Black women are disproportionately impacted by cancer — especially breast and cervical cancer. Now, Black women in Massachusetts can take part in a multi-state study, which is planning to cover at least the next 30 years of their lives.
The “VOICES of Black Women” is a study led by the American Cancer Society to investigate exactly why Black women die of certain cancers more than any other racial and ethnic group, and what factors in their lives could be the cause of the mortality.
“There’s so many women who could talk about experiences through, their doctors, through their lifestyles, that could help the future women,” said Nekia Clark, director of patient services and outreach at the Ellie Fund, a Needham-based nonprofit that works to support people diagnosed with breast cancer.
To register, Black women must be between the ages of 25 to 55 and never had cancer. They will be followed by researchers to see how Black women’s medical history, lifestyle, and encounters with racism impact their risks of the disease.
The goal is to enroll at least 100,000 women across 20 states and Washington, D.C. Once qualifications are met, women can participate by completing an online health and life history survey and updating health information twice a year for at least 30 years.
Breast cancer kills Black women at a 40% higher rate than white women, according to the National Cancer Institute. For cervical cancer, that number is 60% more likely, according to a report in the American Journal of Preventative Medicine.
“VOICES of Black Women represents a crucial step toward achieving health equity in a population that is long overdue,” said Dr. Alpa Patel, co-principal investigator of the study and senior vice president of population science at the American Cancer Society. “By centering Black women’s voices and experiences, we can dig deeper in uncovering the unique challenges and barriers contributing to cancer disparities and develop tailored interventions to mitigate them.”
Clark is also a breast cancer survivor and had her disease caught early. But she lost her mother to a resurgence of cancer in 2020. Clark said she tells countless Black women that it's important to advocate for themselves.
“If you're educated on your health, you're able to advocate for yourself to your doctor and know if that doctor is not listening to you, you can go to another doctor who will listen.”
Clark said she often hears that “it’s a wait and watch” approach for Black female patients. They go into some doctor's office's with symptoms of breast cancer, and they’re told to “just keep watching it.” The gaslighting can have catastrophic impacts, she said.
“It results in an early-stage cancer becoming a late-stage cancer where it's metastatic. And they have to continue treatment for the rest of their life and eventually they will die from the disease.”
Jani Raynor, 46, is a year into remission from breast cancer. She has several female and male friends in other states who felt like their doctors didn’t listen to their concerns about symptoms. While she didn’t have diagnoses issues, Raynor said she suffered from a lack of support to get preventive care in Massachusetts.
“I never felt like I was encouraged to make sure that I was getting my mammogram or that I was doing self-examinations,’’ she said. “I definitely do those because I have breast cancer history in my family.”
Local providers say the study is important, especially given the lack of focus on Black women historically in clinical trials.
“We know that a lot of the reasons why these rates [are higher] for Black women are related to systemic racism,” said Rachel Preiss, a women’s health nurse practitioner at The Dimock Center in Roxbury. “We know that it occurs on multiple levels, and we know that that leads to multiple avenues of missing breast cancer in patients.”
The Dimock Center, she said, is less involved with treatment, and more involved in preventive care. That means making sure women have mammograms, and ordering exams that could diagnose cancer early. Sometimes, that means being a patient’s second opinion.
“For cancer and everything else, I can't tell you the number of times that I've sat with a patient, and they told me that another provider just didn't listen to them,” Preiss said.
