Touch, Black Breast Cancer Alliance
This Breast Cancer Awareness Month, it’s time to clearly understand what a diagnosis may mean if you are a Black woman. Ricki Fairley she lived in this reality and now advocates for other women who look like her, whether they have been diagnosed or not. After being diagnosed with stage 3A triple-negative breast cancer in 2011, Fairley underwent a double mastectomy, six rounds of chemotherapy and six weeks of radiation therapy. She was cured completely, but a year after the initial diagnosis, the disease reappeared on a later ultrasound examination. She recalls being told, “You have five spots on your chest wall. You have two years to live. Get your affairs in order.”
In desperation, Fairley searched the Internet for triple-negative breast cancer doctors and was eventually treated by a doctor who laid the foundation for her work today. “She prescribed me experimental drugs that were in clinical trials; I went through a lot more chemotherapy and I didn’t die,” she says. “It’s been 13 years. This is my God-given mandate – I have been advocating ever since.”
In 2020, Fairley was a co-founder Touch, Black Breast Cancer Alliancea Maryland-based nonprofit organization. “We are trying to pull you out of the darkness, help you, turn on the light,” he says. Fairley is also working with pharmaceutical company Novartis on this Understand eCB risks a campaign to raise awareness of the likelihood of re-fighting the disease in patients with early-stage breast cancer (people with stages 1, 2 and 3).
Initial idea
I have supported many health-related organizations over the years and noticed a gap in the science. I started looking at the statistics and they are terrible. We are in a state of crisis – black women have a 41 percent higher mortality rate than white women, and we don’t really know why – although we have some clues. Black women under 35 develop breast cancer at twice the rate of white women, die at three times the rate and have a 39 percent higher recurrence rate than white women. We need better science, but the percentage of black women in clinical trials is only about 3%.
We are in a state of crisis – black women have a 41 percent higher mortality rate than white women, and we don’t really know why.
Initial goal
I started Touch because I wanted to focus on advancing science and providing better learning for Black women. Two and a half years ago, we launched a program to educate Black women about clinical trials. We did some research and found out that the reason black women don’t participate is because for whatever reason – prejudice, racism – doctors don’t invite us. The second important reason is this: we think we will take a sugar pill and die. We don’t understand that we will receive the standard of care. At Touch, we break down the science and explain it to women in words they can spell (versus technical jargon).
The moment you thought this might just work
Thanks to one of our recent campaigns, our community reached over half a million women aged 18 to 35. We changed the way 80 percent of women thought about breast health and taught them something they didn’t know before, like how to examine their breasts. We have an internship program for blacks in colleges and universities – we have had 105 interns in the last four years and we currently have 15.”
We need better science, but the percentage of black women in clinical trials is only about 3%.
Over the last two and a half years, we’ve had 20,100 Black women who were looking for a trial log in to our portal using our When we try campaign. We recently launched a campaign called Touch Care with 24/7 nursing navigation. Patients can call us after business hours and get a nurse navigator who is a navigator, nurse and “Blessing” She’s a breast cancer survivor and she’s black, so a black woman can call and find someone she can see herself in and ask questions.
Why self-presentation is necessary
Breast cancer is a crisis for black women. We live in a world where we do not have health equity, and we will not have it until everyone in our ecosystem applies the golden rule: treat others as you would like to be treated. This is how we treat patients. You go back to that doctor and ask, “Would you recommend this to your mother, aunt, grandmother or daughter?” If it’s not good enough for them, it’s not good enough for me. We teach women how to arm themselves so they can advocate for themselves and get the best care possible.
The most satisfying part
It’s seeing healthy women and the growth of my partners with metastatic disease. None of us can do this alone, otherwise we would already have the cure. So just having partnerships, friends and relationships that give us a bigger platform is very rewarding.
A vision that keeps me alive
In my perfect world, I would buy a Victorian house in every black neighborhood where you could walk down the street, open the wrought-iron fence, walk onto the porch, and a beautiful black grandmother would hug you. He takes your three children to the playroom, feeds them spaghetti, takes you to the treatment room, gives you a comfy chair, a blanket and a cup of tea, turns on Luther Vandross and gives you a shot. We strive to bring love to every situation.
This interview has been condensed and edited for clarity.
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Jane Burnett is an Associate Editor at Oprah Daily, where she writes a variety of lifestyle content for the editorial team. She’s a journalist with a penchant for pop culture – when she can’t keep up with celebrity news, she usually listens to a podcast! Jane was previously a local news reporter and worked at Thrive Global, Ladders News and Reuters. She also interned at CNBC through the Emma Bowen Foundation and is a member of the National Association of Black Journalists (NABJ).