By Deborah Bailey
AFRO Contributing Editor
dbailey@afro.com
The American Cancer Society (ACS) is searching for participants to join VOICES of Black Women (VOICES), the largest contemporary cancer study done with Black women in history.
The medical community is in search of answers to questions about how the life experiences and every day environment of Black women leads to stubbornly higher rates of chronic disease. As a result, ACS established VOICES to engage 100,000 Black women willing to help researchers understand cancer risks and outcomes in their community.
“This kind of cancer study with a large cohort of Black women is a first,” said Lauren McCullough, PhD., the ACS visiting scientific director and co-principal investigator of the VOICES study.
“This is a behavioral study,” McCullough emphasized. “Women who enroll in the study will only be required to complete two surveys each year. No needles, blood donations, medical tests or lifestyle changes are required,” McCullough stated. We need to learn about the lived experiences of Black women,” said McLauren.
Black women are dying from cancer at the highest rates of all racial and ethnic groups and have the shortest survival rates, according to data from the ACS. Despite breakthroughs in cancer treatment that have resulted in a major reduction in deaths from cancer since 1991, Black women have not benefitted equitably.
“We are still less likely to be diagnosed with leading cancers and our death rate for breast cancer is twice the rate it is for White women,” said Rev. Madeline Long, a breast cancer survivor and ambassador for the VOICES study. Long, her mother and aunt were all diagnosed with cancer on the same day, but are living, thriving advocates for Black women’s health.
Like many long-term cancer survivors, Long is refreshingly candid and passionate about the potential as well as the challenge of engaging 100,000 Black women for the VOICES study.
“We’ve done the first wave of major recruitment but still have a way to go,” Long said. The study has currently enrolled a little more than 2,700 women. She admits that Black women haven’t been beating down the doors to join the Voices study yet. But she is hopeful that continued recruitment and the ACS’s capacity to engage non-traditional approaches to connect with Black women will attract more participants to the long-term study.
Long mentioned that the study can benefit from a deeper understanding of the ways Black women want their voices to be heard. Because the study involves a 30-year obligation, Long emphasized the need to take a deeper look at why Black women would remain connected with a long-term project.
“It would be wonderful if Black women who volunteer for the study are able to connect with other Black women who care about Black women’s health,” Long said. “And maybe some women might join the study if there were opportunities to support them in monitoring their own health,” Long added.
Long touches on a major concern – recruitment of Black Americans for health studies. Black people are woefully under-represented in behavioral studies, according to the National Institute of Health’s National Cancer Institute. Studies conducted by the NCI report a Black participation rate of 5-7 percent in cancer research studies, while the percentage of Black people in the general population is closer to 14 percent.
VOICES of Black Women hopes to recruit more than 4500 Black women across the DC-Maryland area. Recruitment for the study is also ongoing in Alabama, California, Florida, Georgia, Illinois, Louisiana, Massachusetts, Michigan, Mississippi, Missouri, New Jersey, New York, North Carolina, Ohio, Pennsylvania, South Carolina, Tennessee, Texas and Virginia. To learn more about the study and how to participate, please visit the website, https://voices.cancer.org/.
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