Ricki Fairley, Co-Founder of TOUCH, The Black Breast Cancer Alliance Shares Why Clinical Trial Participation Will Help Black Women Beat Breast Cancer

Here’s the sad truth: Black women are dying from breast cancer at alarming rates.

According to the American Cancer Society, Black women are 41% more likely to die from breast cancer than white women, and increased participation in clinical trials is one of the ways this disparity can be remedied. Making that change won’t be simple. Currently, Black women only make up about 3% of clinical trial participants. Ricki Fairley, CEO of TOUCH, The Black Breast Cancer Alliance, is a leader in the movement to save the lives of Black women everywhere. Through When We Tri(al), TOUCH, Breastcancer.org, and a wide network of partners are demanding research inclusion, an increase in the footprint of Black women in health care and better treatment of Black women by the health care system at large.

EBONY spoke with Fairley to discuss her personal journey with cancer, insights into the healthcare system and, perhaps most important, why participation in clinical trials is the key to saving the lives of Black women.

EBONY: Tell us about your movement.

Ricki Fairley: In 2020, I co-founded TOUCH, The Black Breast Cancer Alliance. I fight like a girl every day to make sure that Black women are informed about their health care options. With Breastcancer.org as a founding partner, we launched our When We Tri(al) movement in January 2022 with a goal to meet Black women where they live, work, play and pray. Our outreach has focused on Black Breasties (women who have been diagnosed with breast cancer) to make sure they are armed with the information they need to talk to and advise other Black Breasties about clinical trials. All Black women should know about the importance of clinical trials before they need one.

EBONY: As a breast cancer survivor, this mission truly hits home for you. What was your experience like?

Fairley: I’m a miracle. After a double mastectomy, six rounds of standard of care chemotherapy, six weeks of radiation, and reconstruction, I was told that my triple negative breast cancer was gone. Triple Negative Breast Cancer (TNBC) is an incredibly aggressive and difficult to treat breast cancer subtype with a high mortality rate, few treatment options, and no drugs to prevent recurrence. Almost exactly a year to the date of my initial diagnosis, a PET scan showed that the TNBC had come back on my chest wall. My doctor told me that I was now metastatic and to get my affairs in order—I had two years, at the most, to live. 

EBONY: That is a grim diagnosis. We often look at our doctors as the ultimate experts, but you decided not to stop with your doctor’s prognosis. What made you fight?

Fairley: This doctor had only seen two TNBC patients before me and both died within nine months. Her minimal experience with TNBC and lack of knowledge of Black Breast Cancer led her to believe that there were no treatment options left for me. But I wasn’t ready to die. I was the breadwinner for my family and the rainmaker for my company. I felt the responsibility to give my daughter, who was still in college at the time, the education she deserved. I did my own research and found the Triple Negative Breast Cancer Foundation, which recommended one of a very few oncologists in the US who understood TNBC. She put me on two experimental drugs that have now become standard of care treatments for TNBC. Today, I’m a ten-year breast cancer survivor with no evidence of disease.

EBONY: It’s clear that those experimental treatments likely saved your life. Tell us about how this led to your work with TOUCH, The Black Breast Cancer Alliance, and When We Tri(al).

Fairley: I realized that I was an exception. The facts are astounding: Black women under 35 get breast cancer at two times the rate of white women and die at three times the rate — well before they would have had their first mammogram. Black women diagnosed with breast cancer under 50 die at double the rate of white women. TNBC affects Black women at three times the rate of white women. Black women diagnosed with breast cancer have a 39% higher recurrence rate.

EBONY: These statistics are disheartening and impact Black families all around the country. What role do clinical trials play in this?

Fairley: Clinical trials set the standards for breast cancer treatments, but barely include Black bodies. Only 3% of clinical trial participants are Black. Which means that most breast cancer treatments have been and continue to be trialed on older white women. A treatment that works for an older, earlier stage white patient may not work the same for a young Black woman. The truth is, we can’t know without more research and data. In order to test how drugs work on Black bodies and keep Black Breasties from dying at higher rates, we need more Black women in clinical trials. But sadly, many Black women are never even offered clinical trial participation by their doctors.

EBONY: In short, clinical trial participation can help researchers uncover treatment options that will work uniquely for Black women. Still, inequities, exclusion and predatory procedures have made Black people hesitant of clinical trials. Why is it important for Black people to change this messaging and participate in clinical trials now?

Fairley: Demanding that our bodies be included in clinical research is fraught with complications and challenges. Growing up, I had friends whose parents wouldn’t let them walk past Johns Hopkins Hospital. They were scared that Black kids would be snatched off the street for experimentation. Even today, the shadow cast by what has been done to Black bodies in the name of research—the men and families of the Tuskegee Syphilis Study, the legacy of Henrietta Lacks, the countless forced hysterectomies and gynecological procedures performed on Black women—is problematic. Our community will never forget these horrific truths. 

Still, this is a matter of life and death for Black women. We need to participate in clinical trials, if not for ourselves, for future generations of young, Black Breasties: our daughters, sisters, nieces and friends. Young Black women shouldn’t have to continue to rely on drugs that were not designed for them.

EBONY: Given the troubled history of Black people and clinical trials, what do you tell people who don’t feel safe?

Fairley: We can’t change the past, but we will change the future. Research is now designed to protect patients—researchers must follow strict rules to ensure clinical trials are safe for us, and participants’ health is carefully monitored during a study. Federal organizations such as the Food and Drug Administration and the Office of Human Subjects Research Protection help enforce protections for participants. We can’t let fear and mistrust stop us from advancing the science for Black Breast Cancer and saving Black lives.

EBONY: This is truly an uphill battle. What keeps you motivated?

We owe it to each other to be informed about Black Breast Cancer and about clinical trials. One of my mottos is #GSD (get shit done!). If we #GSD together, imagine the difference we can make in breast cancer research. I do this work because of my community and my grandbabies. I don’t want them to ever have to think about breast cancer. When we tri(al), we can make that a reality. When we tri(al), we save Black lives.

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