Despite major improvements in cancer prevention and treatment over the past few decades, a stark reality remains: Black women have the lowest survival rate of any racial or ethnic group in the U.S. for most cancers.
The disparity is particularly stark for breast cancer which kills Black women at a 40% higher rate than white women. Black women are also about 60% more likely than white women to die of cervical cancer and more than twice as likely to die of stomach cancer.
To better understand these racial differences and ultimately remove barriers and improve outcomes for Black women, The American Cancer Society is launching a landmark study called VOICES of Black Women.
The VOICES of Black Women study hopes to recruit at least 100,000 Black women from 20 states including Georgia between the ages of 25 and 55 — and follow them for 30 years. The large-scale study is concentrating on these areas because that is where 90% of the U.S. Black women between these ages live.
Credit: American Cancer Society
Credit: American Cancer Society
“My immediate hope is that in joining this study, Black women feel that there are people out there who see them and are fighting for them and they want better outcomes for them and their family and their future daughters, grandaughters etc.,” said Dr. Lauren McCullough, an Atlanta resident and one of the lead researchers of the ACS study.
The study will look at medical history and information about the women’s daily lives so researchers can better understand how many factors — including diet, income, physical activity, stress levels and experiences of racism and discrimination ― may affect the risk of developing or dying of cancer.
The study will look at where people live and how poor air quality and heavy metals in the soil can impact cancer progression.
Also importantly, McCullough said access to health care doesn’t necessarily mean a Black woman will get the quality health care they need.
Credit: American Cancer Society
Credit: American Cancer Society
“I engage with breast cancer survivors on a consistent basis and some of the stories I hear blow people’s minds,” said McCullough who is also a researcher with the cancer prevention and control program at Winship Cancer Institute of Emory University.
She said a young women in her late 20s with a lump went to her doctor who dismissed it as nothing to worry about. She kept pushing for more tests until finally, after bleeding from her nipple, she was taken seriously, and diagnosed with stage 3 cancer.
“From a scientific end, we want to have the scientific evidence that systemic racism is real and there are places where we need interventions. We need environmental interventions. We need overhauls. We need social interventions,” said McCullough. “And from a clinical perspective to say, well this treatment is not working. We need to be able to say why certain treatments don’t work. What are the things we need to be looking for? What are the alternatives for these women?”
Enrolled participants will fill out two surveys a year delivered via a secure online portal. No medication, clinical testing, treatment, or lifestyle changes are part of the study, according to ACS. The women enrolling in the study must be cancer-free.
More information on joining the study is on the website.
Past population studies from ACS, which has included about 2.5 million research participants over the years have contributed to groundbreaking discoveries and have transformed our understanding of cancer including research linking cigarette smoking to lung cancer and more recent research linking a high consumption of red and processed meat to a higher risk of colon cancer.
Black women have long been underrepresented in cancer research. Black patients — men and women — account for only 5% of clinical trial participants in the U.S.
Credit: American Cancer Society
Credit: American Cancer Society
McCullough said the reasons for the low numbers include medical mistrust and not being recruited to participate.
“So often times when we get the results we have to always ask is, is this relevant to this particular demographic? Are there things that we haven’t taken into account that may uniquely affect Black women? To have a study that is focused on Black women will help us make significant advancements in the understanding the health of Black women,” she said.
This massive study hits close to home for Atlanta attorney Imani Monica McCullough, who is of no relation to Dr. McCullough.
She knew something was off in her body.
She saw doctor after doctor, at least four in all, hoping for an answer.
Each time, she was told that nothing was wrong. She even paid for an MRI out of pocket because a doctor didn’t think she needed one.
One time she happened to see her chart and a doctor had described her as “hyper-vigilant.”
“I don’t know if that was meant to be a positive or not,” she said. “I kept going because they kept turning me away.”
Eventually, two years ago, McCollough, 52, was diagnosed with follicular non-Hodgkin’s lymphoma. Doctors have not recommended treatment and are just monitoring her, which is common with this diagnosis, she said.
“It was a long road,” said McCollough, who thinks one of the reasons she had to push so hard to be heard was that she was a Black woman. “I know the healthcare industry is taxed, doctors are overloaded and guidelines have to be followed, but sometimes I didn’t feel that I was seen and heard in the same way,” as others. And even then, because her chart showed she was an attorney, she thinks she may have been heard more than other Black women, who don’t have similar occupations, “sadly.”
“Sometimes there is a disparity,” she said. She thinks studies like the current one can help address why Black women have a higher mortality rate for certain types of cancer.
She’s also thinking about younger members of her family. “This research can benefit younger people to understand the risks and do all we can to prevent and change the trajectory of the disease.”
