Two days after school started in September 2023, six-year-old Moses was admitted to Toronto’s Hospital for Sick Children (SickKids) with excruciating pain. He was experiencing a vaso-occlusive crisis, which happens when cells become lodged in a blood vessel, blocking blood flow to part of the body. The episodes are a common symptom of sickle cell disease, an inherited condition that Moses was diagnosed with at 14 days old.
Moses spent a month in the hospital. At one point, as he lay hooked up to an IV delivering pain medication, there were 10 or more people in the room discussing his treatment, recalls his mother, D. Ramsay (who requested their family’s full names not be used for privacy reasons). “It could be so overwhelming at times,” she says. “I’m a Black mom, so I have to be very mindful.” Before the family had access to ongoing care at SickKids, Ramsay, an employee engagement manager, was in the habit of keeping her son’s medical records in the car, in case they were needed. On the rare occasions they wound up at a hospital closer to Scarborough, where they lived at the time, she often had to answer very specific questions about Moses’s health — what were his baseline hemoglobin levels, for instance. Once, Ramsay says, a care provider admitted they didn’t know what sickle cell disease is.
“It instilled fear in me,” she says. “I am asking this hospital to help my son and the medical professional there doesn’t have basic knowledge of his disease.”
People with sickle cell disease have a genetic mutation related to hemoglobin, the protein in red blood cells that carries oxygen. The mutation warps the cells, causing them to become sickle-shaped, which interferes with blood flow and can cause severe pain, organ damage and other problems. According to Canadian Blood Services, sickle cell disease affects more than 6,000 Canadians, a disproportionate number of them from African, Caribbean and Black (ACB) communities: as many as one in 10 people of ACB descent carry the trait that can pass on the disease.
Compounding that issue is the fact that members of ACB communities must contend with systemic challenges that affect not only their access to adequate care, but their overall well-being. According to the Public Health Agency of Canada (PHAC) anti-Black racism and discrimination in areas such as education, income and housing are key drivers of health inequalities faced by Black Canadian communities. Data collected between 2010 and 2013 found that the rate of diabetes among Black adults in Canada was 2.1 times higher than that of their white counterparts.
Black individuals often face racism in hospitals or doctors’ offices; as a result, many avoid engaging with the health-care system, says Jacqueline Getfield, who works at the University Health Network (UHN) as project manager for Caribbean African Regenerative Medicine (CARM). It’s a new initiative funded by Medicine by Design that aims to bridge the gap between ACB individuals and regenerative medicine, which uses science to help the body heal itself.
Because regenerative medicine has tremendous potential in the treatment of chronic conditions — such as diabetes, cancer and sickle cell disease — it “should be a household term for everyone, but especially for ACB communities, who have more pressing issues within the perspective of chronic disease,” says Getfield. CARM is leveraging researchers, clinicians, nurses, medical paraprofessionals, students and community members to improve medical support for Black communities in the field.
Promising new treatments
Regenerative medicine is a collaborative science, bringing together experts from various areas including biology, chemistry, computer science, engineering and robotics to “replace or regenerate failing tissues, cells, organs and functions” in the body, explains Dr. Istvan Mucsi, a professor at the University of Toronto, nephrologist at UHN’s Ajmera Transplant Centre and a co-lead investigator at CARM.
Organ and stem-cell transplants are familiar applications of regenerative medicine, but recent advancements, such as tissue engineering, artificial organs and gene-editing technology, which is now being studied in Canada, give a sense of the expanding potential of this field. Currently, stem-cell transplants are most often used to treat people with cancers, such as leukemia and lymphoma, but the transplants are also a known cure for sickle cell disease.
In 2017, for the first time in Canada, a sickle cell anemia adult patient was cured of the disease through a stem-cell transplant at the Tom Baker Cancer Centre in Calgary, Alta. The procedure for allogeneic stem cell transplants is complicated, involving hospitalization, chemotherapy and infusion to introduce the donor’s cells into the body, and the possibility of serious complications, such as graft-versus host disease, increases with age, says Dr. Jacob Pendergrast, a hematologist and medical director of the Blood Transfusion Service at UHN. Because of these risks, this approach is done only rarely for sickle cell disease and only under specific circumstances. It’s currently only offered to severely affected patients who are still well enough to tolerate the procedure and who also have a perfect match sibling who can serve as a stem cell donor, he says.
But new, innovative treatments could provide hope for patients like Moses. “Gene therapy allows patients with sickle cell disease to act as their own stem cell donor by genetically modifying their own stem cells to minimize the effect of the sickle cell mutation they were born with,” says Pendergrast. “When successful, the transplant of genetically modified patient stem cells effectively cures the patient of sickle cell disease.”
