Deaths from breast cancer create huge holes in families and communities that cannot be filled. This disease kills nearly 44,000 people in the US each year, and a staggering 685,000 around the world.
In the US, breast cancer disproportionately affects women of color. Black women are 41% more likely to die of breast cancer than white women and have a 39% higher risk of recurrence. Triple-negative breast cancer (TNBC), which accounts for up to 20% of new breast cancersis of particular concern for these groups.
With the numerous policy promises being made to advance health equity, it is past time for lawmakers in Washington to double down on policies proven to save lives of undersupported groups who bear the brunt of disparities when it comes to early breast cancer screening.
I have my mother to thank for teaching me at a young age to know my body and to perform breast self-examinations. At 31, I felt a lump in my breast and knew right away it did not belong there. Yet I was denied the necessary testing for breast cancer because the doctor said I was “too young” and that I should come back when I was in my 40s as women my age don’t get breast cancer. After relentlessly calling the doctor for six months, I eventually had a biopsy. I was diagnosed with triple-negative breast cancer the next day. Black women are 38% more likely to be diagnosed with stage 4, metastatic triple-negative breast cancer than white women. Had I waited longer, I wouldn’t be alive today and would have become just another statistic.
The disease gets its name because the cancer cells are negative for three key receptors — estrogen receptors, progesterone receptors, and the human epidermal growth factor receptor 2 (HER-2). Medicines to treat breast cancer generally target these receptors, so their absence means there are limited treatment options.
Triple-negative breast cancer is aggressiveis often diagnosed at later stages, and is more likely to spread to other parts of the body than other types of breast cancer. Individuals diagnosed with metastatic TNBC have just a 12% chance of surviving longer than five years and there is a higher chance of it recurring compared to other types of breast cancer.
Black women are three times more likely than white women to be diagnosed with triple negative breast cancer and have the lowest survival rate at each stage of diagnosis. Hispanic women are also diagnosed with the triple-negative subtype more often and have a higher risk of mortality from it compared to non-Hispanic white women.
Triple-negative breast cancer is more common in young womenand those diagnosed with breast cancer under the age of 40 are twice as likely to have TNBC than those between the ages of 50 and 64.
There is a lack of consensus and clear direction in breast cancer screening guidelines for younger people, which inadequately reflects the circumstances of those at risk for TNBC. Many women have similar experiences as I did — dismissed by their care provider when they present with abnormalities at a younger age.
One influential guideline from the U.S. Preventive Services Task Force recommends biennial mammograms beginning at age 50, though it acknowledges that some people may be eligible at age 40. American Academy of Family Practice and the American College of Physicians advise starting mammography screening at age 50. In contrast, the American College of Radiology and the American College of Obstetricians and Gynecologists recommend mammograms beginning at age 40.
Unfortunately, none of the recommendations indicate risk-based screening before the age of 40, when more than 40% of the reported TNBC cases are diagnosed.
Due to lack of awareness of triple-negative breast cancer and provider apathy, many young people, particularly those of color, don’t get the screening they need or run into barriers when seeking care.
Delays in breast cancer screening due to the Covid-19 pandemic, lack of insurance, lack of disease awareness, health care provider bias, and other structural barriers can be exceptionally devastating for women who have triple-negative breast cancer.
Congress can make an investment to address these inequities.
This problem isn’t new. More than 30 years ago, at the direction of Congress, the Centers for Disease Control and Prevention created the National Breast and Cervical Cancer Early Detection Program to meet the needs of uninsured and underinsured women. But what should be a robust national program reaches only 15% of the women who are eligible for it.
The disparities that exist in the area of breast cancer might look different today if the National Breast and Cervical Cancer Early Detection Program had been adequately funded decades ago and uninsured and underinsured individuals, many of whom are women of color, had received free screening and, if needed, diagnostic and treatment services. We will never know.
Concerned members of Congress are aware of the problem. In both the House and Senate labor and health and human services appropriations bill, they have included a $10 million increase for the National Breast and Cervical Cancer Early Detection Program. They also included specific report language regarding the need to increase awareness of triple-negative breast cancer and incorporate intervention strategies to help address inequities in breast cancer screening and diagnosis, focusing efforts on women who are geographically or culturally isolated and part of certain racial and ethnic groups. In addition, as part of the Cancer Moonshot initiative, $3 million has been allocated to expand efforts for breast cancer awareness among young women.
As a survivor of triple-negative breast cancer who many years ago had to fight systemic barriers entrenched in the health care system to receive the testing and diagnostic evaluations I knew were needed, I understand the importance of receiving timely access to lifesaving services and treatments. With this additional funding, more young people from Black and Hispanic communities will receive the care they need before it is too late.
I applaud congressional leaders for their support of Black, Hispanic, and younger women who are at increased risk for all forms of breast cancer, especially TNBC, and who depend upon essential programs like the National Breast and Cervical Cancer Early Detection Program. While the developments in Congress and the Cancer Moonshot are important steps, breast cancer patients and survivors have a responsibility to continue to advocate for subsequent appropriations and policy changes aimed at further addressing the significant inequities among Black, brown, and younger women with breast cancer.
Maimah Karmo is the founder and CEO of the Tigerlily Foundationa national breast cancer foundation providing education, awareness, advocacy, and support to young women during and after breast cancer.