On our path to eradicate Black Breast Cancer, TOUCH, The Black Breast Cancer Alliance is excited to partner with the Morehouse School of Medicine and 2for2 Boobs, and powered by Ciitizen to launch #BlackDataMatters.
Black Breast Cancer is a different and distinct disease that deserves special attention and focus from the breast cancer ecosystem. The physiology of Black women has not been a significant consideration in clinical trial research. The average participation by Black Women in breast cancer clinical trials overall is less than 3 percent. We will not be able to change the devastating mortality numbers unless we better understand the physiology of Black Women.
And, we cannot do that until we have more Black women participating in clinical research. With low participation rates in clinical trials, Black women are missing access to newly emerging and often life-extending treatments that are not otherwise available. Moreover, trial data and resulting treatment protocols do not sufficiently account for the unique factors of the biology of Black breast cancer. The bottom line is that the breast cancer ecosystem has been unsuccessfully trying to solve for this issue for years. The time is NOW to figure out what has been missing and address it head on.
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We are ecstatic about launching #BlackDataMatters, a program that puts patients in a position of power to directly change clinical research and the medical system that often fails black patients.
FREE TO PATIENTS
This initiative will make it easy for people to be in control of their health data by collecting, digitizing and organizing your medical records through the Ciitizen platform. Because when we are empowered with our health data, we can drive change to eliminate breast cancer health inequities and increase research that can help our community.
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Breast Cancer Warrior, Terrilynn Wade says, “People have no idea how important their records are. You don’t want to have to wait for your records down the line when you need them. To have them all in place is an amazing thing.” It’s easy and fast. Terri signed up for Ciitizen in less than 5 minutes with her 3-month-old granddaughter in her lap.
Breast Cancer Metathriver Chawnte’ Randall agrees, “We don’t have time to dilly dally with paperwork,” she said. “We need decisions fast and in a hurry! With all my records compiled in a Ciitizen account, that’s one less thing I have to worry about.”
Through #BlackDataMatters we are creating access to research opportunities for our community. When you have all your medical data in your Ciitizen profile, not only is your data secure, protected, and private, you are then empowered to choose if you want to contribute to life saving research. We’re democratizing precision medicine, providing access to life-changing research and clinical trials. RESEARCH SAVES LIVES.
Triple Negative Breast Cancer Thriver Sharon Rivera says, “Clinical trials are a way to make a difference for yourself and our community. Every step we’ve taken in the fight against cancer has come from these trials. We don’t have a cure, but these scientists are working to save our lives.”
We must overcome the huge barrier of mistrust based on the harmful scientific history of exploitation and racism (Tuskegee study, Henrietta Lacks) by providing tools that give Black women confidence that their data will be protected and safe.
Breast Cancer Metathriver Sheila McGlown says, “You need to understand our culture and the mistrust we have for the medical system as a whole. After you take the time to understand that, only then can you break through to talk about the importance of health data.”
Dr. James Lillard, an immune biologist, leading the Morehouse School of Medicine Total Cancer Care Program, has partnered with #BlackDataMatters to provide instant and easy access to research for patients. As a trusted voice in the Black community, he believes the partnership with Morehouse, TouchBBCA, 2for2Boobs and Ciitizen would be transformative for Black patients.
“As we engage these Black breast cancer patients, they’ll also have the opportunity to sign up for our Total Cancer Care study where we will provide patients with a clinical sequencing panel and genetic testing free of charge," Dr. Lillard explains. "With that information, clinical treatment decisions can be made based on the mutations that are driving their cancer.”
Talullah Anderson, three time Breast Cancer Thriver and founder of 2for2 Boobs, a grassroots breast cancer foundation in metro DC that focuses on the importance of early detection, says “I am excited to be part of this national movement that provides an invaluable service to patients and gives them access to life-saving research.
It’s time to stand up, take control of our health, and let the medical industry know that #blackdatamatters!
Get more information and sign up at www.ourblackdatamatters.org.
About TOUCH, The Black Breast Cancer Alliance
TOUCHBBCA was founded by survivors/thrivers Ricki Fairley and Valarie Clark Worthy who are passionate about doing the work to thoroughly understand Black Breast Cancer and lead the ecosystem toward eradicating it. As a Stage 3A Triple Negative Breast Cancer Survivor/Thriver, Ricki’s personal purpose, passion, mission, ministry and blessing is to raise awareness, fundraise for a cure for breast cancer and support and coach what she calls her “Breasties” through their breast cancer experience. She is a seasoned marketer who has focused her vast branding experience and strategic acumen to the breast cancer fight. Valarie Clark Worthy, a registered nurse with a master’s degree in Leadership: Community Health Systems, has been a nurse for over 38 years. Patient Navigation, public, community and home infusion nursing summarizes her nursing career. Valarie, a 21-year breast cancer survivor understands the unique needs of cancer patients and their families. She works collaboratively with cancer centers around the nation to address the needs of African American women with breast cancer. TOUCH, The Black Breast Cancer Alliance is a 501c3 organization. Find us on Facebook, Instagram and Twitter @TOUCHbbca and online at www.touchbbca.org.
About Ciitizen
Our mission is to empower seven billion citizens across the planet with all of their health data. When you control your data, you have more options. For your own care, and to advance research for others.
