Researchers are searching for Black women in Alabama to help solve America’s cancer crisis.

Black women are more likely to die from breast cancer than white women across the United States, even though Black women have lower breast cancer incidence rates, according to a 2022 American Cancer Society study. Researchers hope that testimonies of Black women across all stages of life and health can help to decrease health disparities in marginalized communities.

“This is a longitudinal, decades long study of 100,000 Black women so that we can better understand why Black women are more likely to be diagnosed with aggressive types of tumors and why, upon being diagnosed with cancer, they are less likely to survive,” Lauren McCullough, co-principal investigator of the VOICES of Black Women study, said. The project was created by the American Cancer Society.

“I’ve been really focused on why Black women die specifically of breast cancer disproportionately. All of my research has really been to understand why we see these gaps,” McCullough, who has worked on the topic for the past decade, said.

McCullough said she has worked with cancer survivors over the years who have been turned away by their doctors after asking for a cancer screening, or who had no insurance and no way to pay for treatment after being diagnosed.

“One of the things that we often hear and are told as Black women is ‘you need to be better advocates for your health, Black women need to ask for screens, Black women need to do this and that’ but Black women are. And oftentimes Black women are ignored, our pain is ignored, our needs are ignored,” McCullough said.

A survivor’s perspective: ‘We have to speak up’

At age 56, Janice Johnson, a member of the American Cancer Society, is a relatively young survivor of colorectal cancer.

Johnson was diagnosed at age 48 in 2016. The minimum screening age was 50.

“For me, cancer was just a very shocking diagnosis. I had no idea. No family history, and at the time, I really didn’t feel like I had any symptoms,” Johnson said.

“When I first got diagnosed, I was just so scared. For me, it just felt like a death sentence. And so I went in search of a doctor that looked like me. I went looking for an African American oncologist and I was shocked to find that they are few and far between.”

Johnson was diagnosed with stage four colon cancer with metastasis to her liver. Her journey was not easy.

“I’m sad to say that there was a period in my treatment where I was mistreated. One of the things I think contributed to that is that we don’t want to be our own advocate,” Johnson said. “Fear keeps us from being our own advocates and that fear goes back to a lack of knowledge.”

Johnson said she hopes the VOICES of Black Women study will help Black women to better advocate for themselves.

She believes policies such as lower screening ages, Medicaid expansion and cancer education funding can decrease the death rate among Black women.

“As a Black woman, we have to educate and we have to speak up. If you’re scared, do it scared,” Johnson said. “That knowledge is important because when we know, we don’t feel so alone and so isolated.”

How you can participate in the study

To participate in the study, participants must be Black women, live in one of the 20 participating states, be between the ages of 25 and 55 and never have been diagnosed with cancer.

Participants will fill out a short registration survey and after that, the American Cancer Society will be able to follow up with the participant over a 30-year period through twice-a-year, 30 minute check-ins.

The survey will ask about family history, income, access to healthcare, medical conditions, lifestyle habits like dietary, physical activity and sleep, social stressors like quality of life, mental health, experiences of racism and discrimination.

“There’s still a lot of pushback when we talk about structural racism in health. There’s still a lot of pushback when we talk about provider biases in health. And I think when we have that quantitative data, along with those qualitative studies, I think there will be more acceptance of how we all have contributed to this problem,” McCullough said.

Over time, these factors may inform researchers of why Black women are dying at a higher rate and help them understand what can be done to decrease those deaths.

McCullough said the three main goals of the study are to inform the Black community of what factors may contribute to higher death rates, disseminate the results of the study to the medical community and lastly create policies to protect the health of marginalized communities.

“My hope is that when women decide to partner with us that they feel safe and that they feel like their voices have been heard. The biggest dream for me will be that we have solutions that are culturally appropriate and relevant to narrow some of these gaps to hopefully get at solutions that are going to be applicable to Black women,” McCullough said.