Jennen Johnson, then in her late 40s, knew her kidneys were failing due to lupus, but the gravity of her situation didn't hit home until she heard her prognosis outright: without a transplant, she would only live for another four years.
Knowing the average wait for a donor kidney could stretch to six years, Jennen, whose daughter, Tatianna, was then just 12, suddenly felt frozen with shock.
"I don't know what was said after that," she recalls.
The full emotional impact didn't finally strike until later that evening, when Jennen was telling her mother the news.
"I just broke down," she says.
Jennen was fortunate enough to be receiving care at UHN's Ajmera Transplant Centre, which boasts some of the best transplant outcomes in the world. But the fact that she is a member of the African, Caribbean and Black (ACB) community in Toronto put her at a distinct disadvantage to access her best available treatment option: a living donor kidney transplant.
According to research conducted at the Centre, people who identify as African, Caribbean and Black are half as likely as white patients to receive a living donor kidney transplant, even after accounting for medical and socio-demographic factors. The same is true for people who are South or East Asian.
Patients from these communities are less than half as likely to become living donor kidney recipients, compared to white patients, while they're less likely to give an organ, too. Worse yet, individuals from these racialized communities are at a greater risk of developing kidney failure, due to higher rates of high blood pressure, diabetes and certain inflammatory diseases, including lupus.
Why the disparity between non-white and white transplant patients? Research conducted by Dr. Istvan Mucsi, a transplant nephrologist with the Ajmera Transplant Centre's Kidney Transplant Program, and his colleagues has found that in some non-white communities, there's a distrust of healthcare institutions stemming from previous experiences with racism. There's also a culturally related reluctance to discuss personal health problems.
"There are a large number of factors that contribute to these differences, many of which have been around for a long time," he says.
The roots of racialized disparities
Prior to this work, "no comprehensive effort had been initiated to try and understand and address some of these inequities," Dr. Mucsi explains, so he and his team undertook the most comprehensive systematic research effort to date to do just that.
"In addition to analyzing data from about 1,700 patients transplanted at the Ajmera Transplant Centre, asking approximately 600 patients with kidney failure to complete standard questionnaires about their knowledge and attitudes toward living donor kidney transplant, we also designed a qualitative research project in engagement and partnership with a number of organizations from these communities," he says.
"The most advanced stage of this data collection is with the ACB communities, thanks to the collaboration with the Black Health Alliance."
The Black Health Alliance is a community-based charity aimed at improving the health and well-being of the 1.2 million Black people in Canada.
Lack of ACB representation in the medical and transplant communities and distrust in these institutions due to historic and present-day racism emerged as two leading themes in the research.
"Patients in some cases may delay going to the doctor or not seek care because they feel they may not be heard or receive the treatment they require," says Paula Neves, Lead for the Centre for Living Organ Donation at the Ajmera Transplant Centre, and a member of the research team.
Limited knowledge about transplantation in general and the safety of living kidney donation when strict selection protocols are followed also play a role, as do cultural factors.
For instance, Jennen Johnson was reluctant to tell anyone outside her immediate family that she had been diagnosed with lupus or kidney disease, much less ask people if they'd be willing to consider donating a kidney.
"For myself, with a Caribbean background, there's nothing wrong with sharing good news, but anything negative, sad or depressing, you keep within your household," she explains.
Consequently, awareness of the prevalence of kidney disease and possible treatments is low in these communities.
So is knowledge about organ transplant and trust in the systems behind it. For example, while Jennen's family members were all happy to be tested as possible donors, outside that circle, she ran into a wall. People mistakenly believed donating a kidney could shorten their lives or were reluctant to consider giving an organ to someone outside their family.
"Before this, I felt the exact same thing," Jennen says. "I did not sign that organ donor card, but I now know that it's so important."
Community collaboration
After identifying such barriers, Dr. Mucsi and his team again turned to the ACB community for help in finding solutions.
"Dr. Mucsi's research really places that emphasis on the people you're interviewing being the guiders of change," says Leslie Williams, a nurse practitioner with the Living Kidney Donation Program at the Ajmera Transplant Centre.
"Then it becomes a co-creation that both recipient and provider feel well-invested in."
Some world-leading initiatives that the team is currently working on include designing educational modules "about cultural safety, cultural humility and the impact of racism on health outcomes for nurses and physicians who work with kidneys," Dr. Mucsi says.
"We are planning to create clinics that will be more representative of the patient population they serve and also more responsive to their particular needs," he adds. One such clinic is currently being planned with the TAIBU Community Health Centre in Scarborough. TAIBU exclusively serves Black patients.
In addition, "we are working with Black professionals to deliver culturally safe and appropriate education and information about kidney disease, and provide culturally safe care for patients with kidney disease," Dr. Mucsi notes.
Creating content and resources
One of the groundbreaking developments Jennen is most excited about is a recently launched ACB Organ Health YouTube channel with content almost entirely created by living donors, transplant recipients and healthcare professionals from ACB communities.
Its purpose is to bring awareness of signs and symptoms and how to access timely care, and to provide education and resources to people who are either waiting for an organ or have already undergone a transplant.
As one of the hosts, "I'll be talking about health, nutrition and exercise," she says. The 30-minute show will include interviews with nutritionists, recipes and cooking segments demonstrating how to make lower-sodium, kidney-friendly versions of Caribbean dishes.
When Jennen started dialysis, she couldn't keep down favourite foods like fried dumplings or many others, including eggs, cucumbers and tomatoes.
"Faint smells, even pleasant aromas like food, made me terribly nauseous," she recalls. Nor could she enjoy mother-daughter ice cream dates any longer.
Unfortunately, none of Jennen's family members were medically suitable to donate, and making the "ask" for a living kidney donor can be incredibly difficult. For more than a year, her search yielded no results. Finally, in desperation, Jennan ran an ad in NOW magazine in 2018 outlining her situation, posting it to social media for good measure.
Shared and reshared by friends and family, it caught the eye of Christi Nolan, a self-employed yoga instructor who had once attended the same church as Jennen's cousin, Maggie. Christi offered to be tested and turned out to be a near-perfect match, and today, thanks to Nolan's generosity, Jennen has her life back.
Still bowled over by Nolan's transformative gift, Jennen is paying it forward by doing everything she can to raise awareness about organ transplant and the importance of living organ donation.
"If my journey makes a difference in someone's life, then everything I went through was worth it," she says.
