The US Preventive Services Task Force (USPSTF) recently released its long-anticipated guidelines on breast cancer screening, lowering the screening age from 50 years to 40 years biennially. However, there has been growing concern over the adequacy of breast cancer screening guidelines for Black women. Despite advances in medical knowledge and technology, these guidelines often fall short of addressing the unique needs and risks faced by Black women when it comes to breast cancer. In fact, although they are a step forward, these recommendations still fail Black women who are more likely to get breast cancer before 40 and have a 41 percent higher mortality rate from breast cancer than white women.
BlackDoctor.org spoke with Linda Goler Blount, president of the Black Women’s Health Imperative and steering committee member for the White House Initiative on Women’s Health Research. As an epidemiologist, Blount shed light on why existing guidelines may not be sufficient and what steps can be taken to improve breast cancer screening outcomes for Black women.
The Problem with Current Guidelines
USPSTF made recommendations in 2009 and 2015 to raise the age of screening mammography from 40 to 50 years. This decision was based on the belief that the harms of false positives and unnecessary treatments outweighed the benefits of early detection.
However, these guidelines fail to consider several key factors that are particularly relevant to Black women.
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"Back in 2016, when we were trying to get the PALS Act passed, which would put a moratorium on raising the age of screening guidelines, we showed that if you raise the age, then another 1300 Black women are going to die every year. This is because Black women get breast cancer on average five to seven years younger than white women,” Blount shares.
Moreover, the research on which these guidelines are based often does not include a diverse representation of Black women.
“Researchers on the task force said that their recommendations are based on science, which is absolutely true. However, these studies were conducted in Sweden, China, and Canada, and did not include any Black women. So, our position was, how can you raise the age to start looking for breast cancer when we know Black women are getting it younger? We also know that half of women, including Black women, have dense breast tissue, which can make it harder to detect cancer. Black women are also twice as likely to get triple-negative breast cancer compared to white women. If we wait to start looking for breast cancer, those with triple-negative breast cancer will be in serious trouble, especially considering the challenges of late diagnosis,” Blount adds.
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The Impact of Incomplete Information
The lack of research specific to Black women's experiences with breast cancer has significant implications.
"One important point I want to emphasize is that being Black does not inherently cause Black women to have higher mortality rates. Black women and white women with breast cancer receive the same treatment and should have the same outcomes. However, the 40 percent mortality rate among Black women is due to a lack of standard care….Lack of research conducted on breast cancer in Black women…hinders our understanding of why Black women develop breast cancer at younger ages,” Blount notes.
In turn, Blount says Black women may not receive the appropriate screenings or may not receive them at the right time, leading to delayed diagnoses and poorer outcomes.
“We need to conduct studies on Black women to understand why they develop breast cancer and why they are twice as likely to get triple-negative breast cancer. Is it due to African origin, and if so, which region? We are currently making decisions based on incomplete information,” Blount shares.
Unfortunately, many Black women do not have access to life-saving clinical trials.
“The main reason Black women do not participate is not medical mistrust but rather that they are not asked. Providers and researchers make assumptions about their willingness to participate, leading to their exclusion,” Blount says.
“We conducted a survey of Black women in clinical research and found that over 60 percent dropped out, citing disrespect and feeling undervalued. It is essential to invite Black women to participate in research and to treat them with respect and value, as they are contributing significantly to advancing science, which unfortunately is often not the case."
Addressing the Disparities
To address these disparities, the Black Women's Health Imperative has launched the first-ever longitudinal study on the experiences of Black and brown women with breast cancer screening.
“We aim to enroll close to 3500 Black and brown women and follow them from their initial visit to the imaging center, where they may face unwarranted scrutiny, to the completion of their last treatment for those diagnosed with cancer. For low-income participants, we will cover the cost of their treatment if they receive a cancer diagnosis,” Blount shares.
The groundbreaking study will help researchers understand what is happening in our experiences with breast cancer screening.
“With this knowledge, we can advocate for changes in screening guidelines that are more reflective of our needs. Currently, decisions are being made based on incomplete information, which is unfair to Black women. By conducting this study, we hope to fill these knowledge gaps and ensure that all women, regardless of race or ethnicity, receive the care they deserve,” Blount adds.
Additionally, initiatives are underway to advocate for quality measures in breast cancer care that hold healthcare providers and systems accountable for providing the standard of care to all women, regardless of race or ethnicity.
“Over the next few years, we will advocate for quality measures to be associated with breast cancer care. This means that if Black women do not receive standard care and have poor outcomes, doctors will be held accountable. Currently, many states are not paying enough attention to these disparities,” Blount notes. “As Gen Z is the last majority white generation globally, in about 30 years, the average woman will be from a non-white background. Therefore, it is crucial to establish these policies, procedures, and standards of care now to ensure that future generations receive the care they deserve, regardless of their race or ethnicity."
What You Can Do
While efforts are being made to improve breast cancer screening guidelines for Black women, there are steps you can take to advocate for your health:
1. Know Your Family History
“We encourage all women to find out their family's cancer history, as many families have stories of relatives who died from cancer without a clear understanding of the cause,” Blount says.
This is extremely important because having a family history puts you at increased risk of developing breast cancer at a younger age.
"If a woman knows she has a family history of breast cancer but is under 40 and her doctor refuses to order a mammogram, she should be aware that she can still get a mammogram without a prescription,” Blount adds.
2. Seek Culturally Competent Care
“When it comes to care, it can be challenging to find physicians of color who can adequately address the needs of all Black and brown women. We encourage Black women to assess their comfort level with their physicians. Does your physician ask about your screening and family history? Do they seem genuinely interested in you as a person? If not, we encourage women to find a physician who values and respects them,” Blount says. “It's important to remember that good doctors come in all races and ethnicities, and what matters most is finding a physician who cares about your health and well-being. These are the doctors who will ensure you are informed about clinical trials and have the information you need to make the best decisions for your health."
3. Get Screened
"One important point is that screening mammography is available starting at age 40. This service is available without a copay, making it accessible and affordable for Black women. It's crucial that Black women take advantage of this opportunity,” Blount says.
4. Participate in Research
By participating in research studies, you can contribute to a better understanding of breast cancer and help improve future guidelines.
5. Modify Your Lifestyle
“To lower our risk, we can focus on lifestyle factors such as not smoking, eating a healthy diet, and getting plenty of physical activity. These behaviors have been shown to reduce the risk of developing breast cancer,” Blount adds.
To learn more about our groundbreaking breast cancer study and stay informed about our efforts to improve healthcare for Black women, visit Black Women’s Health Imperative.
