Black Canadians’ chances of getting kidney transplant hurt by race-based adjustment

Charles Cook has survived a stroke, a heart transplant, a kidney transplant and months in Toronto General Hospital. The 53-year-old knows he’s one of the lucky ones. But he worries that while waiting for his next new kidney, his luck will run out.

Cook is Black. And he is all too aware that means his chances of receiving a live donor kidney transplant — the preferred treatment for kidney failure — are half that of non-Black Canadians. Cook’s kidney failure was the result of post-operative complications that automatically placed him on the donor list. But he knows he will one day need another kidney and his good luck may change.

He’s reminded of it every time he gets blood tests back. Right there, among all the other values, is the adjustment for Black patients of a key kidney value, the glomerular filtration rate (eGFR).

That adjustment, which can be by up to 10 per cent, is based on outdated assumptions that Blacks on average have higher muscle mass, which assumes higher kidney function, according to Dr. Rulan Parekh, the kidney disease epidemiology chair at Women’s College Hospital and a professor at the University of Toronto.

That adjustment inflates estimates of kidney function. The measure is sometimes used to determine who is referred to a nephrology clinic and who isn’t, Parekh said. And that can delay diagnosis and reduce the chances of stopping kidney disease from worsening, including delaying eligibility for dialysis and transplant.

That adjustment leaves Black Canadians, along with Indigenous, African and Caribbean communities, with a lower likelihood of receiving a live donor kidney transplant, according to the Kidney Health and Education Research Group.

It’s why Cook is worried he and other Black Canadians won’t survive racial bias in health care. It’s why he wants Canada to eliminate the adjustment of kidney values for Black patients. An outspoken advocate and an adviser to the University Health Network’s ACB Organ Health advocacy group, Cook found support for his cause in a recent commentary in the Canadian Medical Association Journal.

The report calls for the removal of race-based adjustments in evaluating a patient’s kidney function. Parekh, one of the article’s authors, explains kidney disease has long been determined by calculating a patient’s kidney filtration rate, a good standard. Adjusting that by up to 10 per cent based on a patient’s skin colour is not a good standard.

Studies widely show that skin colour is not a good proxy for genetic differences, Parekh said.

“What makes somebody Black in North America?” she asked, noting that her own children, who are half Irish and half Indian, are often asked if they are Mexican. “It is truly a skin colour and not necessarily your ancestry.”

Having survived a cascading series of health crises over 35 years, Cook said he believes he has not been a victim of racial bias in his medical treatment so far. And he hopes his progress won’t some day be affected by a clinician’s view of his race.

Those 35 years have been one health crisis after another for Cook. He had to give up his dream of being a “Top Gun” pilot at 17 when he was diagnosed, while in the United States Naval Academy, with a heart condition called hypertrophic cardiomyopathy, which causes the heart muscle to become abnormally thick, making it harder for the heart to pump blood.

Then his life plans came to an even more abrupt halt when he suffered a stroke at 38. He needed a year in rehabilitation to overcome the physical and cognitive damage it caused.

Two years later, Cook moved to Canada with his then wife and their children. He underwent emergency surgery at Toronto General Hospital in 2015 to implant a left ventricular assist device — a mechanical pump — to support his heart.

“It saved my life, but it cost me my kidney function,” Cook said. “Everything that could have gone wrong did go wrong.” He “died twice on the table” that day and lost so much blood that his kidneys failed. He was in hospital for 100 days.

Just nine months later Cook received a heart transplant. He said he opened his eyes that next morning and remembered he was alive because he had someone else’s heart. “I started crying like a baby because I couldn’t think of anything I’ve done in my life that made me worthy to receive such a precious gift.”

Cook did not have to wait long for a new kidney because he suffered sudden loss of kidney function, not a gradual onset of disease, and his doctors put him on the transplant list immediately. In October 2017, he received a new kidney.

Cook’s positive outlook inspires other transplant patients he supports by sharing his story. He is pushing for Canada to eliminate the Black adjustment to eGFR to help keep other Black Canadians alive.

“It is concerning for me and others who look like me,” Cook said. “I want to help level the playing field for members of the African Caribbean and Black community.”

“Keep banging,” is Cook’s motto. We need to keep banging on the obstacle directly in front of us until we knock it down and then move onto the next one, he said. “Because there’s always going to be a next one. You just hang in there and keep banging.”

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