The lack of health data about Black Canadians can be life-threatening: study

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Black Canadian women may be under-screened for cervical and breast cancer due to the lack of health data collected about Black Canadians more broadly, a new report suggests.

A new literature review from the University of Toronto noted Black Canadians make up the third largest minority group in the country, but researchers could find only 23 studies pertaining to breast cancer, cervical cancer and Black Canadian women within in the last 15 years.

This is especially alarming because there is some evidence to suggest Black women could be predisposed to worse outcomes from these diseases.

A 2016 study by the U.S. Centers for Disease Control and Prevention found that Black American women are more likely than white women to get triple-negative breast cancer, a highly aggressive type of cancer known to return after treatment.

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“Although this scoping review was focused on breast and cervical cancer in the Black Canadian population, the bigger issue is the fact that in Canada, so much is unknown when it comes to health disparities faced by minority groups, whether due to race [or] racism, ethnicity, or culture,” researchers said in the paper.

In reviewing the available data, researchers also found variation across different Black communities.

“Black Caribbean women appear to actually get screened at the same rate or even higher than white Canadian women, but Black women from sub-Saharan Africa appear less likely to be screened,” said lead author Dr. Onyenyechukwu Nnorom.

From left to right: Dr. Aisha Lofters, Dr. Onye Nnorom, and Nakia Lee-Foon. Photo: University of Toronto

Without research into the health of minority groups, differences like these go unnoticed and policy can’t be updated to reflect the group’s unique needs — effectively leaving them vulnerable.

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Nnorom says this contributes to the larger problem of systemic racism in Canadian health care, which can affect everything from the individual patient to the medical trials that receive funding and the ones that don’t.

“On the individual level … the woman who is diagnosed with breast cancer is saying … ‘I need you to believe me. I need some answers about how this could affect me [as a Black woman],'” said Nnorom.

“A lot of providers, because it’s not in our guidelines, it’s not part of our practice.”

Cancer remains taboo in many Black communities

The lack of health data about Black Canadians can start a vicious cycle of misinformation that leads to taboo within the Black community.

Without accurate data, there’s little information available for patients, and without information, members of the community remain unaware of their unique risks. This can lead a disease or procedure to become a taboo — something cancer still is within the Black community.

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Leila Springer has seen this first-hand, first as a cancer patient and then in her volunteer work.

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“The word cancer alone presents a certain amount of fear … It’s almost synonymous with death,” said Springer.

“We have to work at educating them to the point that they understand that kind of diagnosis of cancer doesn’t mean a death sentence.”

In Springer’s experience, education is the key to dispelling the taboo.

“We want women to know that they can access certain services … but a lot of them don’t because talking about it is sort of trouble,” she said. “They find it difficult to share with their family members.

“I’ve heard some stories about women whose mother died from breast cancer, but they had no idea until after the funeral and they were going through papers.”

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But in order to properly educate these women, Springer needs access to updated health data — which doesn’t really exist yet.

“When I was diagnosed [with cancer] that’s the one thing I wanted to know. I wanted information about the type of cancer I had, I wanted to know how many people that looked like me had this type of cancer, and I wanted to know how many of them survived,” she said.

“I couldn’t find that information.”

That’s why she started the Olive Branch of Hope, a community organization in Toronto that advocates for Black women, supports research efforts and serves as a place of support for patients.

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“[When I had cancer], I’d find myself sitting in groups where there were mainly Caucasian women that attended,” she said.
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Springer admitted it’s gotten better over the years, but the ways in which women deal with a cancer diagnosis is largely informed by culture — and the support groups at the Olive Branch strive to recognize that.

“We make our support groups different,” she said.

Research and data are needed to change health guidelines

It’s crucial to collect health data about different groups of people because hard numbers are what make it possible to update policy. If it’s true that Black Canadian women also tend to have worse breast and cervical cancer outcomes, screening guidelines should be amended to begin earlier for those women than it does now.

“I’ll give you an example,” Nnorom said. “Within the Ashkenazi [Jewish] population, there has been research to show that these are people who carry genes that put them at higher risk for breast cancer.”

This means Ashkenazi Jewish patients begin frequent cancer screening at an earlier age, a guideline recommended by the government and one which effectively saves lives.

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In Nnorom’s view, Canada’s health care system can only be improved once medical researchers and front-line workers begin to address — and accommodate — the risks and needs of different racialized groups.

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“One of my colleagues was saying we’re pretty much at the point … where it’s willful blindness, because we know that there are disparities linked to either race or ethnicity on ancestry and other issues and we’re not looking into it,” she said.

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