Breast cancer outcomes are worse for Black women and women of color. We take a look at the causes and potential solutions.
From maternal mortality to breast cancer survival to mental health treatment, healthcare outcomes for women of color in the U.S. can be challenging. Shondaland decided to take a deep dive to uncover the root causes of this urgent problem, and to shine a light on the solutions that can bring inequities to an end.
Getting a diagnosis of cancer of any type can be absolutely devastating. Breast cancer, in particular, is the most common form of cancer diagnosis that an American woman may face, outside of skin cancer, according to the American Cancer Society. In fact, according to breastcancer.org, nearly one in eight women will be diagnosed with breast cancer in their lifetime. Breast cancer affects more women globally than any other form of cancer, and it has the highest mortality rate for women between the ages of 20 and 59. Estimated deaths from breast cancer in 2020 in the U.S. ranged from 42,000 to 43,000.
Thankfully, the mortality rate for breast cancer has improved over the last few years due in large part to early detection and efforts by groups like the American Cancer Society and others to educate women and their loved ones about the risks of breast cancer and how to spot it before it becomes fatal.
The story isn’t all positive, however. An increasing body of published research has shown significant disparities in breast-cancer outcomes amongst Black women and women of color compared to white, non-Hispanic women. According to a study published in Advances in Experimental Medicine and Biology in 2020, “the incidence rate of breast cancer before age 45 is higher among Black women than white women, whereas between the ages of 60 and 84, breast-cancer incidence rates are strikingly higher in white women than in Black women. Yet, Black women are more likely to die from breast cancer at every age.
The CDC notes that while Black women are less likely to get breast cancer than white women, they are 40 percent more likely to die from it. Karen E. Knudsen, MBA, PhD, is the chief executive officer of the American Cancer Society (ACS) and its advocacy affiliate the American Cancer Society Cancer Action Network (ACS CAN). “The disparity is striking,” Knudsen told us via email, “and there is a concerted effort in the oncology research community toward understanding the underpinning reasons for this difference in outcome. The research that does exist points toward a multi-factorial set of root causes that include: access to care (including screening, advanced treatment options, and clinical trials), health-insurance availability, socioeconomic factors, and limited insight into potential genetic or other differences.”
Why researchers believe this disparity exists
To Knudsen’s point, several studies have shown that there are a variety of factors that contribute to the higher rate of death from breast cancer amongst Black women and women of color. Researchers postulate that these could include everything from biological factors like different subtypes of breast cancer that women of color are susceptible to (ER+ and HER2/neu-positive subtype, the ER+ and HER2/neu-negative subtype, and the basal-like breast cancer, also known as triple-negative tumors), hormone levels, growth factors, and chromosomal differences.
Yet researchers cite social and environmental factors as potential contributors as well. For example, the study linked above notes that Black women are more likely to have more children at a younger age and choose not to breastfeed, which researchers think could be linked to breast-cancer incidence. It also notes that possible risk factors include everything from socioeconomic status and exposure to carcinogens (smoking, through various beauty products that contain endocrine disruptors and other poisonous additives, and through the environment, etc.), as well as access to health insurance and structural racism within the medical environment. As Knudsen points out, there’s been a lack of study of breast cancer in women of color as well.
Women’s pain is often dismissed
Women’s pain is often dismissed by health professionals, particularly when it comes to menstrual or reproductive pain. As Jamille Fields Allsbrook, the director of the Women’s Initiative at the Center for American Progress, a progressive think tank based in Washington, D.C., says, “Women, in general, are likely to have any of their complaints about pain ignored. Black women are even more likely to have their pain ignored.”
An oft-cited study published in 2016 shows that medical students demonstrated racial bias in pain assessment and treatment because of false beliefs about biological differences between white people and people of color. While that study took place well before 2020’s collective racial awakening, many experts still say that racism in the U.S. health-care system presents significant barriers to getting women of color the help they need.
