By Catherine Danko
As a Caribbean woman who received a living kidney from a stranger, Jennen Johnson recognizes the importance of telling her story.
Diagnosed with kidney failure in her early 40s, Jennen put an advertisement in a newspaper for a donor after being told it would take nearly six years on the wait list for a kidney. When she received the call from a woman offering to donate, it meant that Jennen was on track to receive the best treatment for kidney failure – one from a living donor.
“When I found out she was a match, I was just over the moon,” says Jennen, recalling the joyous moment when she received the call from Toronto General Hospital (TGH).
Thanks to TGH’s surgical team her transplant was a success, but Jennen knew her experience with living organ transplantation was not one commonly shared amongst patients from African, Caribbean and Black (ACB) communities, something she attributes to mistrust in the health care system.
“When it comes to living organ donation, the Black community shies away from it because they feel if they’re in trouble and a white person is in trouble, (health care professionals) are going to save the white person,” says Jennen, who is a member of UHN’s ACB Organ Health YouTube Channel Advisory Committee, which aims to provide informative and trusted video content and resources for ACB patients, caregivers, clinicians and communities.
Living kidney donation is the fastest access to a kidney transplant for someone in need and may offer a quicker recovery and longer functioning than a deceased donor kidney. It also results in significant improvements in quality of life and productivity of people living with kidney failure.
Despite this, there are not enough living donors to meet the demand.
Access to living donor kidney transplant is even more reduced among racialized groups in Canada, with studies reporting up to 70 per cent lower likelihood of living donor transplantation for patients from South and East Asian, African, Caribbean and Black populations.
Barriers to transplantation and any type of health care might include language, cultural differences, experiences with racism and discrimination, less knowledge about the specific treatment and underrepresentation of different racialized groups among health care professionals, especially among physicians.
Dr. Istvan Mucsi, a transplant nephrologist at UHN’s Kidney Transplant Clinic, and his team, in collaboration with Dr. Jagbir Gill and his team in Vancouver, have been working to help ACB and South Asian populations reduce inequities in access to living kidney donation and transplantation in Ontario and British Columbia.
Together with patient and community partners, they formed the A.C.T.I.O.N project – Improving Access to Living Donor Kidney Transplantation (LDKT) in Ethno-racial Minority Communication in Canada – which was funded by Health Canada in 2019. Dr. Mucsi and his team have systematically identified gaps and barriers that may prevent patients with kidney failure who are from racialized communities accessing living donor kidney transplantation.
“Our outreach seeks to address the suspicion and mistrust that ACB communities have towards the health care system with the objective of starting a dialogue between the communities – the research community, clinical community and ACB communities,” says Dr. Mucsi.
Currently, the A.C.T.I.O.N. project is running multiple ACB Health fairs, which focus on regenerative medicine – replacing organs and tissues damaged by diseases, injury, age or other issues. The fairs also address kidney and organ health, organ failure related issues, including diabetes, high-blood pressure and heart diseases, all of which may contribute to higher rates of kidney disease.
“Our community engagement is essentially about creating a more trusting health care environment, collaborating with researchers from ACB communities and building a team that is diverse and representative,” says Dr. Mucsi.
“We are creating a network that can mobilize culturally responsive knowledge about kidney health and other relevant chronic medical conditions, and to create a culturally safe environment for patients with kidney failure to discuss and consider kidney health, kidney disease and living donation.”
Jennen now uses her story to advocate for living organ donation in ACB communities across Canada – those who are amongst other racialized groups where access to living donor kidney transplantation is most needed, but the need is not met.
“We create content to show what really happens when you donate an organ,” says Jennen, who says that issues surrounding representation among medical professionals are at the core of why Black populations are most unlikely to engage with donation, either on the donor or the recipient side.
For example, Jennen says that some might hold the mistaken belief that a kidney or organ from a white person would not function in replacement of a kidney in a racialized person and vice versa – the same assumption may be held with blood transfusion.
“Our dialogue can help Black communities say, ‘hey, maybe the information that I’ve had all this time isn’t right, because this person from our community had a transplant and they’re perfectly fine,” says Jennen, who is living proof.
“Being a living organ donor and receiving a living donation is important because it could save your life, it could save your family member’s life,” she says.
No one ever changed the world on their own but when the bright minds at UHN work together with donors we can redefine the world of health care together.