October 26, 2021 10:45 AM EDT

Most guidelines and data on breast cancer have come from studies of white women of European descent.

“I don’t experience the screening recommendations in the same way that white women do,” says Yvette Gullatt, chief diversity officer for the University of California system. “I experience breast cancer in Black women as highly aggressive and lethal. I’ve had white colleagues who were diagnosed with breast cancer and go to radiation in the morning, and are back at work by 10 a.m.; they never miss a day.”

Gullatt joined the WISDOM study, which stands for Women Informed to Screen Depending On Measures of risk, in the hopes that she can improve breast cancer care for Black women. “We need more studies like this because [researchers] need more data in order to diagnose and treat us better,” she says.

The WISDOM study was launched in 2016 by Dr. Laura Esserman with the hope of bringing a more personalized approach to figuring out each woman’s risk for the disease, plus tailor a screening and treatment program appropriate for that risk.

Esserman and her team are working closely with community advocates to increase awareness and education about clinical trials among Black women, who already have a deep mistrust of the medical system given notorious episodes of medical exploitation, including the Tuskeegee and Henrietta Lacks experiences. In those cases, Black patients were used in research studies without being fully informed of their participation or the potential risks of participating. Providing them with the opportunity to learn more about research trials is especially important, since about 25% of breast cancers among Black women are triple negative, a highly aggressive form that’s missing the locks to three hormone-based drug “keys” that have become effective weapons in fighting the disease in recent years. Without these locks, the drugs can’t work, and tumors grow more quickly and seed new growths in other parts of the body. Most of these cancers also start in younger Black women, under age 40, so they aren’t picked up because they aren’t getting mammograms yet, per current guidelines.

Rickie Fairley, a former marketing executive and breast cancer survivor, is working to improve education among Black women about the need to participate in trials like WISDOM. She has mobilized other women to serve as a clearinghouse for those who aren’t as familiar with the facts about breast cancer risk among Black women or about research and clinical trials. “Right now, we are not empowering Black women, or women of color, to understand the importance of research,” she says, noting that many Black women are afraid to join research studies. “There’s not enough data about Black women. We’re trying to figure out how to change the language so that we’re not afraid anymore, so that we take the fear away from any kind of research and empower us to participate in it.”

As part of WISDOM’s recruitment, Esserman has also reached out to the VA health system in the U.S. to include female veterans whose risk of breast cancer may be related to not just hereditary factors but environmental exposures during their service. Lisa Edwards, a veteran who was discharged from the Army in 1989, says the study is an opportunity to raise awareness and resources for women’s health in the VA system in general. “As female veterans, we faced chemicals and exposure just as the men did,” she says. “But because our bodies react differently, I think in the future it may help researchers understand certain cancers from chemicals that react differently in women than in men.”

Esserman hopes that having a more tailored approach to figuring out a woman’s risk based on her biological and social situation will mean that more women get the screening schedule and treatment for managing their breast health that’s right for them.

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