmerman.

Part of the key for any policy initiative coming out of a bureaucracy like the federal government is that there have to be stakeholders, there have to be people in communities across the country willing and able to hold the bureaucrats accountable. At this summit, you're going to see the people who have committed themselves to doing that. They're coming from Boston, from San Francisco, Nebraska, Atlanta, all over. You're talking about people who have committed themselves to holding the new administration accountable for making sure that eliminating health disparities is not rhetoric but is real.

What tangible progress do you expect to see, say, in the next decade? Will more African-Americans be enrolled in Pitt research studies and hired as Pitt faculty members? Will infant mortality rates among blacks be lower?

I would say yes to all of those things. It's already happening. When I arrived in Pittsburgh last August, there were front page newspaper stories about the Healthy Start Initiative, focused on improving infant mortality rates, particularly among African-Americans in Allegheny County. It's been quite successful.

Let's talk about the recruitment of black faculty. This school was established in 1948, and I was the first African-American tenured professor in the history of this school. Now, this week's summit will bring a diverse constellation of minority folks to the University of Pittsburgh. You want to talk about, "We can't find qualified people"? They're going to be right here on campus. And this is just the beginning. We have a summit web site that will help to maintain the conversation and relationships that we'll build. Hopefully, minority and women faculty and potential faculty will come to this summit and realize, even in the winter: Hey, the University of Pittsburgh is an exciting place, where you can come and grow.

Last month, Dr. Arthur Levine [Pitt senior vice chancellor for Health Sciences] announced the recruitment of a new chairman of the Department of Family Medicine, and it happens to be a female African-American physician, Dr. Jeanette South-Paul. So there's another first. I think this change is directly related to the leadership here at the University. Dr. Levine has been here for two years, and he's a real supporter of what we're doing in the Center for Minority Health. Chancellor Nordenberg has just established the Chancellor's Advisory Group on Diversity, of which I'm a member. I would say to you that there is leadership at the top of this institution that suggests we're turning a corner here.

Here's another example of the progress that's being made: Our center has just entered into a partnership with the Epidemiology Data Center that's run by Dr. Katherine Detre, which is a premiere research engine here at the University. She and I have begun collaborating with the Gateway Medical Society, which is the organization of black physicians in Allegheny County. It's easy to forget that there was a time when blacks could not be members of the American Medical Association or its local counterpart, so black doctors had to form their own groups. At the national level, it's called the National Medical Association; locally, it's the Gateway Medical Society. This society previously had no formal relationship with the University of Pittsburgh. Through this new partnership, we will provide black physicians with access to the computer backbone of the University. They will be able to harvest the medical literature in our Health Sciences Library. In our visits to some of these [African-American] physicians, we found that they were just not plugged in. And it's one thing to be plugged in, and another to know how to find the information you need, so part of this project will involve continuing medical education training on how to utilize the Internet for health information.

The Jewish Healthcare Foundation recently released a report on computer use and technology in Allegheny County, and one of their findings was that computers were being underutilized in the black community. We see that digital divide as being serious, and our first effort to close the gap and build relationships with black physicians is through this Internet project. Once that bridge is put in place, we will be able to find out what their needs and concerns are, what their research issues are.  

Filed under: Feature,Volume 33 Issue 9

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