Racism, cultural beliefs can affect organ donations in some communities: doctors

Reema Garcha, left, donated a kidney to her sister, Binn Johal, right, and advocates for others to also donate a kidney to someone who may otherwise be on a long wait list for the organ from a deceased donor. (THE CANADIAN PRESS/HO-Reema Garcha,)

VANCOUVER — A kidney-shaped cake will likely be on the menufor Reema Garcha and her family as they celebrate the six-year anniversary of her kidney donation to her older sister.

That's been the traditional dessert to mark Feb. 26, 2018, when the bond between Garcha, 46, and Binn Johal, 51, deepened through their shared experience as organ donor and recipient.

Johal's worsening autoimmune disease meant she needed a transplant. And when doctors suggested she ask someone to consider donating one of their kidneys, Garcha, her mom and brother were ready to help.

“I felt like I won the lottery when they told me I was a match,” Garcha said from Langley, B.C.

But many people in the South Asian community fear asking family and friends to donate a kidney, she said.

“Even though our cultural background is anchored to giving back and pride, I don't know if that comes across in being an organ donor.”

Years earlier, her mom's best friend needed a kidney but did not ask anyone to step up.

“I remember her telling my mom that she felt really insecure about asking family and friends. So she didn't. She ended up going on a wait-list and then eventually received the kidney, probably 10 years later,” Garcha said. “I think she didn't want to put her family and friends in a position to say 'yes' or 'no.' She just assumed that they would all say 'no.”'

Dr. JagbirGill, a nephrologist at St. Paul's Hospital in Vancouver, said South Asian Canadians have a 50 to 77 per cent lower likelihood of getting a kidney transplantdue to multiple reasons, including a lack of awareness about organ donation. However, they are more hesitant than Caucasians to ask relatives or friends to donate a kidney, he said.

Compared to waiting up to three years or longer for a kidney from a deceased donor, a kidney donated by a living person would improve a patient's quality of life quicker and last longer, said Gill. It may also eliminate the need for dialysis, which removes waste and extra fluid from blood once kidneys stop working properly, he added.

South Asians are among the populationsmore prone to kidney disease due toan increased riskof diabetes and high blood pressure, among other factors.

A project linked with the Health Canada-funded Organ Donation and Transplantation Collaborative is trying to improve equitable access to living donor kidney transplants among racialized groups in British Columbia and Ontario.

Gill has led a qualitative study in Vancouver through Providence Health Care to identify why South Asian patients typically do not approach loved ones about kidney donations. Dr. Istvan Mucsi, a nephrologist with University Health Network in Toronto, did similar research involvingAfrican, Black and Caribbean patients.

South Asian focus groups included people who received a transplant from a living or deceased donor, patients on a wait-list, those who donated a kidney and community members.

Many of them revealed that they hesitated approaching family or friends for a potential kidney donation because they worried about the donor's health cultural beliefs, Gill said.

For example, he said, “there was a concern that perhaps living donation may impact a young woman's marriage prospects.”

Recent immigrants face the additional hurdle of not having any family to approachin Canada, while language barriers also make it harder for some of themto navigate the health-care system, Gill said.

“All of the existing education materials we had were felt to be not necessarily culturally sensitive in terms of their approach.”

The research showed that online testimonials from patients and families, currently being developed in Hindi and Punjabi, would be an ideal way to create awareness about the benefits of a living donor transplant.Gill said the program is expected to be piloted in the summer before it's integrated into clinical practice and potentially used across Canada.

Key recommendations from focus groups included ongoing education and the need for health-care providers to develop formal relationships with South Asian community groups.

Unlike in Toronto, participants in Vancouver had positive views of the health-care system, with many highlighting cultural sensitivity shown by South Asian doctors.

Mucsi said a lack of African, Black and Caribbean physicians and nurses in Toronto meant patients in those communitieshad less trust in the system, which some viewed as racist due to “discriminatory microaggressions from individuals and institutions.”

“When patients are travelling through the transplant journey, which is a fairly complex and complicated one, they rarely see people who look like them,” Mucsi said.

“Transplant knowledge in the Black patient population is less than for whites but it may be also related to the fact that, because of trust issues, they simply cannot believe what is being taught to them because it's coming from a source that is not trustworthy.”

People of African ancestry have a greater risk of end-stage kidney disease due to genetic reasons and socioeconomic factors that can lead to other risks, such as obesity, said Mucsi, who leads the Kidney Health Education and Research Group at UHN.

He said the group is working with Black Health Alliance and researchers elsewhere to launch a website that includes the testimonials of African, Black and Caribbean patients and families.

Data from the Canadian Institute for Health Information shows that 3,777 Canadians were waiting for a solid organ transplant as of December 2022. Nearly three-quarters of them needed a kidney, but the data does not include information about the patients' race and ethnic background.

This report by The Canadian Press was first published Feb. 19, 2024.

Canadian Press health coverage receives support through a partnership with the Canadian Medical Association. CP is solely responsible for this content.