Research highlights disparities in breast cancer care for black women in Canada

Adeola Adesemovo felt the change even before she was diagnosed.

It was subtle at first – easy to dismiss – but persistent enough that she was taken to a small, fluorescent-lit room where answers were to be given. She came ready to listen.

What she didn’t expect was that she would not only have to insist that something was wrong, but also insist that she be believed.

The experience left a lasting impression.

“They asked me to rate my pain. I told them it was more than a 10. Someone said to me, ‘Oh, you’re black, you guys don’t feel that much pain,’ and she was a nurse,” recalls Adesemovo, who lives in Calgary.

Due to her young age and no family history of cancer, Adesemovo had to advocate for mammograms and additional screening. She was diagnosed with breast cancer in 2021 at the age of 36.

Alberta Health Services (AHS) Recommends mammogram screening Every two years for asymptomatic women ages 45 to 74.

But Study shows black women Breast cancer is more likely to be diagnosed at a younger age, often outside the standard screening time frame.

Heather Campbell knows this all too well.

Campbell, a chemical engineer who lives in Calgary, was diagnosed with breast cancer in 2017 at the age of 44. After six rounds of chemotherapy, breast surgery and radiation, she is now undergoing hormone therapy.

SShe says she also faced resistance when requesting a mammogram. She wants to see more culturally informed health care and use race-based data to better serve Black women in the medical system.

During her cancer treatment, Campbell felt that her oncology team struggled to deal with its side effects. exist differently among black womenLike hair fall and hyperpigmentation.

When it came time for her breast reconstruction surgery, she expressed concerns about scarring and healing on darker skin. Her plastic surgeon had no clear answer.

That conversation brought about change. Surgeons changed their approach to the procedure and how they trained residents, reshaping the practice in response to a gap that had long been overlooked.

“We have to get to a place where we can actually utilize the full diversity of our population, and not be afraid of it, but recognize that we need medical practice and medical diagnostics that treat the full diversity of the population,” Campbell said.

Adesemovo and Campbell’s journey through the health care system reflects experiences shared by many black women in Alberta, according to researchers working to improve cancer outcomes in the community.

But Campbell says those experiences haven’t yet translated into changes in breast cancer care.

by numbers

Breast cancer is the most common cancer among Canadian women, with one in eight women expected to develop it in her lifetime.

Much of the evidence used to shape breast cancer screening guidelines, risk-assessment tools, and treatment protocols is drawn from clinical trials and cancer registries in which Black women are underrepresented or where race-based data are not consistently collected.

The consequences of that difference are: National Canadian Research Show Outside the age range targeted by routine screening, black women are 45 percent more likely than white women to be diagnosed with breast cancer before age 50.

Data shows other disparities persist For black women. they face up to Death rate from breast cancer is 70 percent higher. About 26 percent of black women are diagnosed at stage 3 or 4, compared to 17 percent of white women. Studies also show that black women are more likely to develop aggressive subtypes, such as triple-negative breast cancer, which may affect treatment options and outcomes.

Despite the risks, screening rates remain low.

Understanding the Barriers

To understand that, researchers at the University of Calgary turned directly to black women.

Bukola Salami, Canada Research Chair Health of black and racialized peopleConducted focus groups with over 100 Black women and community stakeholders across Alberta. Research funded by the Canadian Cancer Society in partnership with the African Cancer Support Group discovered Women face obstacles in getting tested for breast cancer.

Participants described mistrust of health care providers, discrimination, and a lack of culturally relevant information about breast cancer. Unconscious assumptions about knowledge, pain tolerance, age, and health literacy also shaped interactions with providers.

historical events such as Tuskegee syphilis experiment In the United States, personal experiences with bias have also contributed to a long-standing suspicion of the medical system.

“This includes ignoring the concerns of black women. It also includes unconscious bias by health care providers,” Salami said of the focus groups’ findings. “Cultural stigma and the way health care providers respond to black patients’ concerns were among the biggest barriers to accessing care.”

The research also identified what works. Community-based outreach and culturally informed education have significantly increased willingness to participate in screening and follow-up care.

community led support

Grassroots organizations have become important in bridging the gap between the health care system and communities of color.

African Cancer Support GroupLocated in Calgary, Connects survivors with newly diagnosed women, providing guidance rooted in shared cultural understanding. The organization helps women navigate appointments, interpret test results, and build support networks, while also addressing emotional and cultural needs.

The group also encourages Black women to participate in clinical studies with the University of Calgary, emphasizing that research cannot improve care if communities are excluded.

“There is very little research into the black community,” said Yinka Oladele, the organization’s executive director. “We’re only bringing it out there because it can only be done by us, for us.”

Moving towards equitable care

Salami’s research highlights actionable ways to reduce disparities. Culturally tailored outreach programs, training for health care providers on unconscious bias, policy adjustments to reduce structural barriers, and incorporating cultural and religious supports into health care may improve outcomes.

“The next thing is for us to launch an intervention that involves interacting with black women based on African traditional knowledge systems to improve the health of black women,” Salami said. “We will also use peer navigators – people culturally embedded within the community – to increase and improve breast cancer screening awareness.”

By combining research with community input, her work aims to increase early detection, lower mortality and morbidity rates among black women in Alberta, and provide evidence that can guide policy and practice.

From Experience to Advocacy

After her diagnosis, Adesemovo began working with other women in the black community, helping them cope with life with cancer. She shares her story, offers guidance, and connects women to survivor networks that provide emotional and practical support.

“I found a community where I could share my story without shame,” she said. “Don’t be afraid. Go for your checkups. Not every cancer leads to death, and when you find it early, the prognosis is much better.”

Their journey mirrors the experiences of many of the women in the focus groups – stories shaped by systemic challenges, personal advocacy, and community support.

They say it’s a reminder that addressing inequities requires listening to those most affected and involving them in developing solutions.