Tammie Denyse, a breast cancer survivor, entered a clinical trial years ago, partly to ensure more participation by black women. She is a part-time youth pastor at Cho Un Korean United Methodist Church in Orangevale.
Getting diagnosed with cancer was “horrific” enough. But discovering that very few African American women like herself were enrolled in clinical trials to find a cure? That was almost as distressing for Tammie Denyse, a longtime breast cancer survivor in Sacramento.
After her Sutter Health oncologist offered her a slot in a clinical trial to test a new breast cancer drug treatment, the youth pastor carefully checked the study’s protocols for potential side effects. Then promptly signed up.
The lack of participation amongst Latino's, African-American and others may be due to a lack of knowledge about what clinical trials are? Providers also may inadvertently or otherwise fail to educate their patients about clinical trials. The answer may be to educate providers to teach this group about trials. Public health announcement need to be targetted to those groups as well. Last month, the California Medical Association Foundation and its ethnic doctor groups launched a statewide campaign to encourage more participation by diverse patients. The campaign features posters in doctors’ offices and short videos for patients that discuss the value of clinical trials.
“We’re hoping to start conversations with their physicians,” said Dr. Margaret Juarez, an obstetrician-gynecologist in the San Gabriel Valley who chairs the Network of Ethnic Physician Organizations representing more than 25 ethnic doctor groups statewide.
“The most important thing about being in a clinical trial is that I was giving back,” said Denyse, 52, a part-time pastor at Cho Un Korean United Methodist Church in Orangevale. By participating in a clinical trial, she gained an “opportunity as an African American woman to impact medicine … to know that this horrific cancer journey I was on was not in vain.”
Denyse, however, is not the norm. According to federal data, participants in U.S. clinical trials have historically been overwhelmingly white and predominantly male.
In a 2011 report, the Food and Drug Administration noted that blacks were 12 percent of the population but only 5 percent of clinical trial participants; Hispanics, at 16 percent of the population, represented only 1 percent.
So what’s keeping people away? It’s a combination of misunderstanding, fear, lack of awareness and financial and cultural barriers, say medical experts.
“It can be harder to recruit minority populations, but it does not mean Latinos, African Americans and Asians aren’t willing. They may not know of these trials,” said Dr. Sergio Aguilar-Gaxiola, director of the UC Davis Center for Reducing Health Disparities.
There also may be unconscious bias by researchers who find it more problematic to enroll diverse patients, particularly those with limited English proficiency, he added.
“If you’re a patient and don’t know what ‘clinical trial’ means, you might be thinking: ‘Does my doctor want me to be a guinea pig or take me to court?’ ” said Chen. “For a person who doesn’t know medicine, the words create an ambiguous and negative connotation.”
Time and logistics also can be barriers, he noted. A clinical trial can require more doctor visits, meaning patients need to leave work or arrange child care to get to appointments. Patients may also need to take additional medications or tests.
ANYONE WISHING TO LEARN ABOUT CLINICAL TRIALS CAN FIND THEM HERE: Clinical Trials
California doctors try to bring more diversity to medical research | The Sacramento Bee
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