Systemic Racism and MBC in Clinical Trials
When it comes to metastatic breast cancer, clinical trials are the way we find new drugs, better therapeutic targets, and, hopefully, more time. There are many issues with how clinical trials are designed, who they recruit and who is excluded, but one of the most difficult to confront at least here in the US has been the failure of the entire system to address how Black women and men with MBC are so much less likely than non-Black patients to be on a clinical trial.
Systemic racism has many tentacles and today’s Black advocates and their allies are forcing transparency and change when it comes to clinical trials. This episode of Our MBC Life puts the focus on what we know is happening, why it happens, and actions to break down barriers to the best possible care.
Co-hosts Sheila Pettiford, Martha Carlson, and Natalia Green, who also serves as OMBCL Executive Producer, took the Metastatic Breast Cancer Alliance BECOME project as the jumping off point. Led by advocate Stephanie Walker, BECOME found that only 36% of Black survey respondents received as much information about clinical trials as they wanted even though over 80% were likely to consider joining a trial. This failure to communicate is one of the first barriers that needs to be overcome, but Black women and men with MBC were also found to have significant concerns around access and trust that differed from non-Black survey respondents. Stephanie is also the lead of the Black Wo(Men) Speak Symposium, held the day prior to SABCS on December 5, which brings together Black-led advocacy organizations, with the MBCA, oncologists, industry, and nonprofits to address these issues head on. In this episode, Stephanie Walker talks about the BECOME findings and OMBCL uses her words to guide our interviews.
We also talk to Rev. Dr. Tawana Davis for the Black patient perspective on clinical trials and MBC. Rev. Dr. Davis was on an immunotherapy clinical trial for about 1 year, ending in 2018, following her initial treatment. Our last guest is Valarie Worthy, MSN, RN, a Patient Navigator at Duke Cancer Institute, co-founder of TOUCH, The Black Breast Cancer Alliance, and 23-year cancer survivor.
There is a lot of thought-provoking conversation in this episode. Make sure to follow the links below to learn more about our guests and their work.
Meet the Guests of the Episode
Stephanie Walker, RN
Stephanie Walker was diagnosed in July 2015 with de novo MBC. She is a registered nurse with close to 40 years of clinical practice and secondary teaching experience. Her experience has been pediatric and adult critical care working in level 1 trauma centers to critical access hospitals. The last 15 years of nursing was with End of Life/Hospice care. Only aware of MBC advocacy 3 years after diagnosis, she has pushed for rural equality, equity in breast cancer. She is a member of MBC Alliance (in which she is project lead on the BECOME initiative (Black Experience of Clinical Trial and Opportunities for Meaningful Engagement ), LBBC Helpline/HMV volunteer and SG Komen volunteer.
She is married and lives in Tarboro NC with husband John and rescue dog Rex, advocating for men and women in rural areas as my own for equal access to quality healthcare , treatment modalities, and resources keeps her busy .
Research and Clinical Trials are extremely important. I want researchers to reach out to men and women with MBC to put a human face on their work. Realize that we are dying to live a longer quality of life.
”I’m an open book so ask me.” I don’t want anyone to feel alone, isolated or defeated.
Reverend Tawana Davis, Ph.D.
Reverend Dr. Davis is the curator for Dr. TAD Enterprises; a racial-justice organization that uses Womanism as a love-based revolution that centers Black women to address anti-Black racism, disparities in breast cancer and Black women, and domestic violence advocacy. Rev. Dr. Davis is the Interim Executive Director and Co-Founder of Soul 2 Soul Sisters. Additionally, Rev. Dr. Davis is currently the Mobilizer for the national non-profit Carrie’s TOUCH, a breast cancer research, support, and policy organization that focuses on humanizing Black women and their experience with breast cancer. She is also an equity, anti-racism trainer for the Center for Equity and
Excellence. Reverend Dr. Davis is the daughter of the late Edward Eugene Davis Jr. and the late Rose Lee Davis. Born and raised in Harlem, New York she was educated in the public school system, raised in the African Methodist Episcopal Church, and began her life of service in the beautiful shadows of her mom and dad.
After attending St. John’s University, Tawana completed her last year of studies at State University of New York Empire State with a Bachelor of Science in Human Resources Management. Reverend Dr. Davis earned a certificate in Project Management from New York University and Human Resources (PHR) from Cornell University. Later, she received a Master of Divinity at Turner Theological Seminary at the Interdenominational Theological Center in Atlanta, GA. Rev Dr. Davis earned a Master of Arts in Leadership and Change and her Doctorate of Philosophy in Leadership ad Change at Antioch University Graduate School of Leadership and Change. Reverend Dr. Davis is a Womanist, thought provoker, speaker, preacher, and community leader. She is a breast cancer survivor and is in active treatment for metastatic breast cancer. She is an advocate and activist for racial justice, breast cancer awareness, and a certified domestic violence advocate. Reverend Dr. Davis is the Co-Founder of Soul 2 Soul Sisters, a Black Woman-led, faith-based, racial justice non-profit organization that centers Black lives and experiences. Established in 2015, Soul 2 Soul Sisters is leading and facilitating anti-racism work across the country through its signature program Facing Racism. Tawana is a contributor to the ground-breaking academic textbook “Race Work and Leadership: New Perspectives on the Black Experience.” Dr. Davis is also a contributor to Explore: Vocational Discovery in Ministry. She hosts a vodcast/podcast called #tuesdayswithtawna on Fb Live, various Podcast platforms, and YouTube. Tawana is featured as the moderator and strategic planner for the Telly award-winning Healing the Healers II 4-part series on Domestic Violence Awareness produced by Odyssey Impact and Transform Films. Tawana was a presenter of three workshops for the Conference on Crimes Against Women. Dr. Davis serves on the board of directors for the Institute of Racial Equity and Excellence and the Patient Co-Creation Council for Genentech, Inc.
Tawana is a proud mother of master level two educators, a grandmother, and most of all a Justice for all!
Social media links:
Facebook ~ @thedrtad
Instagram ~ @thedr.tad
LinkedIn ~ @ReverendTawanaDavis
TickTok ~ @thedr.tad
Valarie Worthy, MSN, RN
Valarie Worthy, a 23-year breast cancer survivor, has been a registered nurse for 40 years. Currently, she is a Patient Navigator manager at Duke Cancer Institute. In addition to her work at Duke, Valarie works in the community to raise awareness about breast cancer and clinical trials with emphasis on its impact in the African American community.
Valarie led a local chapter’s survivorship organizations of African American breast cancer survivors for 17 years. Currently, she is the co-founder of TOUCH, Black Breast Cancer Alliance, a nonprofit organization focused on breast cancer awareness and increasing clinical trial participation in African American breast cancer patients. Valarie is a recipient of numerous awards including the American Cancer Society’s Lane Adams Award that recognizes the unsung heroes of cancer care and is referred to as the “warm hand of service.”