Kidney Experts Say It’s Time to Remove Race From Medical AlgorithmsDoing So Is Complicated | The Crusader Newspaper Group – The Chicago Cusader

By Rae Ellen Bichell andCara Anthony

Part II of II

Many patients dont know about this equation and how their race has factored into their care.

I really wish someone would have mentioned it, Harried said.

He said it burned him up knowing that this one little test that I didnt know anything about could keep me from or prolong me getting a kidney.

GlendaV.Robertscurbed her kidney disease with a vegan diet and by conducting meetings as an IT executive while walking.

But after more than 40 years of slow decline, her kidney function finally reached the cutoff required to get on the transplant waitlist.

When it did, the decline was swift a patternresearchers have noted in Black patients. It really makes you wonder what the benefit is of having an equation that will cause people who look like me Black people to get referrals later, to have to wait longer before you can get on the transplant list, but then have your disease progress more rapidly, she said.

Roberts, who is now the director of external relations at the University of Washingtons Kidney Research Institute in Seattle and on the national task force, said a genetic test added to her feeling that a Black/non-Black option in an equation was a charade.

In fact, I am not predominantly of African ancestry. Im 25% Native American. Im Swedish and English and French, said Roberts. But I am also 48% from countries that are on the continent of Africa.

The Black/non-Black question also doesnt make sense to Delgado, the University of California nephrologist. I would probably for some people qualify as being non-Black, said Delgado, who is Puerto Rican. But for others, I would qualify as Black.

So, theoretically, if Delgado were to visit two doctors on the same day, and they guessed her race instead of asking, she could come away with two different readings of how well her kidneys are working.

Researchers found that the race factor doesnt work for Black Europeans or patients inWest Africa. Australian researchersfound usingthe race coefficient led them to overestimate the kidney function of Indigenous Australians.

But in the U.S., Levey and other researchersseeking to replacethe race option with physical measurements, such as height and weight, hit a dead end.

To Crews, the Johns Hopkins nephrologist who is also on the national taskforce, the focus on one equation is myopic.

The algorithm suggests that something about Black peoples bodies affects their kidneys.

Crews thinks thats the wrong approach to addressing disparities: The issue is not whats unique about the inner workings of Black bodies, but instead whats going on around them.

I really wish we could measure that instead of using race as a variable in the estimating equations, shesaidon the Freely Filtered podcast. I dont think its ancestry. I dont think its muscle mass.

It might not be that Black bodies are more likely to have more creatinine in the blood, but that Americans who experiencehousing insecurityand barriersto healthy food, quality medical care and timely referrals are more likely to have creatinine in their blood and that many of themhappen to be Black.

Systemic health disparities help explain why Black patients have unusually high rates of kidney failure, since communities of color have less access to regular primary care.

One of the most serious consequences of poorly controlled diabetes and hypertension is failure of the organ.

Direct discrimination intentional or not from providers may also affect outcomes, said Roberts. She recalled a social worker categorizing her as unable to afford the post-transplant drugs required to keep a transplanted organ healthy, which could have delayed her getting a new organ. Roberts has held executive roles at several multimillion-dollar companies.

Delgado and Levey agree that removing race from the formula might feel better on the surface, but it isnt clear the move would actually help people.

Studies recently published in the Journal of the American Medical Association and theJournal of the American Society of Nephrology noted that removing the race factor could lead to some Black patients being disqualified from using beneficial medications because their kidneys might appear unable to handle them. It could also disqualify some Black people from donating a kidney.

Fiddling with the algorithms is an imperfect way to achieve equity, Levey said.

As researchers debate the math problem and broader societal ones, patients such as Harried, the St. Louis minister and security guard, are still stuck navigating dialysis.

One of things that keeps me going is knowing that soon they may call me for a kidney, Harried said.

He doesnt know how long his name will be on the transplant waitlist or whether the race coefficient has prolonged the wait but he keeps a hospital bag under his bed to be ready.

Rae Ellen Bichell and Cara Anthony are both correspondents for Kaiser Health News. This story was produced byKaiser Health News, an editorially independent program of theKaiser Family Foundation.

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Kidney Experts Say It's Time to Remove Race From Medical AlgorithmsDoing So Is Complicated | The Crusader Newspaper Group - The Chicago Cusader