When it comes to survival rates for Black women with breast cancer, there is a harrowing statistic: Black women are 40 percent more likely to die from breast cancer than any other group. While the reasons for this are varied and complicated—structural racism in the health-care industry plays a huge role—one potential factor is that one in five Black women with breast cancer has triple-negative breast cancer (TNBC), which is an aggressive type that’s harder to treat than other forms.

These stats are something that Ricki Fairley, a stage 3A triple-negative breast cancer survivor, knows well. After being told that she had two years to live, Fairley, now 11 years out from her diagnosis, has made it her life’s mission to eradicate Black breast cancer and to support Black patients, survivors, and thrivers.

Fairley’s experience navigating the health care system as a Black woman with breast cancer—from diagnosis to getting a second opinion and fighting for better treatment, then a recurrence, and eventually surviving breast cancer—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 such an inspiration to me, and this organization is much needed in the Black community. The hardships that I came across in the health-care system as a young Black breast cancer patient are similar to those that Fairley experienced. When I was first having symptoms in my breast, I was denied a mammogram by my doctor and was told that I was too young. To my doctor, as a young Black woman, I didn’t look like the typical breast cancer patient. It wasn’t until I went back a month later and advocated for myself to get a mammogram, that I was diagnosed with stage 3 HER2-positive breast cancer in May of 2020 when I was just 33 years old.

The same year I began my cancer journey, Fairley co-founded Touch to support Black women with breast cancer and to change the dialogue around how this disease is treated in people of color. Their main focus is to bring patients, survivors, advocates, advocacy organizations, health-care professionals, researchers, and pharmaceutical companies together to create a change in the health-care system and to get better drugs and treatment options for Black breast cancer patients. One way they’re doing this is through their #BlackDataMatters movement, which encourages Black breast cancer patients to participate in clinical trials. For their first initiative, Touch partnered with the Morehouse School of Medicine and Ciitizen, a health data company, to facilitate an observational study, which is funded by the National Cancer Institute. The purpose is to empower Black people to take charge of their health data, and choose if they’d like to participate in research and clinical trials to further the understanding of Black breast cancer, as well as parse out any barriers to accessing or seeking out clinical trials in the Black community.

This is important because Black women make up less than 3 percent of clinical trial participants. Most Black breast cancer patients are either not made aware of them or are hesitant to participate due to misinformation about how clinical trials work. Education around the numbers—that Black women are more likely to die from breast cancer than white women—is only the first step. The truth is, those stats won’t change until researchers, doctors, and pharma companies understand the biology of Black women, and that starts with clinical trials. The more Black women that participate, the better researchers can understand how novel breast cancer treatments work for Black women.

Another way Touch is moving the needle for Black women with breast cancer is through facilitating conversations. From monthly support groups to quarterly retreats and live conversations, such as The Doctor Is In, Touch has multiple programs that help to educate, empower, and encourage Black women in taking action regarding breast health.

I wish I had known about the resources available at Touch when I was going through my breast cancer treatments. After one year of chemotherapy, surgery, and radiation, I am now in remission and almost three years out of my diagnosis. At the women’s oncology center, I’m usually the only Black woman there—let alone a young Black woman. Thankfully, through social media, I was lucky enough to have found both local and online support groups for Black women affected by breast cancer. It was so healing, comforting, and inspiring for me to have those connections with women that looked like me and understood firsthand what I was going through.

I had the pleasure of speaking to Fairley about her advocacy work and the importance of demanding better treatment for ourselves.

This interview has been edited and condensed for clarity.

Well+Good: Tell me about your experience being diagnosed with triple-negative breast cancer. What was that like?

Ricki Fairley: I was diagnosed during a regular checkup, but instead of getting my mammogram in July, I waited until September. My doctor found a lump and then I was diagnosed with triple-negative breast cancer. I had a double mastectomy, six rounds of chemo, and six weeks of radiation and was told that I had no evidence of disease. Then, almost exactly a year to the day that I finished treatment, they found five spots on my chest wall. My doctor said, “You are metastatic and you have two years to live,” and left me to my own devices.

The doctor only had two patients with TNBC and they both died within nine months. I had to take matters into my own hands. So I researched triple-negative breast cancer and found the TNBC Foundation. I contacted them and they sent me to an amazing doctor, who was one of five doctors that were researching TNBC [nationwide], and she put me on two drugs that were experimental at the time. So, I did more chemo and I didn’t die! I know that I am a miracle. I know that God 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 Black people with breast cancer?

RF: What needs to change is the mortality rate. We are not being treated well and that is why I created Touch. I had good care but my doctor wasn’t educated about TNBC and she basically wrote me off, and I had to get better care for myself. I wasn’t going to take no for an answer—I wasn’t going to take death for an answer. We’re not getting the care we deserve.

I wasn’t going to take no for an answer—I wasn’t going to take death for an answer.

W+G: What inspired you to create Touch?

RF: Black breast cancer is different and I realized that big pharma companies that make all these drugs never had a picture of Black breast cancer. As an advocate, I started to speak with pharma companies and began to ask questions like, “Why don’t we have drugs for TNBC?” and, “Why do Black women get TNBC breast cancer at two times the rate?” I started raising awareness on social media about Black breast cancer and realized that there was a huge audience of Black women that were interested in this and then I started Touch.

I want to advance science, I want to put all of us out of a job, and I want to eradicate Black breast cancer. And I don’t want anyone to die of breast cancer but I at least want mortality rate parity for Black women. We deserve more and our disease is different. In order 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 more needs to be done?

RF: I forced my way to a seat at the table, and [Touch has] so much support from pharma companies. In fact, we are currently working on a clinical trial with one of them. With our outreach efforts, we have signed up 5,000 Black women to participate in clinical trials but I want to sign up a million. I want to move the needle on the percentage of participation in clinical trials. I want more legislation to mandate participation—like, Guess what pharma? Your drug cannot be approved unless it was tested on Black bodies. Give me a trial just for Black women. I won’t rest until we get those drugs and better science. The U.S. Food and Drug Administration has to mandate it and pharma needs to do the work.

W+G: What is your advice to Black women who have recently been diagnosed?

RF: Get the best care you can. If you have a doubt that your doctor is not doing the right thing, get another doctor. It’s okay to fire the doctor, it’s okay to challenge the system and ask the questions that you need to ask. And call me, we can help you!

Make sure your doctors are on top of the best drugs. If you are a Black woman under 40, a clinical trial is your best treatment option and we can help to find one in your area. Don’t be afraid to stand up for yourself. Take someone with you to your appointments because you’re not going to hear everything you need to hear. If you don’t have someone to go with you, [Touch has] 40 breasties around the country that will go with you or FaceTime with you. Just know in your spirit that you are a survivor from the minute you are diagnosed and fight like a girl!

W+G: What is your message for 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 grandmothers and your aunties and your cousins and make health a conversation at the kitchen table with your family. We don’t talk about health until something happens to someone in the family. Also, do the right thing: Take a walk every day and if you can’t walk, just sit outside and take in nature. Move your body and take care of yourself.

This story is a part of Black [Well] Being, examining the state of Black health and well-being in the U.S.—and those working to change outcomes for the better. Click here to read more.