Health Care

Breast cancer advocates are addressing racial disparities head-on

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When Kimberly Richardson was diagnosed with an aggressive form of breast cancer in 2017, her doctor recommended she enroll in a clinical trial for an experimental chemotherapy pill.

The study, like many others, needed more Black participants. Only 5 percent of participants in U.S. clinical trials are Black, a fact that experts attribute to a history of racism in medicine. That racism – including prominent examples like the Tuskegee study that saw U.S. government researchers deny syphilis treatment to Black men – has engendered mistrust in the Black community.

Richardson didn’t hesitate to say yes, though. Black women are 40 percent more likely to die from breast cancer than white women, despite the fact they are diagnosed at similar rates.

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She also believed her participation could help other Black women in the future.

“I know that a lot of African Americans turn up their noses to clinical trials,” said Richardson, who now raises awareness of breast cancer as a board member for the Houston nonprofit Angels Surviving Cancer. “But I looked at it different. When I go to speak and I give my story, I let other women know it’s worth a try.”

About one in eight women in the U.S. will be diagnosed with breast cancer, but there are significant racial disparities in outcomes. Those disparities are even greater in younger patients; Black women under age 50 are twice as likely to die of breast cancer as white women, according to the Breast Cancer Research Foundation.

Breast cancer survivors like Richardson are working to address those disparities head-on. She believes talking about those problems is an important part of the solution to overcome them, especially because it could help reduce barriers to breast cancer screenings that are key for early detection and, ultimately, successful treatment.

“People say that breast cancer has no color. It’s not true,” said Cynthia Johnson, a Houston resident who is an ambassador with the nonprofit For the Breast of Us. “The care given, the outcomes, they’re not equal. We have to be deliberate about creating messaging for these communities, because it’s not one-size-fits-all.”

Various factors contribute to those disparities. Black women tend to be diagnosed with breast cancer at a later stage, partly due to socioeconomic factors like inadequate health insurance and less access to care.

Genetics also play a role. Black women are more likely to be diagnosed with aggressive subtypes, such as triple-negative breast cancer. However, Black women are also 28 percent more likely to die of triple negative breast cancer than white women with the same diagnosis, according to a 2021 study in JAMA Oncology.

Being diagnosed with more aggressive forms of breast cancer at a later stage is a recipe for poorer outcomes, said Dr. Kelly Dempsey, a breast surgeon at Houston Methodist.

“When you put those two factors together, it is not a good mix,” Dempsey said.

Talking about disparities can be difficult, because they can reinforce the mistrust that is rooted in the history of racism in medicine, said Shahnjayla Connors, an assistant professor of health and behavioral sciences at the University of Houston-Downtown.

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However, that mistrust can have negative effects for women of color, Johnson said. They may be less likely to see a doctor if they know or feel they’re being treated differently, which could delay the detection of breast cancer. They may also be more reluctant to participate in clinical trials, or take medication that was approved after a clinical trial, she said.

Working to overcome those problems is part of the reason Johnson wanted to share her experiences after she was diagnosed with breast cancer in 2018. She realized no one in her circle was discussing breast cancer, despite its prevalence and the higher mortality rate for Black women.

Johnson, who is now 43 years old, shared messages, photos and videos on social media while she underwent surgery, chemotherapy and radiation treatments.

She also provided helpful information, such as the fact the American Cancer Society recommends women at an average risk for breast cancer begin annual mammograms at age 45 (though many experts recommend starting earlier). She heard from strangers who told her they went for their first mammogram because of her posts.

Richardson began getting mammograms at 18 years old because she had fibrocystic breasts, a common condition that can give them a lumpy or ropelike texture. But she stopped going for a few years while she was taking care of her elderly parents. She had a mammogram after feeling a lump in the fall of 2017, and a biopsy confirmed she had stage three breast cancer.

She joined the clinical trial for a drug called sapanisertib, which is still being evaluated, and the treatment reduced the size of her tumor by 85 percent. Over the next year she also had surgery, chemotherapy and radiation. She has now been cancer-free for four years, and has returned to teaching second grade at Houston’s Lockhart Elementary School.

Richardson, like Johnson, believes it’s important for women – and particularly women of color – to talk about breast cancer and its risks. She tells women not to let life get in the way of a mammogram, because catching breast cancer early is vital.

She also hopes to inspire more women of color to be part of clinical trials. Overcoming mistrust is key to developing more effective breast cancer treatments that can help save lives, Richardson said.

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“I am an example of a success story through a clinical trial that pretty much saved my life, I believe,” she said.

Raising awareness is just part of the solution, though. Experts say there are ways to improve disparities, such as increasing access to breast cancer screenings and investing in health equity research.

It’s also the responsibility of the health care community to reduce mistrust, Connors said. There are examples of gradual progress, such as medical schools focusing more on cultural competence education. But it’s also up to the doctors who interact with patients every day to make sure people of color do not feel they’re being treated differently, she said.

“If a woman of color goes to the doctor and she feels like she’s being treated differently because she’s Black … that trust is not going to be established,” Connors said.

Johnson believes advocates like herself are also an important part of the solution. She thinks many women are reluctant to discuss breast cancer because it’s a private and emotional topic, but she knows it’s important for everyone to understand the risks and the importance of early detection.

Furthermore, being open about racial disparities is the best way to overcome mistrust, she said. She sympathizes with women of color who may be reluctant to participate in clinical trials or undergo certain treatment. But she stressed the importance of efforts like #BlackDataMatters, an initiative of the Black Breast Cancer Alliance to encourage Black women to be involved in the research to develop more effective treatments.

“If we want to be seen and heard and we want to not die from breast cancer, we have to be part of the solution,” Johnson said.

evan.macdonald@chron.com

 

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