Through its Health Equity and Diversity in STEM Innovation Fund, Genentech (a subsidiary of Roche) is looking to elevate diversity and equity in healthcare as well as clinical research. The biotech company recently announced plans to invest more than $12m USD in various initiatives, each aimed at eradicating inequity and increasing access in the life sciences.
For the first part of this two-part series, Outsourcing-Pharma connected with a leader from Genentech to discuss the fund and the company’s approach to working toward more equitable clinical research. In this second part, we connected with Ricki Fairley, CEO and Founder of TOUCH, the Black Breast Cancer Alliance, a one-time grant recipient, about the importance of such work.
OSP: Could you please tell us a bit about your organization, including the work you’re focused on, any recent achievements/milestones you’d like to tell us about, etc.
RF: Touch, the Black Breast Cancer Alliance drives the collaborative efforts of patients, survivors, advocates, advocacy organizations, health care professionals, researchers, and pharmaceutical companies to work collectively, with accountability, towards the common goal of eradicating Black Breast Cancer. Though there are numerous breast cancer advocacy groups and stakeholders, there is a dire need to bring all patients, survivors, advocates, advocacy organizations, health care professionals, researchers, and pharmaceutical companies together to serve as allies to advance the science for Black Breast Cancer in an eco-system that is failing Black women.
This provides a blog about our recent launch of our When We Tri(al) Movement:
TOUCH, The Black Breast Cancer Alliance Launches a Groundbreaking New Movement to Advance the Science for Black Breast Cancer
TOUCH, The Black Breast Cancer Alliance, led by Thriver Ricki Fairley, launched When We Tri(al), a movement dedicated to empowering and educating Black women on the importance of clinical trial participation. The movement aims to change the devastating breast cancer mortality rates for Black women, who are 41% more likely to die from breast cancer than white women.
Black women are drastically underrepresented in clinical trials; only 3% of clinical trial participants leading to FDA approval of cancer drugs between 2008 and 2018 were Black. The consequences are dire: too many Black women are missing out on access to newly emerging and often life-extending treatments. Until more Black women are included in the research, they will continue to face worse breast cancer outcomes. When We Tri(al) is focused on the urgent need to end these disparities.
"Black Breast Cancer isn’t about a month, it’s about a movement. When We Tri(al) aspires not only to save Black lives but also educate and motivate clinical trial participation among our Black Breasties," says Ricki Fairley, CEO of Touch, the Black Breast Cancer Alliance. "The current drugs are not working hard enough for Black women. I’m on a mission to empower our community with the necessary knowledge to advocate for ourselves within a medical system that too often fails us. We must advance the science. Our When We Tri(al) launch will serve as a moment to hear firsthand how clinical trials can change the game for breast cancer and Black women."
The communication for the When We Tri(al) Movement was made with cultural humility, love, and hope. Designed by Black Breast Cancer patients and survivors, for Black Breast Cancer patients, the website provides basic education about clinical trials to arm Black women with the information they need to advocate for themselves in a medical community that often fails them.
Please visit whenwetrial.org to learn more.
OSP: Please tell me about your personal commitment to your organization and its mission.
RF: I am a 10-year survivor/thriver of Triple-Negative Breast Cancer. I was diagnosed with Stage 3A. After a double mastectomy, six rounds of chemo, and six weeks of radiation I was NED.
Almost exactly a year to the date of original diagnosis, a PET scan identified 5 spots on my chest wall. My oncologist told me I was metastatic, had two years to live, and to get my affairs in order. I did not accept that. I reached out to the Triple Negative Breast Cancer Foundation and they helped me find an oncologist who had experience with TNBC. She put me on two drugs that were experimental for TNBC and they saved my life.
I know that God left me here to this work as an advocate for Black women. It is my purpose, my personal mission, and my ministry. I fight like a girl every day so that my two daughters and three granddaughters won’t have to face this awful disease.
OSP: What are some of the greatest challenges you and your org have faced in recent years?
RF: Our organization was birthed out of the need to deal with health inequity. Black women have a 41% higher mortality rate than white women. Black women have a 39% higher recurrence rate than White women. Black women under 35 get breast cancer at twice the rate and die at three times the rate of white women. Black women like me, who have had breast cancer have a 71% higher relative risk of death than white women.
Our definition of health equity is that of the “golden rule”. HCPs need to treat patients with the level of care, compassion, and excellence that they would expect for themselves if they were patients. We have a long way to go. One of the major components of our When We Tri(al) movement is to teach Black women how to advocate for themselves and demand the care that we deserve.
We have been very blessed to garner the financial support of Genentech to do this work and are very grateful.
OSP: How did you come in contact with Genentech?
RF: I have worked with Genentech for about five or six years as an advocate for TNBC (as a Board member and Board Chair of the TNBC Foundation) as the team developed Tecentriq. I have the utmost respect for the Genentech team and truly treasure the work that we have done together over the years.
OSP: What has the funding from the Innovation Fund helped your organization accomplish?
RF: Genentech has graciously funded our research to better understand the emotional barriers to clinical trial participation by Black women. It was a major qualitative and quantitative study that provided the insights needed to build the communication platform for our When We Tri(al) Movement.
Genentech is also funding the movement launch that is enabling us to afford a national digital marketing outreach, a 10-market radio advertising effort, and community events in 10 markets where we are reaching Black women where they live, work, play, and pray. We are eternally grateful for this partnership.
OSP: Do you have anything to add?
RF: Since our Movement launch on January 26, 2022, we are seeing increases in our metrics with every bi-weekly report. To date, we have had 10k website visits, 322 website sign-ups, 265 clinical trial portal searches, a 15.7% social media conversion rate, and an overall 7.3% engagement rate. Our earned media outreach has secured 162 million media impressions.
We hope to change the game on advancing the science for Black Breast cancer by educating our community on clinical trial basics from a voice of trust, teaching self-advocacy, and giving Black women a platform for demanding a Black standard of care.
