When recruiting patients for a clinical trial, it is important that researchers select the right mixture of people—in terms of age, gender and ethnicity—who they’re seeking to treat with a new therapy or treatment intervention. This variety is critical for researchers to understand how treatments impact patients differently. Unfortunately, achieving diversity in clinical trials continues to be a challenge.
While African Americans make up over 20 percent of newly diagnosed multiple myeloma cases in the United States, they represent only 8 percent of cancer clinical trial participants. When it comes to multiple myeloma, a cancer of a type of white blood cells called plasma cells, African Americans are twice as likely to be diagnosed with the disease, which makes it even more important that they are better represented in myeloma clinical trials.
Meanwhile, African Americans are more likely than any other racial group to be diagnosed with and die from cancer. African Americans have also benefited less from advances in myeloma treatment over the past two decades than whites, suggesting unequal access to or response to treatments.
“Without a doubt, African Americans are underrepresented in myeloma trials,” Brendan Weiss, an assistant professor of medicine at the University of Pennsylvania who specializes in myeloma, said. “Now that new tools like next-generation DNA sequencing can shed some light on the genetic diversity in myeloma, studies should absolutely do the best they can to try to get diverse representation.”
Understanding the genetic differences between African American patients and other patients with myeloma could go a long way in explaining the differences among different patient groups in how the disease progresses and responds to treatment. As a result, doctors may get more insight into how to treat the disease most effectively for each group.
But recruiting African Americans for trials has been difficult. In one 2013 survey, African Americans were more likely than any other racial group to cite lack of trust as a reason not to participate in a clinical trial and to believe that patients are sometimes enrolled in trials without their consent.
“African Americans have a historical mistrust of the medical system,” said Alfiee Breland-Noble, an associate professor of psychiatry at Georgetown University who studies disparities in clinical trials. “A lot of that mistrust comes from people feeling like they’re not treated equally in the health care system.”
To boost enrollment of African Americans in clinical trials, including those of myeloma therapies, clinicians have to build an environment of trust. Clinics must be proactive in communicating the value of clinical trials consistently—with pamphlets in the waiting room, for example, not just when recruiting patients—so people can begin to learn why participation is so vital to improving the understanding of disease and treatments for everyone.
The message we want clinicians to get across to African American patients is: you are needed, you are important, and we need to know how these medications impact people like you.
For instance, one study found that providing patient navigators to help guide patients and answer their questions about the process raised the enrollment rate of eligible African American cancer patients to about 80 percent. Another group found that African Americans who participated in a clinical trials education program through their local church were almost three times as likely to enroll in a clinical trials registry.
“The message we want clinicians to get across to patients is: you are needed, you are important, and we need to know how these medications impact people like you so that we can help other people like you,” said Breland-Noble.
Diversity among researchers, clinicians and clinic staff can also help patients of various backgrounds feel more comfortable throughout their care. It’s a sentiment that Celgene’s Standing in the Gaap initiative is already embracing, with efforts to boost the numbers of students pursuing cancer research and medicine at historically black colleges and universities.
By making the field of myeloma care and research more diverse, the campaign aims to make African American patients feel more included and more likely to participate in clinical trials. It’s only then that researchers can study the full links between genetics and myeloma.
Discover more information about how myeloma affects African Americans on the Standing in the Gaap Facebook page.