Improving survival rates for black women with breast cancer
These statistics are something that Ricki Fairley, a stage 3A triple negative breast cancer survivor, knows well. After being told she had two years left to live, Fairley, now 11 years since her diagnosis, has made it her life’s mission to eliminate Black breast cancer and support Black patients, survivors and developers.
Fairley’s experience in navigating the health care system as a Black woman with breast cancer—from diagnosis to getting a second opinion and struggling to get better treatment, follows Her relapse and ultimately breast cancer survival—inspired her to create the kind of support that had been missing in her own journey. And so Touch, The Black Breast Cancer Alliance was born.
As a Black breast cancer survivor myself, Fairley is an inspiration to me and the organization is so much needed in the Black community. The difficulties I faced in the health care system as a young black breast cancer patient were similar to those experienced by Fairley. When I first had breast symptoms, the doctor refused to do a mammogram for me and said I was too young. To my doctor, as a young black woman, I didn’t look like a typical breast cancer patient. It wasn’t until I returned a month later and advocated for myself for a mammogram that I was diagnosed with HER2-positive stage 3 breast cancer in May 2020 when I was 33 years old.
The same year I started my cancer journey, Fairley co-founded Touch to support Black women with breast cancer and change the conversation around how the disease is treated in people of color. Their primary focus is bringing together patients, survivors, advocates, advocacy organizations, healthcare professionals, researchers and pharmaceutical companies to create change in the health care system and to get better medicines and treatment options for Black breast cancer patients. One way they are doing this is through the #BlackDataMatters movement, which encourages Black breast cancer patients to participate in clinical trials. For their first initiative, Touch teamed up with Morehouse School of Medicine and Citizen, a health data company, to facilitate an observational study, funded by National Cancer Institute. The goal is to empower Blacks to take charge of their health data and choose whether they want to participate in research and clinical trials to understand more about Black breast cancer, as well as analyzing any barriers to accessing or finding clinical trials in the Black community.
This is important because Black women make up less than 3% of clinical trial participants. Most Black breast cancer patients are either unaware of them or hesitant to participate due to misinformation about how clinical trials work. Educating the numbers — that black women are more likely to die of breast cancer than white women — is just the first step. The truth is, those statistics won’t change until researchers, doctors, and pharmaceutical companies understand the biology of Black women, and that starts with clinical trials. ready. The more Black women involved, the better researchers understand how new breast cancer treatments work for Black women.
Another way Touch is empowering Black women with breast cancer is through facilitating conversations. From monthly support groups to quarterly retreats and live chats, such as The Doctor Is In, Touch has a variety of programs that help educate, empower, and encourage Black women to take action. for breast health.
I wish I had known about the resources available at Touch while I was being treated for breast cancer. After a year of chemotherapy, surgery and radiation, I am now in remission and almost three years after being diagnosed. At a women’s cancer center, I’m usually the only Black woman there—let alone a young black woman. Thankfully, through social media, I have been fortunate to find support groups both locally and online for Black women with breast cancer. I feel so healed, comforted, and inspired to have those relationships with women who look like me and understand firsthand what I’m going through.
I had the pleasure of talking to Fairley about her advocacy work and the importance of demanding better treatment for ourselves.
This interview has been edited and condensed for clarity.
Good + Good: Tell me about your experience being diagnosed with triple negative breast cancer. That’s how?
Ricky Fairley: I was diagnosed during a routine check-up, but instead of having a mammogram in July, I waited until September. My doctor found a lump and I was later diagnosed with triple negative breast cancer. I had a double mastectomy, six rounds of chemotherapy and six weeks of radiation and was told I had no signs of illness. Then, almost a year from the day I finished treatment, they found five marks on my chest wall. My doctor said, “You have metastases and you only have two years to live,” and let me take care of myself.
The doctor only had two patients with TNBC and both died within nine months. I had to take matters into my own hands. So I researched triple negative breast cancer and founded the TNBC Foundation. I contacted them and they sent me to see a wonderful doctor who is one of five doctors who are working on TNBC [nationwide], and she gave me two drugs that were being tested at the time. So I did more chemotherapy and I didn’t die! I know that I am a miracle. I know that the Lord left me here to do this work, and I have been an advocate ever since.
W + G: What made you realize that something needed to change around the diagnosis and treatment of Blacks with breast cancer?
RF: What needs to change is the mortality rate. We weren’t treated well and that’s why I created Touch. I was well taken care of but my doctor was not trained in TNBC and she basically got rid of me, and I had to take better care of myself. I will not accept no as an answer—I will not accept death for an answer. We are not getting the care we deserve.
I will not accept no as an answer—I will not accept death for an answer.
W+G: What inspired you to create Touch?
RF: Black breast cancer is different, and I realized that the big drug companies that make all these drugs have never had a picture of Black breast cancer. As an advocate, I started talking to pharmaceutical companies and started asking questions like: “Why don’t we have a drug for TNBC?” and, “Why do Black women get TNBC breast cancer at twice the rate?” I started raising awareness on social media about Black breast cancer and realized that there was a large audience of Black women interested in the issue and then I started Touch.
I want to advance science, I want all of us to lose our jobs, and I want to eliminate black breast cancer. And I don’t want anyone to die of breast cancer, but at least I want the same death rate for Black women. We deserve more and our disease is different. To change these numbers, we need better science, we need better drugs, and we need more Black women in clinical research.
W+G: What progress have you seen and what needs to be done?
RF: I was forced to take a seat at the table, and [Touch has] lots of support from pharmaceutical companies. In fact, we’re currently running a clinical trial with one of them. With our outreach efforts, we’ve already enrolled 5,000 Black women in a clinical trial, but I want to enroll a million. I want to move the needle about participation rates in clinical trials. I would like more laws to make participation mandatory—like Guess which pharmacy? Your drug cannot be approved unless it has been tested on black people. Give me a trial just for Black women. I won’t rest until we get those drugs and better science. The US Food and Drug Administration has to authorize it, and the drug needs to do the job.
W+G: What is your advice to newly diagnosed Black women?
RF: Get the best care you can. If you suspect that your doctor is not doing it right, find another doctor. It’s okay to fire the doctor, it’s okay to challenge the system and ask the questions you need to ask. And give me a call, we can help you!
Make sure your doctors are on top of the best medicines. If you’re a Black woman under 40, a clinical trial is the best treatment option for you, and we can help find one in your area. Don’t be afraid to stand up for yourself. Take someone with you to appointments because you won’t hear everything you need to hear. If you don’t have anyone with you, [Touch has] 40 nannies from around the country will come with you or FaceTime with you. Just know in your soul that you are a survivor from the moment you were diagnosed and fight like a girl!
W+G: What is your message to women everywhere?
RF: Know your body, stand in front of the mirror. Know your ‘Herstory’ and talk to both sides of your family—mom and dad. Talk to your grandma and your aunt and your cousin and turn health into a kitchen table conversation with your family. We don’t talk about health until something happens to someone in the family. Also, do the right thing: Go for a walk every day, and if you can’t walk, just sit outside and be in nature. Move your body and take care of yourself.
This story is part of Black [Well] Examining the health and well-being of Blacks in America—and those working to change outcomes for the better. Click here to read more.