Health Canada approved two different types of gene therapy for sickle cell disease and transfusion-dependent thalassemia in September, one developed by Vertex Pharmaceuticals and the other by CRISPR Therapeutics. While this marks a significant development in sickle cell research, they require specialized facilities to perform, and the cost of treatment can be as high as $2 million per patient. As a result, neither therapy is widely available yet, and there are a lot of hurdles that would need to be overcome before these therapies could be provided to everyone who needs them.
Ramsay and her family are already preparing for that possibility. When the 39-year-old gave birth to her second child, Samson, last winter, she and her husband decided to save blood from his umbilical cord. Their doctor and genetics counsellor at SickKids had advised them that this cord blood was rich with healthy stem cells that might someday help Moses. According to Canadian Blood Services, siblings have a relatively high likelihood (25 per cent, in most cases) of being a potential stem cell match. While the Ramsays knew Samson’s blood could be necessary if Moses needed a transfusion in the future, they were also drawn to the idea that researchers in regenerative medicine are now exploring how stem cells can treat chronic diseases such as leukemia, diabetes and arthritis.
“It was that promise: of what Samson’s blood could one day be used for, not only for Moses, but also for himself, that really pushed us to do it,” says Ramsay.
Improving care
The Ramsays’ experience helps illustrate the importance of CARM’s work. Because they had an existing relationship with the team at SickKids, the family was provided with key information about regenerative medicine that was relevant to their needs — and they were able to trust the validity of that information. But that trust was hard won. Ramsay says she’s learned to suppress her emotions and adopt a “corporate voice” when advocating for Moses, so people take her seriously. “But I fear my son will grow up and not have me and may encounter the challenges other people have faced,” she says. For instance, she’s heard from other people with sickle cell disease — Moses’s godmother among them — who have spent hours waiting for care in ERs, or have been accused of just trying to get pain medication.
For Dr. Carl James, a sociologist, professor and the Jean Augustine Chair in Education, Community and Diaspora at York University, who joined CARM as co-lead investigator in 2022, this points to an overall reluctance within ACB communities to talk about health problems with doctors or even to seek medical attention due to the ongoing history of anti-Black racism in health care. In the past, medical tests were conducted on members of Black communities without their knowledge or consent. And there are ongoing issues, such as treating a worried mother as aggressive during a hospital visit. “I want to see a diversity of medical practitioners providing care,” he says, which would help build that trust.
Ideally, that diversity would help address what Getfield identifies as a lack of understanding within health care when it comes to the complexity of Black communities, where groups from different ethnic backgrounds or with different religious or cultural beliefs “have their own values,” she says.
For Muslim Canadians, concerns about the religious permissibility of kidney transplant might make community members hesitant. Without a trusting relationship in a doctor, a patient might not feel comfortable discussing race, religion or the other hesitations they might have for a treatment that doctor is proposing. “Trusting relationships equals caring relationships,” says Getfield. “Trusting and caring are reciprocal — it is difficult to truly care for those you do not know or definitely don’t trust. And it is difficult to trust people if you believe they don’t care about you.”
CARM’s mission to raise awareness in the Black community involves meeting community members where they congregate. For instance, the group recently held an event, titled “Building Trust,” at the McMaster David Braley Health Sciences Centre in Hamilton, Ont., with many different community groups in attendance.
One of the speakers was Dorothy Vernon-Brown, who founded the charity Donor Drive 4 Dorothy (DD4D) in 2014 after a stem cell transplant helped her in her own battle with leukemia. Through DD4D, she has been encouraging more Black people to participate in the national stem cell registry, a public list of healthy volunteers for stem-cell transplant. Matches are more successful between people from similar ethnic backgrounds. Only 1.88 per cent of the donor pool in the registry is Black, and members of the ACB community have just a 3.7 per cent chance of finding a match, she notes.
To become part of the registry, all it takes is a simple swab. Vernon-Brown has been advocating for registry parties, which typically involve a group of friends or community gatherings and swab kits from DD4D. Last February, Vernon-Brown mounted a campaign to swab 5,000 healthy Black Canadians aged 17 to 35 to become part of the registry by the end of the year. Although they didn’t reach that mark, she says, “when we present the information to young Black men and women, they immediately see how valuable it is and they’re into it.” A transplant saved Vernon-Brown’s life, she says, and she wants more people to recognize that they could help do that for someone else.
Making those connections is essential to the work Getfield is doing as part of CARM. “It needs to begin well before medical school. Children need to learn about the health sciences and what they could do for a career before they get to high school,” she says.
By that point, she says students are already making choices in their courses that will affect the path they take. Her hope is that with more Black people working on regenerative medicine, there will be future solutions to the problems currently facing the community. “Regenerative medicine is relatively unknown now, but for this to become a reality in the health of ACB communities, regenerative medicine must become a part of conversations in Black households and considerations in Black communities,” she says. “The conversations must begin now.”
Daniel Reale-Chin writes about technology for MaRS. Torstar, the parent company of the Toronto Star, has partnered with MaRS to highlight innovation in Canadian companies.
