It’s no secret that Black women have a higher risk of developing and dying from breast cancer compared to other racial groups.
Black women, be it their mothers, grandmothers, aunties, wives, daughters, co-workers, siblings, etc., have a 20% higher risk of developing breast cancer than their white counterparts, according to the American Cancer Society (ACS).
And once contracted, the statistics get worse. Black women are twice as likely to die from breast cancer as white women.
The answer to the obvious question – why – eludes the health research community because Black women have rarely been included in cancer studies, much less been the center of researchers’ attention.
That is, until now.
A new study seeks to answer that question and more in hopes of saving lives. ACS’s study, Voice of Black Women, Voices for short, seeks to sign up 100,000 Black women ages 25-55 who have never been diagnosed with cancer to gain the knowledge necessary to change these unacceptable outcomes.
Voices, a national initiative, aims to discover what factors are contributing to more deaths from cancer among Black women than other women.
How Voices works
Shameka Dukes, ACS board member, shared how the study works.
“The population or sample size is so important because past research often lacked sufficient representation of Black women, and that is leading to a gap in understanding our health outcomes.”
– Shameka Dukes
“Participants essentially complete an online health and life survey at enrollment, updating the information twice a year,” said Dukes, who is also a Voices ambassador. “So, not only does [Voices] help identify and address cancer disparities among Black women, but it improves the overall health of Black women for generations to come.”
Dukes said the study aims to fully understand “multilevel drivers” of cancers in the population of Black women.
“It is truly exploring emerging research areas, including social support, discrimination, racial disparity, and even generational wealth,” added Dukes.
Uniqueness, importance of Voices
The focus of Voices alone is groundbreaking: 100,000 Black women ages 25 to 55 who have never been diagnosed with any cancer, with the exception of some skin cancers, and who reside in the US.
But the reasoning behind the focus is even more critical.
“The population or sample size is so important because past research often lacked sufficient representation of Black women, and that is leading to a gap in understanding our health outcomes,” said Dukes. “A large sample size provides statistical power in identifying patterns and correlations of health data that might be missed in smaller studies.”
Impact of absence
According to multiple sources, Black women have been relatively absent from cancer research studies due to a combination of systemic barriers, historical mistrust of the medical establishment, and failures in the research recruitment process.
This omission—purposeful or not, structural or by happenstance—continues to have dire consequences on Black women and those who love them.
“For a number of reasons, Blacks have been underrepresented in studies. And with that, the outcomes specifically to cancer have not been tailored, if you will, to impact positively Black women in the way that it has in others,” said Dukes. “Despite the advances that have happened in cancer research, Black women continue to have the highest death rates and the shortest survival rates for most cancers compared to any other racial or ethnic group in the US.”
Dukes noted that Black women under the age of 40 have a higher breast cancer rate than any other group.
“With statistics like that, we need research that’s geared to help with the outcomes of our treatment and prevention measures,” she added.
Mary Tillman-Young, strategic director of Diversity, Equity, & Inclusion for ACS’s South Region, acknowledges the critical need to include Black women in cancer research.
“At the American Cancer Society, equity in cancer care for all is at the heart of our mission. We prioritize work that helps ensure everyone has an opportunity to prevent, detect, treat, and survive cancer,” said Tillman-Young. “It’s with this vision in mind that we launched a groundbreaking population cohort study – Voices of Black Women – underscoring our commitment to better understand how this community is impacted by cancer disparities.”
Outcome goals: Legacy
Dukes says Voices aims to gather insights that can be generalized to a broader population of Black women across the US, accounting for diverse experiences and backgrounds.
“The data collected will essentially help in effective interventions, treatments, and preventative measures specifically tailored towards the needs of Black women. Again, with the numbers being what they are, that tailoring is going to be paramount,” added Dukes, who describes Voices as a “legacy project.”
“It will continue to have data input over the years to help impact the numbers, and the overall goal being to improve the health outcomes of Black women for generations to come,” she added.
Voices isn’t just theoretical for Dukes, it’s personal. She’s had multiple family members, some older, some younger, who have been impacted specifically by breast cancer.
“While we have had some heavy losses over time, we’ve had some survivals. And with that, it often makes me think about my nieces, my cousins, those family members of future generations,” said an emotional Dukes. “So, while it may not impact those of us today who may end up with a diagnosis, I think about those who are to come after us.”
“Creating space for Black women to share their stories will help us better understand how their unique experiences can shape a path toward eliminating barriers so everyone has the same opportunity to be healthy and cancer-free,” stated Tillman-Young.
How to participate
To sign up for the study, get more information, or to support participants and spread the news about Voices as a Voices ambassador, visit voices.cancer.org, call 800-494-4113, or email thevoices@cancer.org.Tillman-Young added, “The time to use your voice is now. Visit voices.cancer.org today. It only takes 5 minutes to check your eligibility and begin registering for the study. If you are not eligible, text the study website to three friends who may be eligible.”
