30% Margin of Error
Would you board an airplane if you knew there was a 30% chance it would crash? Most people would not take the chance. In fact, there would be a public outcry for overhauling the entire aviation manufacturing industry because the risk to human life would be far too significant. What happens when we replace airplanes with Black people’s kidneys, and there’s a 30% margin of error in a critical test used to determine their place on the kidney transplant list?
In the 90s, doctors, researchers, and policymakers underwent the task of developing a standardized equation that would become a monumental marker in determining one's kidney function. The results became known as a GFR or glomerular filtration rate, a staple in Nephrology (Kidney health medical discipline) that measures how well the kidneys work. However, kidney function in Black patients would be measured by the e(stimated) GFR. This race-based calculation would overestimate their kidney function and subsequently delay their access to the kidney transplant list and life-sustaining treatments such as dialysis simply because of racial bias in the medical system.
For context, with the standard GFR, scores of 120-90 indicate normal kidney function. 89-60 indicates early kidney disease. 59-16 indicates kidney disease, and 15-0 means kidney failure. For Black patients testing with the race-based calculation, their eGFR could be estimated anywhere from 10-20 points higher than the GFR. During clinical trials for the GFR/eGFR, researchers saw that Black patients routinely tested higher in kidney function than other groups and, without much further investigation, concluded that their race must be the cause. Their results came with the disclaimer that there was a 30% margin of error. Yet, it was still hailed as the standard for decades.
It is estimated that hundreds of thousands of Black patients have been affected by the eGFR, myself included. I was diagnosed with Stage 3 Chronic Kidney Disease caused by Focal segmental glomerulosclerosis, or FSGS, when I was 17 years old. My family has no history of this condition. As far as I know, I am the only one. My Kidney health declined into failure in 2019 when my eGFR estimated my kidney function at 15%, making me eligible to be listed on the Kidney Transplant list and start Peritoneal Dialysis. In 2023, I received a letter in the mail that The United Network for Organ Sharing, UNOS, and The Organ Percument and Transplant Network mandated all U.S. Kidney Transplant programs to recalculate their Black patients’ evaluations and medical labs could not use the eGFR equations since it was found to be racially biased. As a result, it was concluded that I should have been listed on the transplant list in 2015, not 2019. I was first diagnosed in 2012.
(Editors Note: Though the eGFR has essentially been eradicated, there are reports of transplant centers and labs still using the biased equation.)
As a doctoral candidate, my research had a primary focus on medical racism and healthcare policy. I knew this issue was an embedded aspect of the medical system, but to be forced to reconcile it with my own experience was sobering. I thought about the women at my childhood church who were battling or even died waiting for a kidney transplant. The patients I met during my journey who lost hope and stopped dialysis to expire on their terms. Finally, this flawed system is working towards more equitable solutions to provide adequate care for the most harmed patients. In 2023, over 14,000 Black patients received adjusted GFR scores. Many were given the transplants and treatments they waited years for, and the number continues to grow.
Recently, I had the unique opportunity to talk with someone involved in developing the eGFR. He asked what was the cost of race-based testing. I responded lives and the integrity of the healthcare system. He later pulled me aside and told me I had accused him and his work on the eGFR of lazy research, which I and dozens of medical professionals and organizations have. I asked if he could explain the overestimation of kidney function in Black patients. Instead of acknowledging the racial issue, he told me that they advised there was a "30% margin of error" with the eGFR and that the new equation still has "critical errors, but those errors are accepted because some people are happy with the error because they benefit from it."
How can a study with a 30% margin of error become a standard in the transplant evaluation process? How many lives were lost due to 30% and ill-informed research? How could he say such things to a survivor of the eGFR like it was okay? As academic researchers, we are taught that when confronted with new information, it is okay to pivot and correct ourselves, especially when our work influences the quality of life of other people. I don't doubt that medical researchers had less information about racial-based medicine than we do now, but to hold on to the validity of debunked research in 2024 should not be allowed. I do not contest that the standard GFR isn’t a perfect evaluation but the elimination of the racial barrier does ensure that kidney disease patients can be evaluated on an equal scale, not a racial hierarchy. I often wonder how this updated protocol would have impacted the countless lives affected by the race-based calculations. For me, it changed my life in a matter of months. Many people aren’t here to know.
Bias of any kind has no place within a system that was built on the oath to "do no harm." As patients, we must remain vigilant and exercise our agency inside and outside doctor's offices. Physicians and care providers must re-educate themselves on the history of racial bias in the medical system and actively do the work to see the whole patient- not just their skin color. Medical researchers and policymakers must ensure their work advances more equitable outcomes. If not, we will continue to pay the cost of the 30% margin of error.