ABOVE PHOTO: This undated photo provided by Touch, The Black Breast Cancer Alliance shows CEO and co-founder of Touch Ricki Fairley, a 11-year late-stage breast cancer survivor and advocate. Fairley is fighting hard to improve the chances for Black women to overcome breast cancer and to address the racial disparities in treatment. (Touch, The Black Breast Cancer Alliance via AP)
By Anne D’Innocenzio
NEW YORK — Ricki Fairley, a 11-year late-stage breast cancer survivor and advocate, is fighting hard to improve the chances for Black women to overcome breast cancer and to address the racial disparities in treatment.
Before her diagnosis in 2011, Fairley, 66, was a seasoned marketing executive with stints at such companies as Coca-Cola, Nabisco, and Johnson & Johnson. Then, her diagnosis with a late-stage breast cancer subtype that quickly spread to her chest wall dramatically changed her life.
Told she only two years to live, Fairley turned to more aggressive treatments that left her with no evidence of disease. Fairley started to embrace breast cancer advocacy for Black women. But then in 2020, she quit her job and co-founded a nonprofit foundation called Touch, The Black Breast Cancer Alliance to help turn the tide on Black women’s survivorship after seeing a mountain of studies showing how Black women are disproportionately affected by breast cancer.
The nonprofit group collaborates with patients, survivors, advocacy organizations, and pharmaceutical companies among others to improve breast cancer care for Black women. In January, she started her “When We Trial” project to recruit Black women for trials. Since May, she has recruited roughly 5,000 Black women to clinical trial portals.
Fairley’s work comes as Black women are twice as likely as women of other racial and ethnic groups in the U.S. to be diagnosed with triple negative breast cancer, the same subtype she had. It’s harder to treat and is more likely to spread throughout the body.
Black women are about 40% more likely to die of overall breast cancer, according to the American Cancer Society. A big problem: Black patients made up 12% of new breast cancer cases in 2020, but only 3% of the participants in breast cancer clinical trials that led to U.S. Food and Drug Administration approvals between 2008 and 2018, according to a study published in JAMA Oncology, a monthly medical journal.
The Associated Press recently interviewed Fairley about why Black women are underrepresented in trials, her goals for her nonprofit and how she has been inspired by her late father Richard Fairley, a civil rights leader. The interview has been edited for clarity and length.
Q. How did you change your life after your breast cancer diagnosis?
A. I had to learn that my peace is non-negotiable. And I made a lot of changes in my life. So, I divorced my husband of 30 years. I quit my business partner of 10 years. I sold my big house in the suburbs, and I moved to the beach. I quit my job, and I started my own company to really work for myself because I felt like I could make more money to put my daughter through school.
Q. What do all these statistics about Black women and breast cancer show?
A. Black breast cancer is different. It’s a unique disease that we have to address differently.
Q. Why aren’t Black women in clinical trials?
A. Doctors don’t invite them. They use a lot of their implicit bias to feel like Black women are not going to be good candidates for clinical trials. And secondly, it’s a fear (by Black women) of the unknown… And they say stuff like, ‘I’m going to get the sugar pill and die.’ Well, there is no sugar pill in cancer research.
Q. Where do you find Black women for your trials?
A. I wanted to go where Black women live, work, pray, play, and slay. And I wanted to reach people….cancer or no cancer. And we’re finding that when we go to events that are not health-related, we get more traction because we catch people off guard and start talking about breast cancer. So, we’ve gone to a lot of conferences. And we went to a couple of hair shows. We went to churches, and we’re still out there in the world now.
Q. How do you apply your marketing background to your work?
A. I wear my brand everywhere I go in some form or fashion, whether it’s a T-shirt or something. I wear pink shoes a lot to have these conversations, but I really approach it with strategic acumen. And so, all of the messaging and the words and the visuals, everything that we put into the marketplace we labor over to make sure that we have the right words, the right pictures, the right people, the right videos to really get our message across in a very clear and concise way.
Q. What is your goal for Touch?
A. My lofty goal for Touch is to make clinical trial represent representation commensurate with the burden of disease. And make that a mandate so if I’m testing a drug for triple negative breast cancer, it reflects the numbers of Black women that get that disease. And if I could make breast cancer go away, I would make it go away in a heartbeat. But I definitely want mortality rate parity for Black women. We deserve the science. We deserve the drugs that work on our bodies.
Q. How were you inspired by your late father?
A. My dad was an amazing civil rights leader. He stood along with Martin Luther King. He actually was one of the people that did the Ruby Bridges thing where he would drive Black kids to the white schools for their first day of school when they integrated school. But he was a powerhouse, and he taught me one really important thing: No is never the answer. And he said, ‘if you can’t think of how, then you’re not thinking hard enough.’