For years, clinical trials were focused in academic medical centers such as the one below oncologist John DiPersio’s office at Siteman Cancer Center, high above the Washington University medical campus in the Central West End. Historically, most participants in clinical trials have been white men.
To help increase diversity in its cancer studies, Siteman bringing the science to people’s neighborhoods, with smaller centers in traditionally underserved areas, far away from the big medical campus. It most recently started clinical trials at its newest location in north St. Louis County, 12 miles north of the Central West End.
“Clinical trials are the only way we can advance not only our understanding of disease but treat patients better," said DiPersio, deputy director of the Siteman Cancer Center. "They’re absolutely life and death important to us and to our patients.”
Siteman has opened satellite locations in west and south parts of St Louis County, as well as in St. Peters, in St. Charles County. It’s also planning to open a location in Metro East soon.
As part of DiPersio’s job, he oversees the institution’s medical oncology trials — tests that show how safe and effective certain therapies are at treating cancer. Siteman doctors are working on more than 600 clinical trials and observational studies, he said.
“Cancer affects everyone, whether they’re poor, whether they’re rich, whether they’re black or white, whether they’re close or far away,” said DiPersio, who also is Wash U's oncology chief. “And the goal of this cancer center is to make everything available for everybody that would be available to the richest Caucasian person that lives in Ladue.”
Ideally, getting to the main medical campus wouldn’t be an issue, DiPersio said. But it’s not always possible.
“What we’ve done is the next best thing, and we’ve spread out to satellites,” he said.
As part of the Food and Drug Administration’s approval process, drugs must go through rounds of clinical trials. Patients volunteer to use their bodies as a testing ground. If they don’t end up helping themselves, they could indirectly help patients years or even decades in the future.
Trials help patients, too. Not only are they exposed to new treatments, they see their doctors frequently. There’s a whole team monitoring how they’re doing.
While the gap is closing, fewer than 10 percent of cancer clinical trial participants are African-American. That’s despite the fact the disease disproportionately affects people of color, who have the highest death rate and shortest survival for most cancers.
Radiation oncologist Lannis Hall, who works at the St. Charles Siteman satellite, thinks about the research gap all the time.
“If we are going to reduce disparities, the only way we’re going to find the solutions is through clinical studies,” said Hall, clinical outreach coordinator for the Program to Eliminate Cancer Disparities at Wash U.
The lack of diversity among clinical trial patients is bad for public health, Hall said.
“If you don’t participate in clinical studies, it may be that an outcome will be applied generally to the population that may not be right for you,” she said.
"If are going to reduce disparities, the only way we're going to find the solutions is through clinical studies."
For example, most organizations advocate mammograms after women turn 45 or 50, but those recommendations were based on studies with limited diversity. But 30 percent of black women discover breast cancer before their 50th birthday. Those screening guidelines can put them at risk, Hall said.
Among other issues, it’s a problem of access: Some members of minority groups are less likely to live in areas where it’s easy to travel to a big medical institution, experts say. They also are less likely to have the income and transportation available to travel to a place like Siteman’s main campus. By bringing science to people, one of the many barriers to participation is removed. In a still-segregated city such as St. Louis, that matters.
“A significant portion of our community of color resides in north St. Louis, in north county, and therefore Siteman in north county may be easier for people to get to. In fact we know that is that case,” Hall said.
Placing cancer centers in less affluent or less white areas can help diversify clinical trials, said Dina Lansey, assistant director for diversity and inclusion in clinical research at Johns Hopkins Kimmel Cancer Center in Baltimore. She studies barriers to participation, notably, when in the decision-making process patients opt out of participating in a study.
She said lack of education plays a role, as do worries and misunderstandings about how the studies themselves. For example, many people don't understand most clinical trials don’t involve placebos, so people aren’t being left untreated.
“Barriers to participation don’t exist in isolation,” Lansey said. “If you place a trial in a satellite location but haven’t addressed some of the other barriers, it’s actually not likely to improve the diversity of participants.”
Location is only one piece of a very complicated puzzle, Lansey said. African-Americans in particular have an ugly, troubled history with medical research. Both Lansey and Hall noted the Tuskegee syphilis experiment, in which the U.S. Public Health Service secretly left hundreds of poor African-American men in Alabama untreated to study the effects of the disease. The experiment, which went on for decades until 1972, is still in recent memory.
The same trust issues are inherent in the story of cancer patient Henrietta Lacks, whose remarkable cells were taken to be researched without her consent. Researchers and medical institutions have made billions of dollars using her immortal, rapidly dividing cell line.
"Barriers to participation don't exist in isolation."
Rebuilding trust among African-Americans will take a long time, and it will take more effort than just dropping a cancer center into a majority-black neighborhood, Lansey said. Hospitals need to integrate themselves into the community, and location means more than decreasing the time it takes to ride a bus to the front door, she said.
When a cancer center is in the community, “it’s a little bit more accessible to folks,” Lansey said. “Having it located in my immediate neighborhood says many things. It’s a different level of comfort. There’s an established level of trust with the physicians and clinicians at that local hospital.”
That level of familiarity is what brought breast cancer patient Judy Hall to Siteman’s north St. Louis satellite. Breast cancer isn’t new to Hall’s family. Her daughter was diagnosed, too, and received treatment at the clinic. Her daughter recommended her doctor to Hall.
Hall left her home in south St. Louis to stay with her daughter and grandchildren in north St. Louis while she received treatment. That’s where she decided to participate in a trial for an experimental drug to shrink her tumor.
“I said it would be a good idea, to help other women that’s going through it,” Hall said. “Maybe it’s something small that I could be able to help them understand it better.”
Both Hall and her daughter had been diagnosed with breast cancer. Given their family history, Hall worried that her granddaughter could be at risk.
Hall took an experimental drug and visited her doctor every week. During the whole trial, she stayed at her daughter’s house, three blocks away from the cancer clinic at 11133 Dunn Road in north St. Louis County.
"Maybe it's something small that I could be able to help them understand it better."
Judy Hall liked seeing her doctors every week. Unlike other cancer patients she met who had appointments every few weeks, she felt involved and educated about her own treatment. Her nurse, Ashley Murray, was a cell phone call away whenever she was unsure about a part of her trial. Hall said Murray kept her afloat in her most scary moments.
“It’s always important to have somebody who knows more than you,” Hall said. “I involved my family when I was coming for treatment, but I also told them, ‘Oh no, you guys don’t have to come to every treatment, I’m fine, because of course, Ashley was somewhere in the mix.”
Bit by bit, the north St. Louis clinic was providing the education and trust Lansey considers so important.
Hall will know more about whether she needs major surgery soon. She’s able to focus on her family – and herself. And being close to treatment means she’s received lots of support from her family, especially her grandchildren.
“They were spoiling me,” Hall said. “Everything that I thought might was wrong with me, they’d say, ‘You OK, Granny? Do you need this, do you need that?’ Being around family is a good thing.”
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