As Allsbrook says, “Providers and their staff, whether that’s the person in the room or the person at the front desk, need to be trained on anti-racism and recognizing implicit bias we all have.”RELATED STORY‘Unwell Women” Shines a Light on Medical Biases
“These reports are indeed deeply troubling and illustrate a significant source of cancer-outcome inequities,” Knudsen notes. “This is yet another reason why ACS is increasingly focused on funding research surrounding the basis of disparities in cancer outcomes. Raising awareness and leading change through evidence is a central component of the ACS mission. Having previously led one of the nation’s leading cancer centers, I can firmly attest that these studies are effecting positive change at the level of the medical system. However, the pace of progress is not fast enough. It remains critical for all women to advocate for care aligned to best practices. For visits wherein there is a concern, it’s a good idea to prepare questions ahead of time, communicate symptoms and concerns to completion, and give feedback to your care provider. You know yourself better than anyone else; if things just don’t seem ‘right’ or you aren’t comfortable with the interaction, seek a second opinion immediately.”
Racism and social context
Another 2016 study out of Harvard argues that to understand more about why women of color and Black women die from breast cancer more frequently than white women, medical practitioners need to also consider the social context of the lived experience of racism.
According to the study, early exposure to life stressors, which include things like malnutrition, childhood obesity, and exposure to alcohol, may increase the occurrence of breast cancer and other chronic illnesses. As the study notes, “This highlights the central role that racial differences in exposures over the life course in family, neighborhood, and occupational environments may play in racial disparities in health. The terms accelerated aging, premature age, and biological weathering are used in the literature to describe this phenomenon of an earlier onset and poorer prognosis for illness across multiple chronic diseases.”
Women of color are more likely to lack health insurance
A cancer diagnosis can turn your life upside down — and that’s well before you consider the potential costs of treatment. According to a March 2020 study, the average cost of breast-cancer treatment without insurance can run anywhere between $20,000 and $100,000. With insurance, between co-pays and deductibles, treatment can run as high as $10,000, or perhaps more, depending on your insurance provider, what type of cancer you are diagnosed with, your treatment plan, and where you live, according to WebMD.
According to the Center for American Progress and U.S. Census Bureau data from 2019, of the 38.1 million people living in poverty in 2018, 56 percent — or 21.4 million — were women. CAP also notes that because of the wage gap and gender and racial discrimination, women of color are more likely to live in poverty than other groups. The National Women’s Law Center estimates that approximately 18 percent of Black women live in poverty. Add to this the fact that, according to the Kaiser Family Foundation, more than 1 million women fall into what it calls the “Medicaid coverage gap,” which means they can neither afford to buy insurance through the Affordable Care Act nor do they qualify for Medicaid. That means that it’s less likely that a woman of color with a breast-cancer diagnosis will be able to afford treatment because of the lack of health insurance and the cost of treatment.
What you should know if you’ve been diagnosed with breast cancer
While it is scary to be diagnosed with any form of cancer, it’s essential to get treated as early as possible.
As Knudsen says, “For every woman, it is critical to have a conversation with your physician about breast-cancer risk and screening guidelines that are right for you. Women with a known genetic or family risk will have a different screening plan than an individual of average risk, and your physician can work with you to develop the most appropriate care plan. This is especially important for Black women, who are more often diagnosed with breast cancer at an early age. It is also important to understand that you are your best advocate! It is perfectly acceptable and important to raise questions with your family doctor about your relative risk, even if they do not ask. Once you have a plan, stay with it, and if you detect unusual changes in the breast, schedule an appointment to be seen. Early detection is key — once cancers have spread beyond the breast, it is more difficult to treat. Finally, it’s important to note that reducing cancer risk is something you can do every day — research has shown that maintaining a healthy diet, regular exercise, and limiting alcohol can reduce breast-cancer risk.”
Knudsen also notes that “A breast-cancer diagnosis is devastating, but there are a number of actions that can help women with their treatment journey. First, understanding what type of breast cancer is essential. Each type of breast cancer is treated differently, so asking about the precise ‘subtype’ is important. Secondly, ask whether tumor profiling will be performed and whether genetic testing is appropriate. There have been major strides toward personalized medicine and better matching patients to treatment based on tumor DNA profiling. Third, always consider a second opinion, including an evaluation of your case at a cancer center with a multidisciplinary clinic. In such a setting, all the breast-cancer experts (surgeons, pathologists, oncologists, etc.) evaluate the case as a team and use the latest evidence to develop a single, comprehensive care plan. Fourth, ask about clinical trials and whether they are right for you. Clinical trials are often the conduit to the most advanced care. Finally, bring in your caregiver. Having a second pair of ears to listen and help you navigate the treatment journey can make a positive difference in your time on treatment.”