Charlotte women in American Cancer Society campaign

SUSIE MCILWANE

Susie Mcilwane of Charlotte is an ambassador for the American Cancer Society's Voices of Black women study to better understand and improve their health.

Black women are often disproportionately affected by cancer and other health challenges.

The American Cancer Society wants to change that with the Voices of Black Women study, a large-scale cohort that aims to better understand and improve their health. 

Dr. Lauren McCullough, one of the study’s principal investigators, said the goal is to recruit 100,000 participants. There are around 6,000 at present; however, the study is relatively new having launched in 2024. 

“I would say that first recruiting for these types of studies are hard,” McCullough said, “particularly in the digital age we live in. I wouldn’t necessarily say on track; we were hoping to be able to begin to do some scientific inquiry. And 6,000 is still just too few women to be able to do that. … We’d love to get to 10,000 by the end of the year. That’s the number at which time we can begin to do some science and begin to make new discoveries.”

Joyce Wright of Charlotte is an ambassador for the study and cancer survivor who had her first bout with the disease in the late 1980s when she was diagnosed with breast cancer. 

“Progress has been really great as far as how to treat the cancer,” Wright said. “Then in 2021 I found out I had lung cancer, so that was a whole different cancer journey then. And just two years ago I had breast cancer a second time, so I have been on a roller coaster with cancer.”

Wright said becoming an ambassador for the study was a no-brainer, adding it may identify genetic differences that can be addressed through new treatments. That’s why input from Black women is necessary. 

“We do need to find a way to treat the type cancers that I had,” she said. “I think to have a study of that to make sure that we are provided with the medications that will help prevent or help treat cancer for us. Maybe it may not be any different, but there may be just one element that could make a difference in the chemotherapy I took or the radiation that we have.”

McCullough adds the study has two aims: amplify voices and experiences of survivors. 

Joyce Wright of Charlotte is a Voices of Black Women ambassador.

“The first is to better understand why Black women are getting more aggressive types of cancer,” she said. “If these cancers are innately more aggressive and harder to treat, then what Black women are going to have poor outcomes, we need to know what to tell Black women to do to prevent those more aggressive types of cancer. The second part of this is to ensure that they can survive their cancer. So again, those disparities exist in survival. Is it the treatments? Is it integration back into the medical care system? Is it long-term adherence? These are things that we really don't know and understand.”

Campaign ambassador Susie Bell Mcilwaine, a 13-year breast cancer survivor from Charlotte, said what caught her attention as an ACS volunteer is the lack of minority representation for fundraisers and other initiatives. 

“It wasn’t ‘til maybe three years ago, I was advised of this particular program that they were putting in place which was Voices of Black Women,” Mcilwaine said. “So, at that moment, I realized it was an opportunity for me to lend my voice, not only lend my face and just showing up, but it was opportunity for me to use my voice to let people know, ‘Hey, I survived, and this is what we have going on in our community as minorities.’ 

“So, as I started volunteering and working with Voices of Black Women, I’ve spoken anywhere I can speak. I’ll tell anyone. If I speak to one or 1,000 people, it doesn’t matter, as long as I reach one person, because I never want anyone to go through what I went through in the process.”

Mcilwaine doesn’t want Black women to miss their chance to be heard.

“As an ambassador, I want to go around and let everybody know about the program and let them know we need you to get involved,” she said. “This is an opportunity for them, anyone to hear our voice. We can’t say no one is listening to us if you don’t speak when you give the opportunity to speak.”

McCullough wants to make sure everyone knows the study is safe. The history of medical mistreatment and malpractice against Black Americans has led to skepticism and hesitancy of studies and research like this. She wants to ease those concerns. 

“I would say all of your concerns are valid,” she said. “I think it’s important that we acknowledge history and how history has really sort of used and abused black women for medical advancements that then didn’t advance the health of black women. … Voices is overseen by the Institutional Review Board at Emory University. They ensure patient [and] volunteer participants rights. In this study, we do a lot to ensure the privacy of the information that we collect, and so your personal identifying information, like your name, address, phone number, etc, are never tied to your survey data. Even as one of the lead scientists on the study, I can only have access to survey responses.

“This study is purely observational, so we’re just asking you to report to us kind of what’s happening in your day-to-day life. Where do you live? Are you able to get fresh fruits and vegetables? Do you have a sidewalk? Do you exercise? How do you sleep? The fact that it is observational lessens the risk.”

Wright and Mcilwaine both want to make it clear the study will benefit the future health of Black women. 

“Now is the time for us to take advantage of an opportunity to help find a way to combat cancer and to change cancer from the way we see it today or the way we saw it 38 years ago,” Wright said. “The only way we can get better is through asking questions and providing answers and if, if folks want to feel comfortable, I think the main thing about doing this survey is do something that can help you in the future and protect those who will be coming of our younger generation that’s coming up after us be a part of finding the cure.”

Said Mcilwaine: “There are some disparities when it comes to African American women. … I think that we have to be one to advocate for ourselves and any person participating in this study, we can’t focus on what happened in the past. If we continue to focus on disparities, malpractice, and say I don’t want to get involved, because they’re just going to not take care of us or treat us the same. No, you have to look forward and let your voice be heard.”

On the Net: 
voices.cancer.org

Comments