To understand how a small minority group responds to a drug, researchers might have to enroll more patients than what would be a nationally representative sample. In a trial of 100 people, two Native American or Alaska Native patients would reflect those groups’ proportion of the U.S. population but wouldn’t give doctors enough information about race-related impacts.
Linda Burhansstipanov, DrPH, founder of the Native American Cancer Research Corp., estimated that 85% of Native Americans want to participate in clinical trials when informed of the opportunity. She knows several Native American patients who drove 3 hours each way to participate in a trial, despite losing an entire day of work.
Still, trial protocols are rarely designed with minority communities in mind, Dr. Burhansstipanov said. It has long been rumored among Native Americans, she said, that a clinical trial in the 1990s required patients to take a medication upon rising in the morning. In many Native American tribes, the first thing people do when they wake up is greet the sun with morning prayers. For some tribes, prayers can take more than half an hour. Because of the delay, the tale goes, Native American patients were kicked out of the clinical trial for violating the protocol. “The story spread and became a barrier for people to take part in clinical trials,” she said.
In addition, the history of unscrupulous medical experimentation on minorities feeds wariness of clinical trials. Angela M. Marshall, MD, an internal medicine doctor and board member of Black Women’s Health Imperative, said she sees a “lack of excitement among minority communities for clinical trials, coming from a mistrust of the medical community.”
Her black patients often cite the infamous Tuskegee study, conducted from 1932 to 1972 by the U.S. Public Health Service, in which researchers knowingly withheld treatment from African American sharecroppers with syphilis in order to study the progression of the disease. Some Native Americans are similarly suspicious of the medical community, Dr. Burhansstipanov said, because the Indian Health Service (a unit of the U.S. Department of Health and Human Services) sterilized thousands of Native American women in the 1970s without their consent.
“The medical community has to engage in some serious trust-building initiatives,” Dr. Marshall said.
That trust is what has helped to keep Thomas Goode alive. An African American diagnosed with multiple myeloma in 2005 when he was 34 years old, Mr. Goode has endured three stem cell transplants. Between each transplant, he participated in clinical trials, where he gained access to drug cocktails that helped bridge him to the next procedure. He counted himself lucky that he lived close to Durham, North Carolina, which is a research hub, so he was able to see specialists and take part in trials.
“I never knew anything about clinical trials, but a lot of my trust and faith was in the doctor,” he said. “I said, ‘I trust you, doctor, whatever you say.’ ”
Now, Mr. Goode has gone 6 years without a relapse. “I’m in a good place right now,” he said, “But if I didn’t try a trial, who’s to say I would still be here?”
ProPublica is a Pulitzer Prize–winning investigative newsroom. Stat is a news organization reporting from the frontiers of health and medicine.