Black Women's Health Study celebrates 25 years
It was 1995 and Black women in the United States were dying at higher rates of heart disease, stroke and cancer than the rest of the population. We just didn't know why. Only then did health care begin to take a closer look, through the wider lens of the Black Women's Health Study.
"This cartoon shows the state of medical research when I entered the field in the 1970s," said Boston University's Dr. Lynn Rosenberg, a co-founder of the BWHS, during a recent online conversation. "So as this woman says, 'Doctor, what's wrong with me?' He says, 'You're not a white male.'"
In fact, over most of history, medicine considered male and female bodies to work pretty much the same, except women could give birth and had periods of hysteria. Medical research focused on white men, and when it finally started to expand, white women were added.
"So as I and my colleagues were discussing what kind of study is needed, it became obvious to us that a study of Black women was needed," Rosenberg said.
So began the BWHS, the largest epidemiological study to focus on the health of Black women. Every two years for the last 25 years, 59,000 Black women age 21-69 from across the country have been sharing what's become a mountain of data.
"The scholarship that has emerged from this study has been critical for the way practitioners have gone on to practice and educate Black women," said City University of New York's Alicia Georges, a BWHS board member who's been involved since the beginning. "It's clearly stating what the issues are. Racism? No question. Stressors? No question. Zip codes? No question."
"Personally, it meant to me that we have a voice in the room," said the City of Buffalo's Ellen Grant. "Now we have an opportunity to look at differences, nuances, painting it with a broader paint brush, so to speak."
Grant is an Advisory Panel member, a former national co-chair and a participant for more than 20 years.
"My own example," she said. "I was a working woman in a professional role in a hospital. And with the everyday stress that women of color deal with, the little microaggressions we deal with day to day in trying to do our job — not being taken seriously, not having a voice in the room — all that stress possibly led to me having a premature birth."
Grant said her son is 6 feet 3 inches today, but weighed only 5 pounds at birth. That's 2 1/2 pounds less than average.
Low birthweight is actually highest for Black women in the U.S. (13.4%), nearly two times higher than white women (7.1%), according to the March of Dimes.
"I had to find a new doctor, because I wasn't getting the information I thought I should be getting," said Veronica McCullough.
Retired and living in Buffalo, McCullough has been a study participant all 25 years. She remembered uterine fibroids being her first "really bad" health condition — and a doctor who didn't make it easier.
"She was just, you know, kind of dismissive about it. And I thought, 'I guess people have fibroids and have all this bleeding. And I guess they should just not work, stay home and stay in bed and do nothing.' Because it was very debilitating," McCullough said. "She was like, 'Awe, no big deal.' At that point, they're not really listening to you."
McCullough later found the right doctor, had a couple of surgeries and actually felt well again, not just treated.
Most women will be diagnosed with fibroids during their life, but Black women are 2-3 times more likely to develop them at a younger age, have severe symptoms and be hospitalized for them, according to the Black Women's Health Imperative, which also cites the causal relationship with racism found by the BWHS.
The study has published hundreds of findings on a variety of conditions, but the largest focus has been on breast cancer.
"The currently available risk prediction models have been used in white women for over 20 years, but they don't work very well for predicting breast cancer in Black women," said co-founder Dr. Julie Palmer of Boston University.
Palmer said the models were developed with data from white women, and that didn't take into account the different patterns and risk factors for Black women.
"We recently received NIH funding to develop a new model using an approach that takes into account the different risk factors for the two major sub-types of breast cancer," she said. "One of these sub-types, which is called estrogen receptor negative, is twice as common in Black women, occurs at younger ages and it tends to be more aggressive."
Among the study's published reports are other unique health connections, including hair straighteners and cancer, church service and mortality, and air pollution and diabetes.
McCullough said she'll keep journaling and sharing her health experiences as long as the study continues.
"Because I have two daughters and I wanted to be able to pass on some information to them," she said. "When I asked my mother about different health issues, either she didn't know or she didn't remember. And sometimes they just weren't talked about. So I decided I needed to do better with that, passing the information along. Hopefully, it will make an impact, make a difference in women's lives."