As breast cancer deaths decline in America, racial disparities persist in the mortality rates between Black and white women.
Those rates remain 40 percent higher for Black women, who are also more likely than white women to be diagnosed with breast cancer under the age of 50 and to get the rare and aggressive triple-negative subtype of the disease.
Black women’s diagnoses are also usually more severe than white women’s, even at younger ages, added Lisa R. Hayes, executive director of Pink-4-Ever Ending Disparities, an organization dedicated to reducing the disparities in breast cancer.
“When Black women are diagnosed, it tends to be at a later stage of the disease. White women are diagnosed with stage 1 and 2 and Black women more often at stage 3 or stage 4, which is metastatic,” Hayes said.
The reasons for the disparities are complicated, involving everything from these late diagnoses to doctors dismissing patient symptoms to a lack of representation in cancer cure research.
As such, the ways to close the gap will need to be similarly multi-pronged, experts stress.
‘Something that we can change’
The disparities in breast cancer mortality rates are not unique; similar ones persist in all different kinds of cancer diagnoses.
But research has shown they didn’t always exist in breast cancer.
Dr. Julie R. Palmer, co-director of Boston University’s Cancer Center at the Boston Medical Center, has been studying breast cancer and the disparities for more than 20 years with the Black Women’s Health Study.
“Starting in the ’70s, there was not this disparity in deaths from breast cancer,” Palmer told The Hill.
When mortality rates first began decreasing decades ago, they did so for both Black and white women. This was largely due to significant improvements in treatment, particularly for estrogen-receptor negative breast cancer — the most common type, Palmer explained. Only over the last 15 to 20 years has the divergence in mortality begun to appear, and it remains unclear if this is due to one specific reason or a combination of factors.
One significant point in trying to understand what’s causing the disparities, Palmer suggests, is that they do not exist across the country.
While states such as Rhode Island have the highest incident rates of breast cancer, it’s southern states such as Mississippi where Black women have higher mortality rates.
“In some states, Black women are almost twice as likely to die from breast cancer as white women,” she said. “So what does that tell us? That tells us it’s not biology; it’s not genetics. It’s something else — it’s something that we can change, because otherwise it wouldn’t be different from state to state.”
Diagnoses come late
Among the factors contributing to Black women’s higher mortality rates is the fact, as Hayes notes, that they are typically diagnosed at later stages.
Breast cancer is the most commonly diagnosed cancer worldwide: Roughly 2.3 million people are diagnosed with the disease each year. Medical advances such as mammograms have allowed for early detection and a decrease in the number of deaths from the illness. Overall, mortality rates in the U.S. have fallen by more than 40 percent since 1989, according to the American Cancer Society, even as the number of cases has climbed. More than 90 percent of patients now survive at least five years after their diagnosis.
The chances of survival decline at later stages, however, and metastatic cases, in which the disease has spread beyond the breasts and surrounding lymph nodes, are still considered incurable.
The reasons why Black women are more likely to receive these more advanced diagnoses could be multi-pronged.
Guidelines on breast exams, from mammograms and screenings to doctor- and self-exams, differ across medical organizations — with some saying checkups should start only once a woman hits 50, despite 23 percent of Black women being diagnosed younger.
And providers don’t always respond properly to women who have done a self-exam, according to Hayes.
“When younger Black women present a breast problem to health providers, sometimes they’re blown off,” Hayes said. “Health providers even think like OK, no, you’re too young to have breast cancer, this is nothing. But that’s not the response that we think is appropriate, given this statistic that Black women are diagnosed at younger ages.”
Clinical trials leave Black women out
Clinical trials might be able to provide important information about what’s behind Black patients’ higher mortality rates and how best to treat them — but Black women have been excluded from such trials.
Studies have found that 40 percent of Black women diagnosed with metastatic breast cancer were never given information about an appropriate clinical trial, compared to 33 percent of white patients.
And research from the Black Experience of Clinical Trials and Opportunities for Meaningful Engagement project found that though 15 percent of cancer patients in the U.S. are Black, no more than 6 percent of clinical trial participants are.
This presents an obstacle for Black patients’ treatment as the medical field moves more toward personalized treatment plans and genomic testing to determine what treatments and drugs to employ for each specific type of tumor makeup. Hayes said clinical trials are vital to creating targeted treatment plans — and Black women’s exclusion makes that tailoring difficult.
“Black people are not representing these clinical trials in significant numbers, and what’s happening is that treatments and drugs are being developed based upon a body makeup that’s not necessarily reflected the Black ethnicity,” Hayes said.
This was seen most clearly when some chemotherapy drugs that caused neuropathy affected Black women more often and more severely than white women, Hayes explained.
Palmer added that many clinical trials also did not take place near predominantly Black communities.
“[Researchers] figured they could extrapolate from white women to all other groups,” she said.
But there have been some changes, Palmer said, with physicians educating themselves more and a renewed push by some clinicians to expand the diversity in trials.
There have also been efforts to create culturally competent care, she added, and to share new research with patients.
Bridging the gap will take ‘collective effort’
Both doctors and health agencies are working to combat racial disparities. The National Institutes of Health, for instance, have started funding more research and programs dedicated to helping minority populations. And among other actions, Hayes noted physicians and the Centers for Disease Control and Prevention have started urging patients to breastfeed.
Research has found breastfeeding to be particularly beneficial in preventing triple-negative breast cancer.
But breastfeeding rates are lower in the U.S. than in other countries, and Black women are less likely to breastfeed overall and more likely to do so for a shorter period of time than white women.
“Black mothers are not getting the advantage of breastfeeding that can help with whatever those biological changes are that the breast goes through after nine months of surges of different hormones, and then the changes that happened in the breast to prepare for breastfeeding,” Palmer said.
Hayes said the work to end disparities will take effort from everyone, including patients.
For clinical trials, she said, recruitment materials need to connect with Black patients, which can be as simple as having Black people on the front of brochures or posters.
But building trust will be a major hurdle, she said.
“One of the big elephants in the room is just distrust and fear of the medical system that is not just for clinical trials, but for across many facets of the health environment due to the historical treatment of Black people as it relates to research and access to health care,” Hayes said. “That’s a challenge that has to be overcome by the system.”
“There’s not going to be one organization, there’s not going to be one entity within the medical field that can solve these disparities,” she added. “It’s really going to take a collective effort by many stakeholders.”
Lydia McFarlane contributed.
