TOUCH, The Black Breast Cancer Alliance, a Genentech Health Equity Innovation Fund grantee, launched the groundbreaking When We Tri(al) initiative to disrupt decades of failed efforts to overcome Black women’s justifiable mistrust of clinical research. Despite being 41% more likely to die of breast cancer than their white counterparts1, Black women remain underrepresented in clinical trials.
To change this, TOUCH has activated a joyful, energized community of Black women with breast cancer to advocate for themselves and each other by ensuring they understand the benefits of clinical research and their fundamental rights as patients. Through their efforts, TOUCH has enrolled 16,500 people in clinical trial portals to learn more about new research opportunities. TOUCH also launched its own trial portal in December 2023 to help match patients to trials and better measure the impact of their work.
The success of this work reflects TOUCH’s refusal to make assumptions. Instead, they took a data-driven approach and actually listened to Black women with breast cancer, their families and caregivers to understand their experiences and perceptions of clinical research. TOUCH then partnered with experts in marketing and end-user experience to tailor their movement to the needs of Black women. They have published video testimonials, ensured explanations of clinical trials are direct and easy-to-understand, and hosted 100+ engaging community events in settings where Black women already come together, like churches and hair shows.
People had the wrong impression of what a clinical trial is. When we break it down into words they can spell from the voice of a Breastie, they get it and they want to enroll.
- Ricki Fairley, co-founder & CEO of TOUCH, The Black Breast Cancer Alliance and Genentech Innovation Fund grantee
The result has been a community movement to drive collective power among Black women to take their health into their own hands. Additionally, the Innovation Fund has given TOUCH the time and space to raise nearly $2 million in additional funding, secure seats on influential clinical trial working groups and advise major pharmaceutical companies on effective clinical trial communications.
We asked TOUCH co-founder, CEO and breast cancer survivor Ricki Fairley to share her experience of leading this paradigm-shifting movement to eradicate Black breast cancer and support patients, whom she calls her “Breasties,” through their cancer experience.
What kind of impact is your work having so far?
We’re changing minds and changing behavior. People had the wrong impression of what a clinical trial is. When we break it down into words they can spell from the voice of a Breastie, they get it and they want to enroll. People thought trials were a last resort, but now we’re getting people who are early stage who want to join.
What are some of the barriers to enrolling Black women in cancer studies?
The biggest barriers are, number one, they aren’t asked to participate and number two, there is fear of getting a sugar pill – it’s fear of the unknown.
Looking ahead, what excites you most?
I can’t even begin to tell you how grateful I am – Genentech made my dream come to life and it’s working. We can’t stop now. It’s like a snowball – the more people we get involved, the more people we’ll save.