Ricki Fairley wears pink shoes for the entire month of October, one of many things she does to help raise awareness during Breast Cancer Awareness Month.
However, every day of every month, she works tirelessly to encourage Black women to participate in clinical trials for breast cancer.
In 2011, after an annual mammogram, Fairley was diagnosed with stage 3A triple-negative breast cancer, an aggressive form of breast cancer that has a poorer outlook than other types. She was 55 years old.
“I did a double mastectomy, six rounds of standard of care, very aggressive chemo, 6 weeks of radiation, and a year to the day, my cancer came back. They found black spots on my chest wall. My doctor said I was metastatic and I needed to get my affairs in order,” Fairley told Healthline.
She immediately called the Triple Negative Breast Cancer Foundation, which gave her a referral to a specialist in Atlanta, where she lived at the time.
“[She] put me on experimental drugs at the time, which are now standard of care for triple-negative, and it’s been 10 years,” Fairley said.
While going through treatment, she learned that Black women have a threefold increased riskTrusted Source of triple-negative breast cancer.
Although social detriments of health are often pointed to as the reason for health disparities, Melissa Davis, PhD, scientific director of the International Center for the Study of Breast Cancer Subtypes at Weill Cornell Medicine, said scientists are finding associations with genetic ancestry, specifically West African ancestry, that correlate with triple-negative breast cancer (TNBC) risk.
“Specific alleles that are African specific are also showing significant ancestry-associated TNBC risk (REF). This would also be seen in Latinx communities as several groups (when disaggregated) have a significant amount of African lineage,” Davis told Healthline.
However, she added that emerging data from large population studies, with better inclusion of diverse Latinx and African populations and that investigate ancestry, are needed to validate these theories.
Fairley agrees that more studies uncovering why Black women get breast cancer are needed.
However, learning that Black women are 41 percent more likely to die from breast cancer than white women made her think there must be a connection with treatment or lack of it.
Fairley started digging into clinical trials and discovered that Black women are drastically underrepresented in clinical trials.
Only 3 percentTrusted Source of participants in clinical trials that led to Food and Drug Administration (FDA) approval of cancer drugs between 2008 and 2018 were Black, she discovered.
“Everyone wants to blame it on social determinants of health — you don’t have good access to care, you go to community hospitals, you don’t have money to buy drugs, you’re the poor Black woman. But I said there has to be more than that,” she said.
This notion and the fact that experimental medications saved her life inspired Fairley to focus on getting more Black women involved in clinical trials.
“I feel like I’m still alive to advocate,” she said.
Connecting Black women with clinical trials
In 2020, Fairley founded the organization Touch, The Black Breast Cancer Alliance, which aims to eradicate breast cancer in Black people.
This year, Fairley teamed up with Breastcancer.org to launch When We Tri(al), a movement dedicated to empowering and educating Black women on the importance of clinical trial participation.
“When you dig back in history and look at the drugs that are standard of care for breast cancer, there are no Black women in trials, or some studies where there were Black women, they died, so we have never been a consideration in the research, and the only way we’re going to change those numbers is to get drugs that work with our bodies,” said Fairley.
Dr. Oluwadamilola “Lola” Fayanju, chief of breast surgery at Penn Center for Cancer Care Innovation, said Black women’s participation in clinical trials ensures a wide range of potential barriers — including mode of delivery, side effects, the timing of administration, and treatment adherence and tolerance — are addressed during the trial period before becoming publicly available.
However, she said one of the main barriers to getting Black women to participate in clinical trials is that their doctors don’t ask them.
“[And] when they are, they may not be asked in ways that reflect their concerns about bias, choice, and the temporal and financial costs associated with participating,” Fayanju told Healthline. “The recruitment and consent processes need to be tailored to address the needs and priorities of Black women.”
Additionally, Fairley found that misinformation from some breast cancer survivors, or Black “breasties,” as she calls them, is another reason Black women aren’t participating in trials.
She discovered this based on a focus group her organization conducted, which included 48 qualitative interviews and a quantitative study of 200 Black women.
“We heard breasties were giving wrong information, like ‘You don’t want the sugar pill because you’ll die.’ The truth is there are no sugar pills in cancer trials. You either get a standard-of-care medication or the new one,” Fairley said.
Additionally, justifiable mistrust of clinical trials exists due to studies like the Tuskegee Study, which observed untreated syphilis in Black populations without participants knowing this was the case. Participants were told they were receiving treatment for “bad blood,” yet they received no treatment at all.
When We Tri(al) aims to educate Black women about the fundamentals of clinical trials today and empower them to participate. Messaging includes statements like:
- The stuff that happened 50 years ago can’t happen now — there are laws in place to protect you.
- This is a viable and potentially lifesaving option for you.
- That Advil you took last week was in a clinical trial, and the Tylenol you gave your baby was in a clinical trial.
- When you are in a clinical trial, you have better outcomes because you get more supervision from doctors, more scans, more treatment, and more blood work.
- Because we don’t have data on the current drugs for Black women, any time a Black woman gets chemo treatment, she’s doing a clinical trial on her own body.
- Clinical trials are free.
- Do it for your daughter and granddaughter.
When We Tri(al) is also rolling out messages around the idea, “What would the world look like without Black women?”
“I don’t want to scare people, but I want Black women to know what they are up against. I want them to advocate for themselves,” Fairley said.
She aims to do this by spreading awareness about breast cancer.
“There is data that says most Black women don’t know when they should get a mammogram, so I want Black women to stand in front of the mirror and look at their breasts every day and talk about it with their daughters… Talk about who had cancer in the family. And then say, ‘Clinical trials can save your life, and we’ll keep dying if we don’t [participate],’” said Fairley.
She wants Black families to talk about clinical trials before they are in need of one.
“Black families need to be talking about this in their households at the kitchen table, so if [they] do need one, they know where to go, what it means, and the fundamentals of trials,” Fairley said.
If you are looking for a clinical trial for triple-negative breast cancer or metastatic breast cancer, Fairley suggests visiting the Ciitizen website.