The failure in recruiting people of color for clinical trials is part of a broader failure in providing black women access to information about and services for diagnosing and treating breast cancer.
As another Breast Cancer Awareness Month comes to an end, a troubling inequity must remain front and center: Black women are being left behind by our efforts to end the suffering caused by this disease.
Although a recent American Cancer Society study reports that more than 300,000 breast-cancer deaths were averted over the last three decades, it also notes that black women were 39 percent more likely to die from breast cancer than white women. That’s more than double the 17 percent gap that existed 25 years ago, according to a study in Cancer Epidemiology.
This disparity can be narrowed with two steps: Boost research on the types of breast cancer that are more prevalent among black women, and improve outreach efforts to inform them.
Some scientists will rightly point out that this inequity arises, at least in part, from basic biology. Certain types of breast cancer have more effective treatment options than others. We have vastly improved survival for cancers fed by the hormones estrogen and progesterone, or a protein known as HER2, because we now have drugs that block them from fueling the cancer. Unfortunately, we have made less progress in more aggressive types of breast cancer that are not driven by these pathways. Among them are the “triple negative” cancers that account for roughly 15-20 percent of breast cancer diagnoses and have twice the incidence in black women.
Finding effective treatments for triple negative breast cancers is a tough challenge, but momentum is building as our understanding of them grows. The recent discovery that there are at least six different subtypes of triple negative breast cancer, with varying responses to treatment, was a turning point. We now understand that we can’t approach triple negative breast cancers as one disease. Researchers are investigating a variety of potential treatments that could impede the growth of these different types of cancerous cells.
But the causes of this inequity extend beyond biology. Our ability to find new treatments and diagnostics depends on clinical trials. While African Americans make up about 13 percent of the U.S. population, a study published last year in Cancer Control reports that they comprised only about 6 percent of participants in clinical trials for cancer treatments from 2000-2010, a disturbing drop from the previous decade. This means we are getting less information about breast cancers that are more prevalent in black women.
We can start to remedy this imbalance in clinical trials by using more flexible eligibility requirements so that black women are not screened out because of certain health conditions. Trials should include sites in neighborhoods and regions overlooked in the past, and they should cover routine costs for participants, such as transportation fees, to make it easier for low-income women, regardless of race, to enroll.
Perhaps most important, we need to overcome the mistrust of clinical trials rooted in the exploitation of black Americans in the Tuskegee Syphilis Study. We need to provide reliable information about the personal and social benefits of clinical trials.
The failure in recruiting people of color for clinical trials is part of a broader failure in providing black women access to information about and services for diagnosing and treating breast cancer. As Congress grapples with how our health-care system should pay for services, we can make progress in the meantime by marshaling more effectively existing resources.
We at Fred Hutchinson Cancer Research Center have had some successes working with diverse populations, notably “train-the-trainer” programs for members of Seattle’s black community in Seattle; the hosting of “home health parties” for the Latina community in the Yakima Valley; and more educational materials featuring women who actually look like those we serve. One example, a video of a black woman receiving a mammogram, was shown to increase mammography screening among black women in a public-health hospital.
In July, four leading cancer-research organizations issued a report calling for cancer health inequities research to be a priority.
We need to build on that call to action. No amount of money is going to end health inequities if medical researchers and providers are not connected to communities that have not shared fully in advances that are saving the lives of women with breast cancer.