In September, IU School of Medicine announced a new clinical trial, targeting African American women with breast cancer to better understand types of treatment and how neuropathy affects individual black women. Leaders with the RED Alliance and Pink-4-Ever say this trial is important for their community in Indiana, as well as nationwide.
RED Alliance Executive Director and 12-year breast cancer survivor Lisa Hayes says her organization has an intentional focus on research.
“Participating in research is good and there are protections there that may not have been there in the past,” said Hayes. “We want to be able to show that you can participate in research and it would be in a protected environment for you, but also you’re doing something for a larger good. It may or may not help you, but think about the legacy you’re leaving for your family, the community at large.”
Hayes was diagnosed with triple negative breast cancer on May 1, 2007. She was the first person in her family to be diagnosed with it and at the time, she didn’t really understand much about the disease. After surgery, chemotherapy and radiation, there were no drugs for her to take to reduce the risk for reoccurrence.
“That hit me hard,” said Hayes. “It left me with a sinking feeling. What am I supposed to do? I’m just supposed to hope it doesn’t come back? That’s pretty much how it is for triple negative right now.”
Since then, Hayes was determined to be an advocate for breast cancer patients, specifically focused on ending disparities among minority populations.
“Breast cancer is not a one-size-fits-all disease,” said Hayes. “It’s impacting black women differently than it does other ethnicities, so we have a different impact. For me, that calls for different interventions and different approaches.”
The new breast cancer trial through IU School of Medicine is a different approach, one that Pink-4-Ever President Nadia Miller says she’s grateful to see finally happening.
“I thought, ‘about time.’ I did,” said Miller. “It’s about time for the researchers to come looking for it. Black women have been suffering from neuropathy. I’ve been suffering from tingling in my fingers. I’ve been suffering from numbness in my toes. I’ve been suffering from this thing. Name it. While clinical trials are prominent – and they should be – and we need it for subsets and demographics, the bottom line is, where are you putting your clinical trial information? Because if you’re not putting it at the beauty shops, the barber shops, if you’re not putting it at church, which is a pillar of our community, then where are you putting it for the black community?”
Miller was also diagnosed with breast cancer in 2007. She went through a year of chemotherapy, double mastectomy and total hysterectomy. During her treatment, she noticed none of the pamphlets at the doctor’s office included women of color and felt like something should be done about that. Through all of this, she signed her emails with, “Pink 4 Ever,” which has now become the name of her cause. In the last 12 years, Pink-4-Ever has serviced more than 3,000 people, helped more than 1,100 women get screening mammography and paid for many families’ school supplies and groceries.
“Groceries are simple things, but when you don’t have money, it’s a big thing,” said Miller.
Miller worked for Roche Diagnostics for 15 years, which she says has helped her see the value of clinical trials. She says this research is important, not just for participants, but for those who may come after them.
“I have a daughter,” said Miller. “Legacy is important to me and research, to me, spins out to legacy.”
Miller and Hayes have both experienced neuropathy, but say their symptoms were tolerable. They hope this clinical trial will be helpful in finding solutions to neuropathy for other black women.
“You have to be intentional with what you’re doing,” said Hayes. “So if your intention is to address the disparities black women face, you have to meet that community and fashion interventions that will be effective for that community, whether it’s based on genetic makeup or whether it’s based upon some cultural attitudes or differences in how the disease presents, then you want to find some solutions specifically for them. That’s what precision health is all about.”