National survey finds Canada’s health system often fails to treat Black women and girls properly and plans to change that

She was sent home with an infection that she didn’t know she had because she wasn’t told how to look for it on her skin tone.

 

When doctors and nurses told her what to watch out for during post-cancer-surgery care, simple but vital information was missing. She was taught what the appearance of infection would look like, but it did not include descriptions of the appearance on diverse skin tones, only white.

 

She wound up back at the hospital, treated right away in the emergency room because she was septic. She would have died if she stayed at home.

 

Koko Agborsangaya said once the tests came back positive for breast cancer seven years ago, she felt thrown into a health-care system that was not prepared to adequately treat her.

 

“Suddenly I have so many appointments, it’s literally a full-time job managing all these professionals who are making life-and-death decisions,” said Agborsangaya. “And then for me, I was pregnant and I am Black.”

Agborsangaya, who is cancer-free following a double mastectomy, is now a board member with the Black Women’s Institute for Health, a new non-profit advocating for Black women and girls across Canada.

 

The Black Women’s Institute for Health is conducting a national survey on the experiences of Black women and girls within the health-care system in Canada. The survey, Voices UnHeard, is the first national attempt to collect data by and for Black women on their experiences in the health-care system. Until now, virtually all the data health-care providers rely on for Black women and girls in Canada has been collected internationally.

 

“I started to look for data here in Canada and couldn’t find anything,” said Kearie Daniel, founder of the Black Women’s Institute for Health. “I didn’t quite grasp just how severe the lack of data around (Black women and girls’) experiences were.”

 

According to a recent study conducted at the University of Ottawa using Statistics Canada data, a Black woman in her 40s faces a breast cancer mortality rate that is 40 per cent higher than a white woman of the same age group. Black women are also more likely to present with aggressive triple-negative breast cancer, which has much poorer survival rates.

 

Work has been done to research breast cancer rates disproportionately affecting Black women in the U.S. and the U.K., said Dr. Aisha Lofters, a scientist at Women’s College Hospital specializing in cancer screening, but very little has been done looking at that in Canada. “We need to understand our particular context and what it means for Black Canadian women.”

 

Lofters said some Black women, specifically those who are of West African ancestry — including women from the Caribbean, Nigeria and Ghana — “seem to be more likely to have more aggressive types of breast cancer.”

 

When it comes to screening for breast cancer, experts say Black women are statistically less likely to find out in early stages. “Black women are more prone to have breast tissue that is often denser, and so it’s harder to read the results on a mammogram,” said Daniel. “In Canada, Black women don’t experience the health-care system the same.”

 

The health system in Canada needs to be prepared to deal with demographic realities, said Agborsangaya. “They need to ensure they are teaching this in medical schools and that doctors are prepared to work with the diversity of patients that they will encounter.”

Lofters said if clinicians don’t know breast cancer can present earlier for Black women, they might tell a patient they are too young to have the cancer. “We’ve heard that story, unfortunately. By combining the data that we have with surveys like (Voices UnHeard) we can start to understand where people are really not experiencing the best quality care that they can,” she said.

 

The organization is aiming to receive at least 3,000 submissions by Black women and girls across the country, Daniel said. “I really hope Voices UnHeard starts to drive and change the conversation on health care for Black women and girls in Canada.”

 

Voices UnHeard is open to all Black women and girls 16 and up across Canada and can be found on the organization’s website, bwhealthinstitute.com.

 

The institute is collecting responses until Dec. 30 and will create a report that shows the disparities within the health-care system for Black women and girls across the country.

 

 

 

 

This article was first reported by The Star