JACKSONVILLE, Fla. — Early detection can help prevent the spread of cancer. But for Black women, the numbers are grim.
Black women are less likely to be diagnosed, and more likely to die from the disease. Experts say multiple factors contribute to deadly outcomes for Black women including the quality of health care they receive.
First Coast News is pulling back the curtain, speaking with the lead researchers of a landmark study underway by the American Cancer Society that aims to improve the health of Black women for generations to come.
In Abliss Styling Studios, a Jacksonville hair salon, four Black women share their reasons why they've decided to participate in the VOICES of Black Women study.
"The way we grow up, our culture, we are not exposed to a lot of vegetables, especially I think green leafy vegetables, besides collards greens right," Gwenetta Patterson said as the group of women chuckled and shook their heads.
Patterson, along with her daughter, Jasmine Nicole Patterson, Tamara Sorrye and Cynthia Meadows gathered for a candid conversation concerning the deadly outcomes for Black women who battle cancer.
"I've had maybe about three clients that have passed from cancer within the last 10 years," Meadows, the owner of Abliss said. "All you can do is just cry. Like how could I have been a part of a solution that helps to save her?"
Meadows said she recently signed up for the VOICES study to do her part and help save lives.
At its helm are lead researchers, Alpa Patel and Lauren McCullough.
"There are certain things that we definitely know like health care access is obviously important, and the Black population generally has poor access because of things like where they live, transportation, insurance, etc.," McCullough said. "We also know that they are diagnosed with more aggressive types of disease which are going to lead to poorer outcomes, naturally. That's still something as a research community we are trying to better understand."
"Recently I went to the ER and I was feeling pain and because I was feeling pain, I was a little anxious and so it felt like everyone that came in before the doctor was just chalking it up to an anxiety attack, but I really was in pain and there was something wrong," Jasmine Patterson said. "The doctor listened, but everyone else didn't. And that wasn't the first time that has happened."
"There's a ton of data that shows Black women are often dismissed in health care settings, that their pain is often ignored," McCullough said. "Being able to provide the evidence that exists and being able to provide ways and interventions to help mitigate that in our health care system is one of the goals of this study."
Patel and McCullough explain disparities in health outcomes are not limited to health care access.
"There are some small studies that we know that are suggesting certain types of personal care products, chemical hair straighteners is one example, may put you at higher risk for certain types of cancer but when you think about the way science and evidence is built you need to have really robust data and evidence, to really be able to affect change and we don't have that yet," Patel said. "And that goes back to under representation and lack of representation in these types of large population studies. In a typical study where the population is for example only 5% Black, you're not going to really interrogate deeply those things that may be unique or more common in a particular population."
When the group was asked if they use chemical hair straighteners, Patterson said, "I stopped, because my hair was falling out."
"Sorry to say but clients now have to be educated because some stylists now are just doing it for the money and you don't know," Meadows said.
The Food and Drug Administration proposed a ban on formaldehyde and formaldehyde releasing chemicals in hair straighteners and relaxers in October 2023.
It was initially scheduled to take effect in April 2024, but the FDA has since delayed implementing the ban and has not yet provided a new date, stating the rule-making process takes time.
A full statement from the FDA is provided at the bottom of this story.
"Products that are marketed towards Black women have those certain chemicals in it and so now it actually has me thinking. I need to read the ingredients on everything," Sorrye said. "Even when I put certain lotions on my body, I'm careful not to put them on my breast."
The Centers for Disease Control and Prevention has recognized racism as the root cause of many health disparities. In April 2021, the CDC declared racism a serious public health threat.
"I don't think I fully understood the structural underpinnings of health outcomes for Black women until I found myself in that particular situation where I wasn't given the care that I needed or deserved in spite being highly educated, despite having insurance, despite having access. Simply because I was a brown face in a white system," McCullough said.
She's been studying cancer for two decades and for the past 12 years, McCullough's research has exclusively been focused on cancer among Black women. She says it's important to look at the bigger systemic pieces that impact Black women day-to-day without them necessarily knowing it.
"My experience at that hospital is an institutional racist experience, that racism is built into the institution of providing health care access," McCullough said.
"We want to be accepted, and we want to be heard and we want people to see us beyond the color of our skin," Sorrye said.
Doctors Patel and McCullough have dubbed the first of its kind, VOICES study a "movement" that uplifts the voices of Black women everywhere.
"Take ownership of your health, journal your health," Patterson said. "Because if you don't take that ownership, no one else will."
The American Cancer Society is calling on Black women from all walks of life to join the movement. Visit voices.cancer.org to see if you are eligible to enroll.
Statement from the FDA
"The proposed rule continues to be a high priority and is still in the rule making process. The federal government publishes a semiannual agenda of upcoming regulations in the Federal Register, usually in the Spring and Fall. Please see the Current Unified Agenda of Regulatory and Deregulatory Actions (reginfo.gov). The dates found within the Unified Agenda are goals and projected estimates.
As part of the rulemaking process, the FDA conducted and updated our literature search in addition to performing an extensive risk assessment on formaldehyde and methylene glycol as a cosmetic product ingredient in hair smoothing products and hair straightening products. Based on the science and data, including our risk assessment, focus groups, and evaluation of the current literature that includes more recent data showing a link between formaldehyde and hair smoothing products and an increased cancer risk, the FDA has been working on a proposed rule to ban formaldehyde and formaldehyde-releasing chemicals in hair smoothing and hair straightening products.
The rulemaking process takes time. Before a proposed rule can be published in the Federal Register for public comment, it must be reviewed and approved within FDA and other parts of the Federal government. You can find out more about it here: FAQ (reginfo.gov).
We cannot comment further about timing or content for the proposed rule at this time."