The American Cancer Society has launched an ambitious, large-scale study focusing on a population that has long been overlooked despite high rates of cancer and cancer-related deaths: black women.
The initiative, called VOICES of Black Women, is believed to be the first long-term, population-based study of its size to zero specifically on the factors driving cancer prevalence and deaths among black women.
The researchers plan to enroll 100,000 cancer-free black women, ages 25 to 55, in Washington, DC and 20 states where most black American women live. Individuals will be surveyed twice a year about their behaviors, environmental exposures and life experiences and followed for 30 years. any cancers they may develop will be monitored.
Similar studies by the American Cancer Society in the past have yielded critical lessons about what causes cancer—for example, identifying smoking as a cause of lung cancer and linking red and processed meat consumption to an increased risk of colon cancer.
While some previous studies have included large numbers of black women, the research has not been able to “sharpen the specific drivers of cancer in this population,” said Dr. Alpa Patel, senior vice president of population science at Society-Principal Investigator of the VOICES study, along with Dr. Lauren McCullough.
“In general population studies, you tend to ask questions that will apply to the majority of the population,” he said. “So delving into lived experiences of discrimination, bias, systemic issues, environmental influences and cultural aspects of health-related behaviors, and how narratives around them are shaped in different populations—those types of unique aspects of understanding what contributes to cancer in a population were not asked.”
Women will be asked about their use of personal care products, for example, including chemical hair straighteners, which have been implicated in some cancers. Researchers will monitor environmental stressors and factors such as neighborhood walkability, crime, air pollution, access to healthy food, and proximity to liquor stores and establishments that sell cigarettes.
Black women have the highest death rates and lowest survival rates for many cancers of any race or ethnic group. Black men and women have higher rates of colon cancer than white Americans, for example.
Black women die from uterine cancer at twice the rate of white women, are twice as likely to be diagnosed with stomach cancer, and more than twice as likely to die from it. They are also 40 percent more likely to die from breast cancer.
Persistently high death rates among black breast cancer patients were one reason the US Preventive Services Task Force recently reported lowering the age for starting mammograms to 40 again from 50.
Racial differences in breast cancer survival are relatively new. Until the 1970s, there was no racial difference in breast cancer outcomes between black and white women, Dr. Patel said.
“We now know that there are more aggressive tumors, especially at younger ages in black women compared to white women, and we don’t fully understand why,” she said.
Recruitment for the study began late last year with a pilot launch in Atlanta and Hampton Roads, Va., and enrollment expanded to other states and Washington in May.
Eligible participants must identify as Black, be assigned female at birth or identify as female, have no history of cancer (other than common basal or squamous skin cancers), and be between the ages of 25 and 55.
No drugs, clinical trials, treatment or lifestyle changes are needed in the study.
Breana Berry, 30, who works in public health near Atlanta, signed up as soon as possible, as did her mother, Jacquelyn Berry, 53, who cares for a friend with breast cancer and lost her husband to cancer in pancreas three years ago when he was 53 years old.
“My husband had been complaining of stomach problems for two years and was misdiagnosed and misdiagnosed,” she said. He died shortly after the correct diagnosis, which was advanced pancreatic cancer.
“I’m interested in the whys,” he said. “Why are there such huge inequalities? This is not an overnight study, you have to follow people over a long period of time. It’s a huge commitment, but I’m in. I know our voices will make a difference — to my great-grandchildren.”
