Study of 100K Black women launches to figure out why more Black women are getting cancer

(NEW YORK) — Jacque Berry and her daughter, Breanna Berry, are Black women who say they have been surrounded by cancer all their lives.

“My great-grandmother had breast cancer,” Breanna Berry, 30, told ABC News’ Good Morning America. “I remember when I was like 10 and she’d say, ‘Sweetie, go get me some tissue to stuff in my bra.’ I didn’t understand then, but she had one breast.”

Years later, Breanna Berry said she watched as a friend, also a Black woman, was diagnosed with breast cancer at age 28, and as her father died after being diagnosed with stage 4 pancreatic cancer, a diagnosis she said took over one year as his symptoms were misdiagnosed.

Jacque Berry not only watched her grandmother and husband battle cancer, but she is currently a caregiver to a close friend with breast cancer and has another friend who is battling the same disease.

Now, the mother and daughter, who both live in Atlanta, are part of the effort to help save the lives of Black women and future generations.

The Berrys are some of the first participants in VOICES of Black Women, a study launched May 7, by the American Cancer Society that aims to figure out why Black women have increasingly high rates of cancer.

“I want to know why this is happening,” Breanna Berry said of her motivation to join the study, which is currently accepting participants.

“I have a granddaughter, so knowing that my voice was heard to help her generation is very huge to me,” Jacque Berry added.

VOICES of Black Women is described by the ACS as the largest-ever study of cancer risk and outcomes in Black women in the United States. The study will collect the data of 100,000 Black women ages 25 to 55 over a period of 30 years, looking at everything from their medical history to their income, environment, lifestyle and more, according to Dr. Alpa Patel, senior vice president of population science at the ACS.

“We will really build a relationship and go on a journey with these women over the next several decades, learning about their lived experiences and collecting information along the way from participants,” Patel told GMA. “And we use all of that information then to understand what is related to [the] risk of developing or dying from cancer and other health outcomes.”

Patel said current cancer data shows the need for the study. According to data from the ACS, Black women are more likely than other women to die of cancer regardless of the stage of cancer when diagnosed, and before the age of 50, Black women are twice as likely to die of a breast cancer diagnosis than white women.

“It’s an unequal burden, and it’s more pronounced at younger ages,” Patel said. “That was part of our motivation to set our enrollment age range at a younger age range of 25 to 55.”

Among all races and genders, Black people have the highest death rate from cancer, according to the U.S. Centers for Disease Control and Prevention.

When it comes to Black women, they are more likely than white women to be diagnosed with breast, lung, and colorectal cancers at a late stage, according to the CDC.

Last year, a study released in the Journal of the American Medical Association found that Black women had the same risk of dying from breast cancer if they were screened starting at age 42 as the general population had with screenings starting at the recommended age of 50.

And Black women are now being told more about the cancer risks associated with the beauty products they may use, specifically hair straighteners. Late last year, the U.S. Food and Drug Administration said it was considering issuing a proposed rule to ban hair straighteners with formaldehyde, a known carcinogen which has been found to cause an increased risk of endometrial cancers when used in chemical hair straighteners, often marketed to Black women.

Other products — including perms, hair relaxers, lotions and gels — geared towards Black women have been found to raise the risk of diabetes, obesity, cardiovascular disease and other health risks.

Patel said many of the questions about Black women’s health remain unanswered because, for decades, they have not been the primary focus of studies, both because of their race and their sex.

“Most studies, while they have been inclusive of Black women, there has been an underrepresentation of Black and brown individuals,” she said. “Unfortunately, what that’s meant is a lot of what we’ve learned has been built off of studies of predominantly white individuals. We know a lot, but we don’t know whether the same holds true in different populations.”

Patel said inequitable access to high-quality medical care is one contributor to Black women’s health outcomes, but it’s not the only one.

Participants in the VOICES of Black Women study, according to Patel, will share information about their daily personal lives so that researchers can look into the roles that other factors like diet, income, stress, mental health, social support and more play in health risks for Black women.

She said the study — which is led by an all-Black female scientific advisory board — was built and named intentionally with the hope of giving voice to Black women.

“What we hope to accomplish through the study is to really give an opportunity for 100,000 Black women to allow their voice to be heard, to change what cancer means for their daughters and their granddaughters,” Patel said. “This is a legacy gift. What I really hope is that women will choose to participate in honor of their daughters and their granddaughters and their nieces and the generations to come.”