Maimah Karmo will never forget how she stuck out at the San Antonio Breast Cancer Symposium. The year was 2019. As the founder of Tigerlily Foundation, Karmo and a crew of patient panelists had been invited to host a chat aimed at fostering dialogue on breast cancer disparities facing young women in the Black community. To many of the scientists and clinicians in attendance at the prestigious oncology gathering, this perspective seemed novel. Recalls Karmo, “People were shocked that there were so many Black women in the room.”
Karmo, now 48 and a 15-year breast cancer survivor based in New York City, says the only real shock is how long it took Black survivors like her to get a seat at the table. “We should never be relegated to a side room,” she says.
In the global push to eradicate breast cancer, addressing disparities faced by Black women is critical. While breast cancer incidence in the U.S. is statistically similar between Black and white populations, Black women face a far higher likelihood of losing their lives to the disease, with mortality rates 39% to 42% higher than that of white women. One factor is that Black women are more likely to develop the triple-negative form of breast cancer, an aggressive subtype. Research has also shown that Black women who develop breast cancer before age 45 are more likely to be diagnosed with invasive forms at more advanced stages than white women in the same age bracket—to the tune of 55% vs. 46%. Advocates point to multiple domains in need of improvement, including public awareness, access to high-quality care, and research funding specific to Black women.
If all this feels like a lot, know that even cancer specialists themselves can be thrown by a diagnosis. Lori Wilson, MD, chief of oncological surgery at Howard University Hospital in Washington, D.C., was a busy new mom when she learned she had the disease in 2013. “I had just gotten married after holding off on marriage for my career. We were settling down and had a 1½-year-old,” she recalls. “And bam: It hit us. It has shaped every aspect of who I am.”
The barriers Black women face
Despite ongoing advances in breast cancer screening and treatment, studies have shown that Black women are less likely to receive adequate breast cancer care than white women are. Black women commonly experience longer intervals between screenings, lack of timely follow-up in response to iffy results, and delays in treatment after diagnosis, all of which suppress survival rates, according to a 2017 report from the American Cancer Society.
Karmo’s personal experience tracks with those findings—and given that Karmo was diagnosed in the early 2000s, illustrates how deeply entrenched the racial disparities are. At first, her doctor dismissed the lump in her breast as nothing to worry about. The physician only agreed to biopsy the mass after Karmo spent six months “harassing her by telephone,” Karmo remembers today. When the lump turned out to be a triple-negative malignancy, Karmo fired the physician, gathered up her medical records, and found a more qualified provider—an example of how self-advocating may make a positive difference in care.
It should be noted, however, that women of color disproportionately do not have health insurance coverage, which tends to limit access to breast cancer screenings. Komen.org offers potentially helpful resources for finding low- or no-cost screenings nationwide. And if you need assistance or support after a breast cancer diagnosis, this list of organizations compiled by the advocacy group CancerCare might be a useful starting point.
The COVID-19 pandemic, with its outsize impacts on communities of color, has made it challenging for many Black women to seek preventive care. This can allow breast cancer to progress off the radar, says Dr. Wilson, whose patients are predominantly non-white. Speaking to WW in October 2021, she adds, “I’ve probably seen more locally advanced breast cancers in these last three months than I had during all of last year.”
The fact that Black women may face additional health risks from co-occurring conditions, such as hypertension, that sometimes are worsened by disparities in the health care system itself underscores the importance of prioritizing personal health to whatever extent possible. Says Dr. Wilson, “We need to get back to our routine—seeing the eye doctor, gynecologist, going to the dentist, having our colonoscopy—and to double-down on emphasizing how much timing matters when it comes to breast cancer.”
Why we need more inclusive research
Even if you overlook the social factors influencing breast cancer outcomes among Black patients, Dr. Wilson notes that Black populations are underrepresented in clinical trials, and there remains a relative lack of research dollars specifically focused on understanding the health of Black communities.
Here’s just one recent example of why more research is needed: In a 2021 retrospective study that analyzed data on more than 23,000 Black and white patients who had been diagnosed with triple-negative breast cancer, Black patients had a higher likelihood of mortality even when they received the same kind of chemotherapy and surgery as white patients did—and even when household income, access to care, and living standards were similar.
“We’re trying to do a better job of highlighting the issues. We are trying to bring more of this out of the shadows.”
—Breast cancer surgeon Regina Hampton, MD
At this point, study co-author Ying Liu, MD, PhD, an assistant professor of surgery at Washington University School of Medicine in St. Louis, Missouri, can only make an informed guess as to why. “We found this racial disparity in patients getting chemotherapy but not in patients who didn’t get chemotherapy,” Dr. Liu explains. “One possible explanation is that [Black] patients may develop chemotherapy resistance.” Without additional funding and a follow-up investigation, however, the theory remains speculative.
A shortage of Black scientists and doctors exacerbates differences in health outcomes, Dr. Wilson says, echoing research published during the pandemic.
“I never want to impugn an entire group, and I know of white physicians who absolutely do a great job when it comes to issues of cultural competence and treating patients of a different race,” Dr. Wilson says. “But we still see such differences in outcomes. We still hear from our patient populations that they sometimes feel unheard, which may lead to mistrust. ... We must listen. Every story is different, and those stories must be incorporated into our care.”
The crucial role of Black community
While the wider medical establishment gets up to speed, Black women can benefit from being in conversation with each other about breast cancer risks and experiences, says Regina Hampton, MD, a breast cancer surgeon at Doctors Community Hospital in Prince George’s County, Maryland. “Many of us are discussing it more often,” Dr. Hampton tells WW shortly before a scheduled surgery on a 37-year-old Black patient. “We’re trying to do a better job of highlighting the issues. We are trying to bring more of this out of the shadows.”
Ragina Ireland, a 62-year-old breast cancer survivor and advocate based in Grand Prairie, Texas, does just that with Making Chemo Bearable, a nonprofit she founded to provide community and advocacy for patients and survivors.
Diagnosed in 2009, Ireland underwent a double mastectomy, a breast reconstruction, and chemotherapy in the span of just a few months. The physical impacts of pain, lethargy, and nausea were eased by community support, she says: Folks who held her hand during chemo. Boy cousins and sistafriends’ husbands who chauffeured her to treatments, then got her a meal if she felt up to eating.
Today, with a local network of volunteers, Making Chemo Bearable provides similar community support and promotes healthy behaviors like getting regular exercise; enjoying a diet rich in fruits, veggies, and whole grains; and practicing self-compassion. For people in the throes of chemo, Ireland’s group shares insider coping tips—like sucking on hard candy to quell nausea, and eating with plastic utensils to avoid the hyper-metallic taste that silverware can take on.
They also encourage participants to do what makes them feel good—and feel informed. A fall 2021 Zoom dance party is being planned with both those goals in mind. “We’re going to have a good time, absolutely,” Ireland says. “[It’s also] about making our community much more aware. Check your breasts. Make sure you get your mammogram. Do genetic testing, if you’ve got a family history with this disease.”
“It has made me more compassionate,” Ireland says of her cancer experience. “My heart is for women who are on this journey, and making it as comfortable and less scary and joyful as it can possibly be.”
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Award-winning journalist Katti Gray covers health and criminal justice for a range of national publications. She is the mental health topic leader for the Association of Health Care Journalists.
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This article was reviewed for accuracy in October 2021 by Stephanie L. Fitzpatrick, PhD, senior manager of WW’s multicultural program. The WW Science Team is a dedicated group of experts who ensure all our solutions are rooted in the best possible research.
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