Fadia Jérôme-Smith
Fadia Jérôme-Smith, living kidney recipient, participated in virtual Living Donation Week. She shared her experience with the audience. (Image: Centre for Living Organ Donation, UHN)

Looking back at her journey as a living donor kidney transplant recipient, Fadia Jérôme-Smith remembers how important it was to have people from racialized communities be part of her care team – and how there is room for improvement in increasing representation in the healthcare system.

"Being in touch with someone who looks like you, sounds like you, can have a real impact in your healthcare," says Fadia, whose family is from Haiti. She still remembers fondly a nurse of Caribbean descent from her days in dialysis: "We understood each other at a different level.

"People from visible minorities, we always fear being misjudged and, in healthcare, that adds another layer as you are in a delicate position (as a patient)."

Barriers such as language, cultural differences, trust and representation have an impact in how healthcare is delivered, and that is particularly true with complex specialized treatment such as organ transplantation.

Access to living donor kidney transplant – a life-saving treatment for patients with kidney failure – is dramatically reduced among racialized groups in Canada, with studies reporting up to 70 per cent lower likelihood of living donor transplantation in South Asian, Black, African and Caribbean populations.

A.C.T.I.O.N., a joint project led by UHN's Centre for Living Organ Donation and Providence Healthcare in British Columbia, is taking a new approach to identify and reduce barriers to access to living donor kidney transplantation among these groups.

"It is very exciting and I believe a real opportunity to engage these communities and bring these barriers down," says Dr. Istvan Mucsi, a nephrologist at UHN's Soham & Shaila Ajmera Family Transplant Centre and co-principal investigator of A.C.T.I.O.N.

Dr. Mucsi's team has conducted interviews, focus groups and questionnaires with more than 500 participants, among transplant recipients, living kidney donors, family members and community partners. Similar work has been done by Dr. Jag Gill, Medical Director of Transplantation at St. Paul's Hospital in Vancouver and a clinician-scientist at the Providence Health Research Institute, who is also a co-principal investigator of A.C.T.I.O.N. Dr. Gill's work has focused on Indigenous and South Asian populations in B.C.

Dr. Mucsi and Dr. Gill participated in a panel to discuss the project and ways to improve access and equity in living kidney donation during Living Donation Week – a virtual education and celebration event organized in September by the Centre for Living Organ Donation.

They look forward to continuing to work with community partners to implement changes that will help improve access to this life-saving surgery across Canada.

Beyond language and culture barriers

According to preliminary results from the interviews and questionnaires, language and generational barriers are important issues, but there is a larger concern around trust and representation.

"We used to think that it was a matter of improving our transplant education materials, translating them to different languages and broadening distribution.

"It's now clear that's not enough," says Dr. Mucsi.

"We have to create a safe environment for these patients and their communities, where the information comes from sources they can trust," says Dr. Gill. "It may not be a one-size-fits-all solution, but we want to be mindful of each patient's unique perspective when building models of care for living kidney transplantation." 

Binn and Reema
Reema Garcha (R) donated a kidney to her sister Binn, in 2018. She believes sharing positive stories is an important step to increase access to living organ transplant among South Asian communities. (Photo: Courtesy Reema Garcha)

A living kidney donor of Indian descent, Reema Garcha is a patient partner of A.C.T.I.O.N. After donating her kidney to her sister, Binn Johal, in 2018, she became a volunteer with BC Transplant.

During events dedicated to promote organ donation within South Asian communities, Reema has seen first-hand how difficult it can be to debunk preconceptions around transplant. But she believes it is possible to connect with people and help them make informed decisions.

"In our community, honour is very important and saving a life by donating an organ can speak to that, to how it can give your life purpose," she says.

"I think we should share more success stories like mine and my sister's, as storytelling is a powerful tool to show people what living donation is about."

Collectively owned

The A.C.T.I.O.N. project is involving community partners to co-own the study and actively be a part in future interventions.

"We have a sit at the table to ensure the data is analyzed and published taking into account all the different perspectives," explains Lydia-Joi Marshall, a research associate and Vice President of the Black Health Alliance, a not-for-profit organization that strives to reduce health disparities in Canada.

With one foot in the traditional research world and another in community work, and also her personal experience as a black woman, Lydia-Joi has quite a unique perspective around advancing equitable access in healthcare.

"In research and in healthcare, we need to have the difficult conversations about how we have historically contributed to the mistrust from racialized communities," Lydia-Joi says.

"We have to make ourselves uncomfortable if we want to really address these issues and reduce these barriers."

Lydia-Joi says she feels cautiously optimistic, and happy to be part of this important conversation.

As a kidney transplant recipient, Fadia agrees:

"Change takes time, but we are channeling our passion and energy into something positive. We are planting the seeds so that eventually the system can be better for everyone."

Additional information

The A.C.T.I.O.N. project is funded by Health Canada. More information is available on the project's webpage on nefros.net.

Access and equity in living organ transplantation was the theme of this year's Living Donation Week, promoted in September by UHN's Centre for Living Organ Donation. In case you missed it, visit the Centre's YouTube page to see the presentations, webinars, forums and celebration events that were part of the week.

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