Project starts vital conversations to bridge a massive divide between Canada’s health-care system and the African, Caribbean and Black communities.
September 19, 2024
Cheril Wilson Smith’s daughter was in excruciating pain from sickle cell disease when she brought her into an area emergency department needing urgent treatment.
“I just figured when you go into the ER, doctors would know about that,” Wilson Smith said. “But I’ll never forget how I felt when the doctor asked me if I was sure that she had sickle cell. A doctor in the ER was very reluctant to aggressively treat the pain and so we ended up being in so much more pain than we needed to be for a longer period of time.”
Getting proper treatment at Ontario hospitals for Wilson Smith’s three kids with sickle cell was so stressful that she moved her family of eight children to Ancaster to be closer to McMaster Children’s Hospital, where more staff know of the inherited blood disorder that mainly affects people whose families came from Africa, Central America, South America, the Middle East, Asia, India, the Mediterranean or Southern Europe.
One in 365 Black babies in the United States is born with sickle cell disease and periodic episodes of extreme pain is a well-known symptom.
“It’s been very hurtful, feeling like I need to go in there and fight,” Wilson Smith said about her visits to various Ontario hospitals. “It’s an awful feeling when you’re sitting there trying to advocate for your child and you feel like you’re not being taken seriously.”
When trying to get her kids the care they need, particularly strong painkillers, she says she’s faced stereotypes and been accused of drug seeking — despite being a social-services worker in addictions.
“One of my fears was always being labelled the angry Black woman. I’ve had the social worker come,” Wilson Smith said. “I feel like they’re trying to quiet me down because I’m strongly advocating for my child … Your staff should be trained on dealing with diverse diseases that affect different populations in a very serious way.”
It is experiences like those faced by Wilson Smith and her children that have left many in the African, Caribbean and Black communities wary of the health-care system, says Jacqui Getfield, project manager of an initiative that aims to confront anti-Black racism in health.
Jacqui Getfield is project manager of an initiative that aims to confront anti-Black racism in health called Caribbean African Regenerative Medicine (CARM).
The significant consequences of this mistrust can be seen in the hesitancy of those communities to step forward to be organ donors. Access to living kidney donors is 50 to 60 per cent lower than the Canadian average despite African, Caribbean and Black communities being at greater risk of developing kidney failure. As a result, the Caribbean African Regenerative Medicine (CARM) project has made organ donation one of its primary targets.
“Because there is racism, health inequities, distrust, these are the things that I would say influence the low numbers,” Getfield said. “CARM aims to build trusting relationships for these reasons.”
The project works both with the communities themselves to create knowledge and confidence in the health-care system but also with doctors and other health professionals.
“Those who occupy professions in medicine, we want to ensure that they understand the experiences of racialized people,” Getfield said. “It is important that we begin to mend these fences.”
Toronto researcher Dr. Istvan Mucsi has been studying who gets organ transplants and who doesn’t for 10 years.
Dr. Istvan Mucsi, transplant nephrologist at Toronto’s University Health Network, found African, Caribbean and Black patients have much less access to living donor transplant compared to white patients.
“This was based on the notion that access to transplant and utilization of these treatments may not be equitably distributed between different groups of people,” said Mucsi, co-lead investigator of CARM and a transplant nephrologist at Toronto’s University Health Network (UHN). “We confirmed that African, Caribbean, Black patients have much less access to living donor transplant compared to white patients.”
The findings were a major concern considering the higher need for organ donation among those populations.
“There is a fairly high risk in these communities for chronic conditions like diabetes, high blood pressure, heart disease. Kidney failure is also more frequent among these communities,” Mucsi said. “There are concerns that access to health care and access to trustworthy information is inequitable … We started to go out … to understand the potential reasons behind these inequities.”
The research was the start of a conversation with African, Caribbean and Black communities to try to understand and break down the barriers creating inequities.
“There is a deeply rooted distrust towards the health-care system,” Mucsi said. “The resources that are available to inform the community at large about health conditions and treatment options are not really tailored to the needs of Black individuals … The generational history of maltreatment and discrimination is a major factor. They don’t feel welcome in health-care institutions. Frequently they feel that they are not treated the same way as other patients are treated.”
These findings came as a surprise because the researchers had originally felt that racism in health care “is not really an issue in Canada,” Musci said.
“We haven’t really thought too much about racism here,” Musci said. “It was clear that, unfortunately, the Canadian health-care system also suffers from systemic or structural racism, and people of colour, people from racialized communities experience this — and it has an impact on their health and their access to care.”
The conversations also showed the need for more understanding of traditional culture when treating African, Caribbean and Black communities.
“They do prefer a more holistic approach to managing chronic conditions with traditional approaches, herbal medicines and relying on medications as well. There is a concern about surgical approaches,” Musci said. “We create miscommunication and mistrust by trying to stick to our principles and Western medical approaches.”
The same inequities can be found in donations of stem cells and blood, Getfield said.
“We have a problem because when we need stem cells and we get sick, the possibility and probability of matching is low to nonexistent,” Getfield said. “We hope to create a space for real dialogue between patients, caregivers, family members, doctors and nurses.”
CARM started the conversation with webinars, conferences, workshops and community events like one held in Hamilton on March 26 that brought together doctors, health-care professionals, scientists, community leaders, patients and members of the public for “reciprocal learning.”
“This doesn’t happen every day in the Black community,” Getfield said. “The conversations were rich.”
Wilson Smith took part in the Hamilton event hoping it will help make a difference, especially as one of her children has moved into the adult system and another will make the transition soon. She worries that they will face stereotypes, be accused of drug seeking and have difficulty getting the care they need in other cities or hospitals when they no longer go to McMaster for sickle cell disease.
“I find that actually quite appalling considering I was born here and we live in such a multicultural country,” Wilson Smith said. “It was very important for me to get to speak because I wanted people to get some type of an understanding of the experiences that mothers and families go through in the health-care system … We have a great health system in Canada but there are still a lot of problems.”
The funding for the project from the University of Toronto’s Medicine by Design ran out in March, but the work has continued regardless as those involved search and apply for new ways to pay for it.
“Conversations like these, as important as they are, there is a cost,” Getfield said. “We need people to walk alongside with us — government officials, corporate officials, medical officials.”
So far, the funding gap is being filled by philanthropy funds from the UHN Foundation, Musci said.
“These are vital and very relevant discussions that need to be had with the community,” Musci said. “Certainly, for the medical and the research community, it’s important to listen to what people have to say. We need to work on these issues and challenges together and need to identify the biases that we have in order to overcome them.”
Joanna Frketich is the health reporter for the Hamilton Spectator. Reach her at jfrketich@thespec.com.