News > Patient advocates challenge oncology community to improve racial equity in clinical trials

Patient advocates challenge oncology community to improve racial equity in clinical trials

Disparities in diagnosis, treatment, and outcomes, and the need to build trust

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Health disparities in breast cancer care proved to be an important part of this year’s San Antonio Breast Cancer Symposium. One especially stimulating session was “Trust in Science” on December 7, which brought together a large, diverse group of advocates, doctors, and researchers concerned about racial equity in cancer treatment.

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An inspirational introduction by Maimah Karmo, founder and CEO of Tigerlily Foundation, was followed by keynote presentations by Dr. Lori L. Wilson, associate professor of surgery and chief of surgical oncology at Howard University Hospital, and Dr. Charles M. Perou, a genetics professor at UNC Chapel Hill.

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If you had one superpower you could use, one gift, to end barriers in health care, what would it be? What would it look like?”

Maimah Karmo

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Dr. Wilson, a surgical oncologist, shared insights not only as someone who treats and studies breast cancer, but also as someone who has been living with metastatic breast cancer for eight years. She asks why Black women, like herself, are overrepresented among people who have breast cancer yet underrepresented among those on clinical trials.

With that question in mind, Dr. Wilson led a study at Howard University to try to improve enrollment in clinical trials by looking at doctor-patient relationships. The small study found that patients respond better when an office visit begins with a conversational “life check.” Questions like “How are you doing?,” “What’s new?,” and “Have you seen your primary care doctor?” make patients more comfortable. This approach builds trust — trust that improves people's willingness to take doctors’ advice and consider clinical trials. Dr. Wilson hopes to expand her study in the future.

Dr. Perou reported on disparities in diagnosis, treatment, and outcomes from the long-term Carolina Breast Cancer Study. Black women have a 40 percent higher death rate from breast cancer compared to white women. This gap is even wider among women under 50. This is partly explained by cancer type. Black women are more likely to be diagnosed with triple negative breast cancers, many of which are aggressive. Yet, Black women who receive the same treatment for the same stage and type of cancer have similar outcomes.

Dr. Perou suggests the difference comes down to clinical trials. People in clinical trials usually get the best available treatment. Yet, many doctors do not discuss clinical trials with their patients or all patients. This may be due to biases or lack of awareness of clinical trials. Black people are more likely to be seen at community practices that do not offer clinical trials.

The Carolina study has also found differences in access to care beyond clinical trials. Among women with HR+ breast cancer, Black women were more likely to start endocrine therapy later. They were also less likely to take the medicines as prescribed for many reasons, including some that relate to distrust of their doctors and the medications. Black women were also less likely to receive the most effective treatment for HER2- breast cancer.

In a lively discussion, speakers and panelists brought up these other inequities:

  • Black people are less likely to receive the standard treatment for cancer of any type and stage. 
  • Black women are more likely to be told they have cancer over the phone compared to white people who are told in an office visit. Doctors are more likely to refer white women for biopsies within two days while taking a more wait-and-see approach with Black women.
  • Health care professionals hold biases about Black people’s pain tolerance that can interfere with patients getting treatment to manage pain.
  • Currently, fewer than three percent of all medical oncologists in the United States are Black.

They went on to suggest solutions, including:

  • Education to eliminate biases needs to begin in medical school.
  • Partnering with communities to expose younger people to careers in medicine, beyond being a doctor or nurse. Outreach gets medical schools into the community to work with young people, while “inreach” brings young people to the medical school for educational programs and activities.
  • Targeted mentoring to promote success among students and faculty from underrepresented groups.
  • Diversity, equity, and inclusion work involving all aspects of medical training, including curriculum.
  • Investing more in clinical trials to ensure diversity, including extra funding for targeted efforts to recruit more minority participants.

The panel sees hope in today’s medical students who, according to Dr. Melissa Davis of Weill Cornell Medicine, “do not shy away from difficult conversations.” They are more open to having deeper discussions about equity and social justice in health care.

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Living Beyond Breast Cancer is a national nonprofit organization that seeks to create a world that understands there is more than one way to have breast cancer. To fulfill its mission of providing trusted information and a community of support to those impacted by the disease, Living Beyond Breast Cancer offers on-demand emotional, practical, and evidence-based content. For over 30 years, the organization has remained committed to creating a culture of acceptance — where sharing the diversity of the lived experience of breast cancer fosters self-advocacy and hope. For more information, learn more about our programs and services.