Changing Cancer Clinical Trials Through Collaboration

It isn’t enough to say that cancer clinical trials need more diversity and patient support; we must take action.

For me, the end of the year always brings reflections. This is most true since I was diagnosed with cancer. I am more aware of how I spend my time, focusing on things that matter to me and hopefully to others, while also allowing me space to grow on my own and just be myself.

Since I’ve spent a good portion of every week either in meetings or private conversations about an upcoming cancer advocacy event, this has been on my mind as I look toward 2023.This event, the Black Wo(Men) Speak Symposium, happening on Dec. 5 in San Antonio (register to attend in-person or virtually at black-women-speak.org), is important to me as a person, an advocate and as a friend to Black women who’ve been diagnosed with breast cancer.

I feel lucky to have been at the virtual planning table as this event unfolded, watching the larger vision of advocate Stephanie Walker, who led the Metastatic Breast Cancer Alliance’s BECOME (Black Engagement in Clinical Trials and Opportunities for Meaningful Engagement) project, take shape and come to fruition.

Cancer advocacy has taught me that even though we may be on a solitary and sometimes terribly lonely path with cancer, there are also people who can walk beside us, join us briefly or for the long-haul. I think advocacy is so much stronger when people join together and the Black Wo(Men) Speak Symposium is, for me a landmark effort showcasing united purpose.

Led by Stephanie and the MBCA, it brings together some of the most influential women-led and, importantly, Black women-led, organizations in breast cancer advocacy: Ricki Fairley of TOUCH, the Black Breast Cancer Alliance; Rev. Dr. Tawana Davis and founder Rev. Dr. Tammie Denyse of Carrie’s TOUCH; Marissa Thomas of For The Breast of Us; Jasmine Souers of The Missing Pink Breast Cancer Alliance; and a planning committee comprised of still more leading advocates, nonprofit organizations, and industry.

Since I’ve been involved in cancer advocacy in one way or another for about six years, I know firsthand how challenging it can be to get things done and to get them done in a way that effects positive change. This group, where I am the outlier as a white woman with MBC, is intensely passionate and it has been an incredible experience to watch as the people most impacted—the patients—return always and with resolve to the mission of increasing Black representation in clinical trials.

Discussion about how to increase clinical trial diversity are becoming more widespread, pushed by patients themselves, but this event isn’t just “about increasing diversity.” It is focused on showing doctors, pharmaceutical insiders and clinical trial stakeholders the concrete actions they can take right now.

Statistics that show Black women with breast cancer are simultaneously less likely to be diagnosed and more likely (41% more likely) to die of the disease. Alongside that dire statistic is the fact that Black people are disproportionally not represented in clinical trials, so important aspects like treatment effectiveness and side effects are also not represented.

I care about this effort because I care about people, and I am looking forward to hearing from the Symposium speakers, who include the people named above plus Tigerlily’s Maimah Karmo, Dr. “Lola” Fayanju as Keynote Speaker and Dr. Monique Gary as symposium emcee. Attendees will hear from navigators, pharmaceutical companies involved in bettering inclusion, men and women with MBC who’ve been on clinical trials, caretakersand more.

It is striking to me that all the stakeholders in cancer care and clinical trials are stepping into this much needed conversation. It’s the beginning of better clinical trials and I hope we are all here for it.

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