For the thousands of Canadians experiencing end-stage kidney disease, a new kidney would mean a new lease on life. Kidney transplantation started in the 1950s and became routine in the 1960s. Toronto General Hospital, home to Canada’s largest kidney transplant program, has done over 5,000 kidney transplants since 1966, 1,600 of which were from live donors.
Of the options available to patients experiencing end-stage kidney disease, a living donor kidney transplant (LDKT) is the preferred treatment option for eligible patients from a clinical perspective, with a pre-emptive live donor transplant being ideal. LDKT is preferred for a few reasons.
For starters, LDKT offers improved survival than dialysis and lasts longer than a deceased donor organ. It also results in significant improvements in quality of life. Finally, LDKT offers a large cost savings to the health care system; the benefits of a single kidney transplant have been valued at $2.7 million.
Yet, in Canada – where we pride ourselves on our universal healthcare – access to LDKT is dramatically reduced for members of racialized groups; according to multiple studies, South Asian, East Asian, Indigenous, and African, Caribbean and Black (ACB) patients with end-stage kidney disease have a 50-70 per cent lower likelihood of receiving LDKT compared to white patients.
The numbers tell us that something must be done – such a disparity seems “un-Canadian”. But what the numbers don’t tell us is how to address healthcare inequities in the context of their social and systemic origins.
“In academia, there’s a very specific process and lens from which we investigate things,” explains Lydia-Joi Marshall, Board Member of the Black Health Alliance (BHA). “But that lens misses out on the personal conversations. When I stepped outside my research bubble and saw the front-line work – social work, community lead work – I realized that that type of work is actually more in touch with what’s happening. Having those conversations made me realize that those are the voices that need to be heard more in all institutions.”
In 2019, the Kidney Health and Education Research Group (KHERG), founded by Dr. Istvan Mucsi, Transplant Nephrologist at UHN, reached out to BHA to jointly understand inequities in accessing LDKT among the black community and start finding answers – an opportunity seized by Marshall.
Mucsi began his nephrology career in Hungary, where he and his wife (co-founder of KHERG) had studied socio-ethno-racial issues in the Roma population and non-medical determinants of access to kidney transplantation. Since assuming his position at the Soham & Shaila Ajmera Family Transplant Centre at UHN (formerly UHN’s Multi-Organ Transplant Program), LDKT has become one of his research priorities.
“In talking to my colleagues, anecdotal evidence indicated that racialized communities may face barriers in accessing living donor kidney transplant,” says Mucsi. “And this was true even in the pediatric population – children with Asian backgrounds in particular seemed to have more difficulty securing a living donor compared to white children.”
In its focus on ethno-cultural barriers, KHERG developed an observational, mixed methods study to assess ethno-cultural barrier in access to LDKT, to understand the why, and to start designing steps that could amend any potentially modifiable factors.
Late in 2019, KHERG, in partnership with the Centre for Living Organ Donation at UHN and Providence Health Care Research Institute at Providence Health Care in Vancouver received a grant from Health Canada to launch the A.C.T.I.O.N. Project (Improving Access to Living Donor Kidney Transplantation in Ethno-racial Minority Communities in Canada).
This 2.5 year project emphasizes the importance of community leadership and patient experience to address barriers in kidney health, transplantation and living organ donation. Down the road, it will serve as a transferable model for understanding and addressing inequitable access to healthcare in the context of chronic illness.
“Knowing that this project is going to be community-led and driven by patients and families is way more interesting than just collecting numbers and data,” says Marshall. “We already know what the data says. What does it mean? It’s not enough to state the obvious. We already know that a disparity exists. Why is there a disparity and what is causing it? There’s so much valuable information outside the academic, peer reviewed world. I want that information to be brought to the surface and to inform how we do healthcare and how we interact.”
Both Mucsi and Marshall are quick to point out that A.C.T.I.O.N. relies on confronting entrenched socio-cultural assumptions about race and health care. “Biases, privileges, and inequities frequently go unrecognized,” says Mucsi. “They need to be unearthed and discussed openly. It’s a sensitive topic but it must be done.”
A.C.T.I.O.N. is rolling out in three phases. Phase one focuses on community engagement along with focus groups and interviews to understand the barriers that affect access to healthcare in general, as well as LDKT specific experiences. Phase two is an assessment of ingrained biases of the system and the development of tools and materials for community, patients, and healthcare practitioners. Finally, phase three includes a community-facilitated implementation pilot and evaluation of tailored tools and care interventions
Mucsi and Marshall view A.C.T.I.O.N. as a first step to addressing healthcare inequities for racialized groups in Canada.
“Right now, people aren’t open to stepping back from their academic lens and studying things in the context that communities are presenting,” says Marshall. “It’s not to say we don’t need academia, but there are other ways to learn. Why can’t we expand what it means to learn, expand what it means to be professional, and accept that there will always be narratives outside of our own.”
“Out of this project, I would like to challenge the idea that the only ‘expert’ is the individual with the academic experience and be able to say that there’s a more holistic way of looking at health. Yes, some expertise is taught but there are other aspects that lead to wellness that we need to incorporate in a tangible way. I want to challenge people to realize what biases they come with, what restraints they are under. Let’s break the mold of how we think.”
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