Many minorities still don’t participate in clinical trials, but changing the narrative can save lives
Researchers and patients can join forces to change the perception and the numbers
ESPN’s 2017 V Week runs through Dec. 8. During the fundraiser for cancer research, The Undefeated is telling stories about early detection, clinical trial studies and research in minority communities. ESPN hopes to raise funds and awareness about the important cause championed by our friend, coach Jim Valvano. One hundred percent of all cash donations go directly to cancer research. Donate here today.
Fact: According to the U.S. Food and Drug Administration, African-Americans make up about 5 percent of clinical trial participants and Latino Americans constitute 1 percent. As a result, treatments become biased toward whites’ reaction to drugs.
African-Americans are diagnosed with more advanced cancer, and death rates are higher. One way to help combat the issue is to have more people of color participate in clinical trials. But overcoming historical stigma is a big deal for minority populations and is likely one of the most common factors driving the low participation numbers.
For the black community, the clinical trials are reminders of the often negative intersection of ethics, race and medicine that has led to distrust. It is rooted in a history of exploitation of, and experimentation on, African-Americans that ranges from the Tuskegee Syphilis Study to a 19th-century doctor experimenting with gynecological treatments on enslaved women without anesthetics.
No one wants to feel like a big experiment, especially when they’re already sick and trying to fight a disease such as cancer, even if the medical research can lead to better outcomes.
Now more than ever, with the high death rates among black men and women, it’s time to change the narrative. Here are some ways to get the ball rolling:
First, clinicians can go into minority communities and contact community leaders, especially those who may have knowledge of clinical trials. They do exist. Many are even cancer survivors. They can also partner with churches and other agencies in the community, whose opinions are valued.
Next, clinicians can work on a plan to help minority communities gain trust in the health care system. Meanwhile, patients can search for a physician who can be trusted, one who is willing to explain the health care system to them. Another way is to garner the expertise of a health coach, an occupation that’s on the rise in many communities. Health coaches are trained to act as hands-on liaisons between patients and their plan of care. They are found to be more engaged with patients and can often build the trust and compassion between patients and doctors.
Finally, clinicians can lean on public relations professionals to increase communications between them and the community. Clinical trial enrollment barriers include the lack of proper access to health information services, socioeconomic patterns, social perceptions, time spent on travel to office visits and clinics, health literacy and drug side effects (there are many clinical trials that do not involve drug treatments at all). Clinicians and researchers could use help from trained professionals with disseminating studies into cancer communities, especially in communities of color. Cancer research terminology is often not translated for the lay public’s consumption, which is an immediate turnoff for even the most educated. Communication efforts to the public seem distant. Many patients have even expressed that researchers and clinicians should consider eliminating the term “clinical trials” altogether and use wording that is more patient-friendly and not pegged to a history of traumatic events.
In a 2014 article, Janet Stemwedel, associate professor of philosophy at San Jose State University, who studies ethics and scientific processes, was asked what steps have been taken by clinicians to dispel concerns of minority populations and she replied, “I can’t think of any positive trust-earning step that was taken, off the top of my head.”
Despite the low efforts, or those that haven’t properly traveled from the peer base to the community base, dollars from places such as the Stuart Scott Memorial Cancer Research Fund, formed by The V Foundation and family members representing Stuart Scott, have pitched in to help. This fund is dedicated to help minority researchers fight cancer in minority communities. It continues to advance Scott’s fight against cancer and assist some of the most vulnerable and disproportionately affected communities battling the disease.
Scott himself participated in a clinical trial study. He believed attitudes, beliefs and perceptions can change the thought pattern.
“Our father got seven years after he was diagnosed with cancer, and that is seven years we may not have had,” his oldest daughter, Taelor Scott, told The Undefeated.
Dr. Edward Kim, a lung cancer expert clinician, chairman of Solid Tumor Oncology and Investigational Therapeutics at Levine Cancer Institute in Charlotte, North Carolina, and a recipient of the Stuart Scott Memorial Cancer Research Fund, conducts a clinical trial on blood markers dealing with lung cancer.
“I think it’s still something that health care professionals, different support groups and education need to occur so that folks can understand what the opportunities are, and what’s the benefit for them,” he said. “I’m not saying that everybody should be on clinical trials, and every clinical trial can be a little different, but it is a way where we make progress. We can’t get a new drug unless we have a clinical trial. That’s what leads us to the next study, and the next study. I’m a strong advocate for people to be on clinical trials. I feel like we need more clinical trials out there. You find the right biomarker and identify the patient that’s going to benefit, that drug works really well.”
There are organizations that host clinical trial outreach campaigns and programs such as the federal Department of Health and Human Services’ Office of Minority Health, which can be a great resource for patients.