Many public narratives still portray breast cancer as a disease of older white women. They shape screening guidelines, design clinical trials, set treatment protocols, and decide where cancer centers go. But Black women face a different reality. In our communities, women receive diagnoses at younger ages, experience higher mortality rates, and face triple negative breast cancer (TNBC), a subtype with no approved therapies to prevent recurrence.
We spoke with Ricki Fairley, CEO and Co-Founder of TOUCH, The Black Breast Cancer Alliance, and Sue Weldon, Founder and CEO of Unite for HER, about what it means to build care that reflects the truth of Black women’s experiences and what it takes to change the system.
How Breast Cancer Impacts Us Is More Than Just Data Points
“The devastating mortality numbers associated with being Black and diagnosed with breast cancer are so much more than just data points, they validate a wholly different lived experience and disease,” said Ricki Fairley.
“Most people, when they picture breast cancer, picture an older white woman. And everything about breast cancer care has oriented around that perceived ‘typical’ patient. Black women have been largely left out of the conversation.”
Fairley defines Black Breast Cancer as “the constellation of exposures, experiences, and lack of science for Black women diagnosed with breast cancer that causes Black women to face disproportionately worse breast cancer outcomes.”
Triple Negative Breast Cancer (TNBC) is a fast-growing subtype of breast cancer that doesn’t respond to hormone therapies or targeted treatments. It’s much harder to treat, more likely to return, and disproportionately affects Black women, especially those under 40.
“We now have data that validates that the biology of a Black TNBC breast cancer cell looks significantly different from a white breast cancer cell,” Weldon said. “The treatments that we currently have available were based on clinical trials where the patient participation was not commensurate with the burden of disease.”
In other words, Black women are underrepresented in the very trials that shape today’s treatments, despite facing the highest risks.
TOUCH launched BlackTNBCSanctuary.org in 2024, a TNBC resource created by the community, for the community. Unite for HER expanded access to its Wellness Passport Program, offering integrative therapies, nutrition support, and community care.
“This wrap-around approach ensures that, even in the face of limited medical options, the women we serve are seen, supported, and given the care they need to truly live well,” Weldon said.
Unite for HER’s model is built around restoring quality of life. Patients receive therapies that ease side effects, reduce stress, and help them reclaim joy in their days. The program also fosters community, offering a space where women feel seen and supported.
The Care for HER Model is Designed Especially for Us
Care for HER is a new delivery model for Black breast cancer care. Co-created by TOUCH and Unite for Her, it fuses two proven systems. Patients receive round-the clock nurse navigation rooted in cultural experience, along with integrative therapies such as acupuncture, nutrition counseling, and wellness support. These services are now offered as one unified program, available nationwide and free of charge.
“We asked, what if we combined resources?” said Weldon. “We created a comprehensive approach to help Black women better access and adhere to their treatments. At the same time, we knew it was vital to amplify education about the stark health disparities, most notably that Black women die from breast cancer at a 40% higher rate than white women.”
Why Black Nurse Navigators Are Critical
In 1990, Dr. Harold Freeman created patient navigation to reduce delays in care for Black breast cancer patients. TOUCH Co-Founder Valarie Worthy, a longtime nurse and survivor, trained under Freeman.
“You have to have walked this path, both culturally and medically, to truly understand what it feels like,” said Fairley. “For patients, this is an unparalleled resource, to be understood, to have a trusted expert in their corner, and to see someone who has survived this disease.”
Today, Black women still receive later diagnoses and face a 40 percent higher mortality rate than white women. Most have never encountered a nurse navigator, and even fewer have access to one who shares their lived experience. TOUCH’s program fills that gap with culturally grounded guidance and 24/7 support, because cancer doesn’t care what time it is.
Spotting Access Barriers
The barriers to timely, equitable breast cancer care are layered. Obstacles such as dismissal by doctors at young ages, earned medical mistrust, and the inability to take time off work, among others, are major roadblocks. “There are too many barriers blocking access to care for Black patients to count,” said Fairley.
“Black women under age 35 get breast cancer at twice the rate of white women and die at three times the rate. The screening guideline of age 40 is too late for us.”
Clinical trial participation stays low because Black patients are rarely invited. When they are, it’s often during a crisis, like right after a diagnosis. Some women fear they’ll be denied real treatment. In clinical trials, a sugar pill refers to a placebo, a harmless fake treatment used for comparison. “Many of the Black Blessties who participated in our research mistakenly thought they were going to get a sugar pill and die,” Fairley said.
TOUCH uses the term Blesstie to describe a Black woman diagnosed with breast cancer. It’s a term that honors survival, sisterhood, and support.
Building Impact and Equity
“This growth reflects the importance of forming meaningful referral partnerships,” said Weldon. “We work with hospitals, cancer centers, and community organizations that share our mission. When these partnerships come together, the impact is profound. The metrics clearly affirm the value of this approach in advancing equitable care.”
That impact requires sustained investment. “At Unite for HER, we cannot keep up with the growing demand for our program without it,” Weldon said. “Each woman we serve receives $2,000 in integrative therapies and services. We’re proud to offer these resources. We have to raise the full amount every year.” TOUCH’s 24/7 navigation also depends on funding. “We wish we could offer it to everyone,” Fairley said.
“No woman should have to search for these resources or worry about how to afford them. They should be seamlessly built into every treatment plan,” Weldon said. Fairley added, “Until clinical trials reflect the burden of disease, we won’t get drugs that truly treat Black Breast Cancer.”
The vision is clear. Weldon said, “A future without Black breast cancer disparities is one where no woman feels unseen, unheard or dismissed.” She added, “True equality would be transformative.” Fairley shares that hope. “We don’t want anyone to die of breast cancer. But we do want to close the survival gap for Black women.”
This is where equity really begins.
Resources:
Touch BBCA
Unite for HER | Breast Cancer and Ovarian Cancer Support & Services
Home Page – Black TNBC Sanctuary
Your Wellness Passport | Unite For HER: Helping to Empower and Restore Breast and Ovarian Cancer Patients Nationwide
Care for HER | Unite For HER: Helping to Empower and Restore Breast and Ovarian Cancer Patients Nationwide
Blesstie Love – Touch BBCA
