Here is a truth that sucks: Black American women are at a greater risk of dying from several types of cancer at a far higher rate than women in any other racial category. Possible reasons might seem obvious: lack of access or insurance, a difference in education compared to other groups.

The truth of the matter, however, is found not in broad swaths of presumptions and generalizations, but in the details. In stories. In listening.

“I worked with a young physician who lost her life to cancer. It’s something unique about us, that even when we’re married, or educated, still the outcomes look the same,” said Dr. Shana Ntiri, associate professor for Family and Community Medicine at the University of Maryland, Baltimore.

Ntiri is part of VOICES of Black Women, a unique research project from the American Cancer Society that aims to survey 100,000 participants between the ages of 25 and 55 who haven’t yet been diagnosed with cancer.

Everyone online talks about the importance of listening to Black women, but the evidence, at least in medical spaces, is that you don’t. “Misogynoir In Medicine,” a paper published in 2024 by Georgetown University’s O’Neill Institute for National and Global Health Law, detailed how Black women have reported not being believed about their history, pain and symptoms.

“There really is something in the anecdotal that we need to find out. The information from us can be for us. There’s strength in numbers,” said Ntiri, who is also the medical director of the Baltimore City Cancer Program, a community-based screening program of the University of Maryland Greenebaum Comprehensive Cancer Center. “It doesn’t matter if it’s a young teenage mom or the president of a university.”

The VOICES questionnaire, which takes about an hour to complete, covers expected information like family health history and then goes deeper, delving into the possibility of sexual abuse, addiction and personal experiences of bias and racism in medical and other situations.

These experiences aren’t confined to cancer.

In 2017, Centers for Disease Control epidemiologist and new mother Shalon Irving, who investigated medical racism and disparity, died of complications of high blood pressure three weeks after giving birth because, her family members said, doctors dismissed her concerns about pain and swelling. Tennis legend Serena Williams said she nearly lost her life after childbirth, saying hospital staff ignored her insistence that she had a clotting disorder.

Dr. Lauren McCullough, the Atlanta-based co-principal investigator of the VOICES project and ACA’s visiting scientific director in epidemiology, is dedicated to researching and closing these outcomes — for both professional and personal reasons.

In 2021, McCullough’s husband rushed her to the emergency room with severe stomach pain. After waiting for over an hour and hearing she might be sitting another four until triage, “I crawled over to the desk and said, ‘I am not gonna make it,’ and the woman said ‘I can take your name off the list’ as though I was waiting for a table in a restaurant,” she said.

Desperate and in pain, she called doctor friends at Emory University Hospital, were she was rushed into surgery for what turned out to be a rare bowel obstruction. “In another four hours, I would have been dead,” McCullough said matter-of-factly. “If I didn’t have privilege and position, I wouldn’t be here.”

“Historically, marginalized people don’t have people in their network who can move you to the top of the list,” she said. “I was an endowed assistant professor, made a good salary, had really good insurance. It doesn’t really matter at the end of the day. The first thing they see is what is present, which is that I am a Black woman. I wasn’t prioritized.”

I can’t speak for all Black women, but I’ve never met one who doesn’t have a history of not being believed. After the racial reckoning in 2020, many Black women I know spanning different generations and states shared stories on my Facebook page about racism, only to have a white person try to disprove what we were all saying — as if we’d met separately to make up a lie to make them feel bad. That happened more than once. That disbelief is killing us.

I took the VOICES survey myself, and was intrigued by how deeply it examines the experience of existing as a Black woman. Do you feel you have to dress up to get basic service? Have you been followed around stores? Do you find yourself carefully watching your words in public? I found it a powerful tool in encouraging self-advocacy, something a lot of patients weren’t raised to believe they have a right to.

Even Dr. Tonya Webb, associate professor at the University of Maryland’s School of Medicine and part of the cancer center, could’ve used that empowerment when she was dealing with her own medical issues. Webb had a hysterectomy after being diagnosed with large uterine fibroids.

“I feel like the process would have gone better if I would have advocated more strongly for myself. I kept saying, ‘There’s a problem,’ but was told, ‘You can tolerate it.’ There were so many options not offered,” Webb said. Her mother, a two-time cancer survivor, is “living her best life right now because of advances in research. I want that for other people, too.”

Until relatively recently, the medical establishment still taught that Black people feel less pain than other groups, and our current secretary of health and human services has suggested that we should be on a different vaccination schedule than white people. (In full disclosure, I personally know a U.S. Senator who has held him to account for that.)

“In teaching, there are certain things you talk about in theory, but in practice, in everyday life, someone’s story can be much broader in scope. Things present differently in different people,” Webb said. “Hearing these stories can open eyes to different processes.”

The doctors are encouraging more women to join the survey because even though we have different lives, we share “experiences that are unique as Black women,” Ntiri said. “Let’s talk about the science, making sure that our voices are heard. We have to tell these stories together.”