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.


Wait Till You See My eGFR!

I hate to brag (no, actually, I’m proud of it!), but today I had my best creatinine and eGFR test results since I donated my kidney to my son 14 years ago. Creatinine reflects the amount of toxins in the blood (lower is obviously better), and GFR is an overall measure of kidney function (the clinical term is glomerular filtration rate). The little “e” before GFR just means estimated. The exact measure requires a 24-hour urine collection, which I vividly remember doing for my donor evaluation.

For the estimate, they use a formula based on creatinine, age, sex, and a few other factors. My creatinine is 0.75 (normal is under 1.00 for females, and mine’s been under 1.00 for about the past 5 years but never this good)! My eGFR is 80 (normal is over 60). To give you an idea, kidney failure–meaning the imminent need for dialysis or transplant–is below 15.

Given that it’s natural for kidney function to decrease as we age, at 72 years old, I would expect mine to be lower. Plus, as a living donor, there’s no cause for concern even if it’s slightly under 60 (categorized technically as “stage 3 of kidney disease”).

Those stages are based on people with two kidneys and/or patients who are continually losing kidney function. So, I wasn’t at all concerned a few years back when my eGFR was 59 but my creatinine was under 1.00.

And now 0.75! So, if you or anyone you know is worried about living donors’ losing too much kidney function, please tell them about my results. (And, no, I don’t have a water bottle attached to me all day, though I’m not knocking those who do.)

Donors, Your New-Normal Numbers Don’t = Kidney Disease!

I always tell potential kidney donors to keep an open mind but to do their homework and be as well informed about living donation as they can be. Turns out that that advice even applies years later.

Through social media donor support groups, I recently was stunned and outraged to learn that some donors have been told that they have stage 3 chronic kidney disease. One donor said she cried all night. Before you conclude that their “disease” is a result of kidney donation, I hasten to add that these were people with normal kidney function. In other words, as researchers have demonstrated, those living donors DO NOT HAVE CHRONIC KIDNEY DISEASE! Their slightly low readings are perfectly normal for them.

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Apparently, their primary care providers—and, unbelievably, sometimes even nephrologists—were referring to the eGFR (estimated glomerular filtration rate) scale based on people with two kidneys and/or real kidney disease. Donors lose 25 to 35% of their pre-donation kidney function, but that’s still sufficient to lead a healthy normal life. It’s meaningless and patently wrong to look at the numbers in a vacuum and say that these people have chronic kidney disease.

As we get older, no matter how many kidneys we have, our kidney function declines. It’s especially common for people over 70, like me, to have a slightly low eGFR. At my last check-up, though, 13 years after donating my kidney to my son, my eGFR was 69 (normal is over 60).

So, if you are a kidney donor, don’t be alarmed at news of a slightly high eGFR. Ask questions (how long has it been in that range? what’s your creatinine?), and always remind your provider that you have one kidney. You may well be relieved to know that your new normal is just fine!