Commentary://March 30, 2023
//March 30, 2023
When I was diagnosed with stage three triple-negative breast cancer (TNBC) that became metastatic within a year, I was given just two years to live. That was 11 years ago. Thanks to a second opinion, treatment with experimental drugs, and the support of my family and the Triple Negative Breast Cancer Foundation, I am now a survivor and a thriver.
I have since dedicated my life to ensuring Black women in Maryland and across the country who receive a similar diagnosis are given the best chance to do the same. But like my experience – it takes a village to conquer this complex and devastating form of breast cancer and the many obstacles that accompany it, such as barriers to accessing quality of care across the spectrum of care and the historic underrepresentation of Black women in clinical trials.
Today, breast cancer claims nearly 44,000 lives in the U.S. a year. In Maryland, nearly 6,000 women will be diagnosed with breast cancer this year and a number of studies find 10-20% of breast cancer cases are triple-negative, which disproportionately affects Black, brown, and younger women.
Triple-negative breast cancer (TNBC) is aggressive and more challenging to treat than other types of breast cancer because of the absence of three key receptors, estrogen, progesterone, and HER-2 protein, which are normally targeted by treatments. Black women are nearly three times as likely than white women to receive a TNBC diagnosis and are 28% more likely to die of TNBC than white women.
These sobering statistics alone showcase the need to develop policy-driven actions to address gaps in cancer care.
Despite the great strides already made toward increasing access to screenings and effective treatments, more work must be done to ensure all women have access to care. There must be an intentional, collective, and relentless pursuit to educate Black women about TNBC and encourage them to participate in clinical trial research meant to help scientists study biological responses to medications.
Part of that effort includes simply giving Black women the information they need to participate in clinical trials with relevant messaging from the right voice. A recent clinical trial survey of patients living with metastatic breast cancer found that 83% of Black respondents were somewhat or very likely to consider participation, yet 40% say they were never informed by their medical teams about the opportunity to enroll.
That is compared to 33% of white patients who were never given information. This is unacceptable. It is why advocates are actively educating and empowering Black women with the information they need to understand the importance of clinical trial participation.
Advancing the science is crucial to ensuring TNBC survival, but equally as important is the ability for women to access screenings and treatments. A recent study finds that diagnostic mammograms can cost as much as $234 and a breast MRI can be more than $1,000. Women who have an abnormal mammogram and need additional testing often have to meet significant out-of-pocket costs just to get to their next appointment.
It is exactly why we must lean on the support and implementation of policies such as a Maryland House bill that is making progress in the General Assembly that would prohibit copayments, coinsurance, or deductibles for diagnostic and supplemental breast examinations.
The state is on the right track, as lawmakers are also considering the establishment of a breast and lung cancer screening awareness program. This would require insurers to provide coverage for breast cancer diagnosis – including diagnostic imaging, which is crucial in the treatment process.
We must also ensure lawmakers in Washington understand the critical importance of increased funding for the National Breast and Cervical Cancer Early Detection Program, which from 2016 to 2021 helped 10,000 Maryland women receive breast cancer screening and diagnostic services. Early detection, diagnosis, and treatment are what saved my life and countless others.
It takes a collaborative effort by advocates, scientists, and lawmakers to turn the tide against TNBC . My story should become normalized instead of an aberration for Black, brown, and younger women. But only together can we tackle this disease and ensure better care that leads to improved outcomes so that future generations can live in a world where TNBC and all forms of breast cancer do not exist.
Ricki Fairley is a triple-negative breast cancer survivor, CEO and co-founder of TOUCH, The Black Breast Cancer Alliance and Founder of WhenWeTrial.org.