Righting Another Race-Based Handicap at Last

Critical wait times on national lists for a kidney–typically several years long–are finally being adjusted to make them more accurate and fair to African Americans. This move is all the more important because black people in the United States are nearly four times as likely as whites to have kidney failure.

I don’t think most people realize that until recently when you got your kidney-function blood test results, the same creatinine reading (level of waste products) was rated differently if you were African American. Let me illustrate with my own test results. A couple of years ago my blood tests showed a creatinine of 0.94 (higher than my usual since my donation but still fine for one kidney). Beneath the 0.94 was my eGFR (“estimated glomerular filtration rate,” or kidney function): 60. The 60 is just on the cusp of normal. Of course, as a white person, I was looking at the line that read “non-African American female.”

If I had looked instead at the next line–African American female–I’d have seen a 70 (completely normal). Note: same level of creatinine.

When the levels are lower, the differences can have serious ramifications for treatment approach because these are the numbers that categorize stage of chronic kidney disease. Ultimately, below 15 denotes kidney failure, meaning an imminent need for either dialysis or kidney transplant.

The eGFR formula had been in place in the United States since the nineties, based on a few characteristics, including muscle mass. Fortunately, in 2021, after the National Kidney Foundation and the American Society of Nephrology got together to look at the use of race in these calculations, their task force announced a new race-free calculation. Now GFR readings differ only by male and female.

Just think about the implications. The point at which someone is put on a transplant wait list, and their priority on that list, is based on numerous factors, including GFR. If patient A is listed with a higher kidney function–that is, seemingly less sick–despite the same creatinine, that naturally affects their wait time.

Now, as of January 5, 2023, in “an unprecedented move to correct racial inequity in access to kidney transplants,” all U.S. transplant centers are required to review their lists to see which black patients were listed based on the old, race-based formula, according to yesterday’s article in USA Today.

“It’s a restorative justice project in medicine,” said Dr. Martha Pavlakis, nephrologist and kidney transplantation committee chair at the Organ Procurement and Transplantation Network, which develops policies for transplant centers.

Given that the overall wait for a kidney is already tragically long (5 to 10 years or more), anything that unfairly misinterprets a patient’s kidney function has life-and-death consequences. These race-based formulas for interpreting kidney function have clearly contributed to the shamefully longer waits for African Americans, who make up about 35 percent of people on the wait lists (but only 13 percent of the U.S. population).

This is huge news for African Americans and for everyone concerned about health care inequities.

For related posts, resources, and information on my new book, The Insider’s Guide to Living Kidney Donation, be sure to explore the rest of my website.


National Kidney Month and National Women’s Month

Yes, March is National Kidney Month and National Women’s Month. What do kidneys and women have in common, you ask? Both groups are underappreciated! We can hope that someday we will get to a point where we don’t need to introduce people to integral aspects of our culture and our history (like Black History Month). For now, though, we obviously do. And this month we highlight the critically important role women play in our society. Similarly, we highlight the critically important role the kidneys play in our body.

Do you know what your kidney function is? You may think you know what women contribute to daily life, but do you know what kidneys do? For starters, they remove dangerous toxins from the blood, regulate the amount of fluids in our body, maintain the salt content of those fluids, balance minerals, produce urine, promote bone health, and so much more.

I’ve had a healthy respect for kidneys ever since my son was in dialysis. For nearly 2 years, dialysis machines, doctors, nurses, and technicians did a masterful job of trying to approximate what healthy kidneys manage to do every day.

Yet even with doing their damndest to get this juggling act all right, dialysis could produce only about 20% of normal kidney function. One-fifth.

Like women, kidneys pull off much of their heroic daily work quietly, often without calling attention to themselves. That’s why when kidneys are starting to fail, we usually don’t notice. About 30 million Americans have chronic kidney disease—meaning they’re gradually losing kidney function—and most of them don’t know it. It’s called “the silent killer” because people usually don’t feel sick (and often look fine) until it’s dangerously far along. I know of people who just had a routine screening at a health fair, or went to the ER for a broken arm, or just didn’t feel right—only to learn, to their shock, that their kidneys were failing significantly and they needed to start dialysis ASAP.

My son knew he had kidney disease ever since it was diagnosed following a strep infection when he was in college. He was otherwise healthy and was told to monitor the condition with routine blood tests, which he did, never showing or feeling any symptoms. It was only at a routine checkup soon after his college graduation that the tests showed a precipitous decline in his kidney function. Within a month he was having surgery to put in an access point for dialysis, in 3 months he was undergoing dialysis 3 days a week, and close to 2 years later, he was welcoming my left kidney into its new home. It’s lived there happily since 2006, by the way. (My right kidney is managing fine without it.)

So, this month, please make an appointment to have your kidney function checked with a simple blood test. (And be sure to thank a woman every day!)