For more than 20 years, Black patients with serious kidney disease have had their kidney function test scores artificially and unjustifiably inflated – increased – with the specific intent to make Black patients’ kidneys appear as though they were stronger, more efficient, and healthier than the actual test results showed them to be.
The result? Tens of thousands of Black kidney patients have systematically been deprived of the chance to be placed on the kidney transplant list – and the chance to receive the healthy, new kidney that they badly need to improve, and save, their lives.
Almost certainly, some have died waiting for a healthy kidney, and all because a test score designed to reveal their true, dangerously weakened kidney function was obscured by artificial inflation, and was used to keep them off the kidney transplant list.
There have been other consequences of this practice, too, such as the delay in other forms of health care to these patients, and their difficulty in qualifying for health insurance coverage---because the artificially inflated test score made necessary health care appear unnecessary, and thus gave insurers the excuse they are always looking for to not pay for it.
Why did this happen? Because the patients are Black. Race discrimination. Plain and simple. There’s no sugar-coating this, and sugar-coating just masks the gravity and indecency of what has happened here.
More than 20 years ago, “scientists” assumed – just assumed, without evidence – that Black patients had more muscle mass than white patients, and therefore that it was okay to ignore higher levels of muscle-tissue waste products – a key marker of weakened kidney function – in Black patients’ kidneys. This was B.S. “science” from the start, but it was used to “justify” adding points to – artificially inflating – the test scores for the kidney function for Black patients.
And only for Black patients.
What happened here centers on an organization known as “UNOS”, which stands for United Network for Organ Sharing. UNOS is funded by American taxpayers. UNOS manages the national kidney transplant waiting list, matching donors to recipients.
Very important:UNOS is also responsible for making those policies that determine who is eligible to receive a donated kidney, and who is not. Until very recently, UNOS advocated use of the racially discriminatory, unjustified artificial inflation of kidney function test scores that operated to keep thousands of Black patients off the kidney transplant list.
To appreciate the magnitude of what’s happened here, it’s important to understand that Black Americans are more than three times as likely to suffer kidney failure compared to White Americans. Black Americans are at higher risk for maladies such as high blood pressure, obesity, diabetes, and heart disease, each of which increases the likelihood of suffering kidney disease.
However, despite being overrepresented when it comes to kidney disease, Black Americans have been less likely than White Americans to actually receive a kidney transplant. In other words, Black Americans are more likely to need a kidney transplant, but less likely to get one. And the unjustified inflation of their kidney function test scores is a large part of the reason.
Kidney function (i.e., how effectively kidneys filter waste from blood) is measured by a “glomerular filtration rate” test, commonly referred to as eGFR. A patient’s eGFR score is used to determine when the patient is eligible to begin accruing wait time on the national kidney waitlist, with the score needing to fall below 20 ml/min to qualify a patient to begin accruing wait time.
For more than two decades, UNOS used a race-based “coefficient” (i.e., a factor based solely on race) to artificially inflate observed kidney function (eGFR) scores for Black kidney disease patients.
The race-based “coefficient” delayed Black kidney disease patients from being added to the kidney transplant waitlist and resulted in Black candidates waiting much longer for kidney transplants than similarly situated non-Black candidates.
To emphasize the extraordinarily damaging impact of this unjustified, unscientific eGFR test score inflation for Black patients, a study published in eClinicalMedicine estimated that the effect of removing this inflation would result in:
31,000!
These are the victims of race discrimination based on a scientifically unsupported racial stereotype.
UNOS and many in the health care industry seemed quite content to continue to endorse and use this racially discriminatory test score inflation. They either didn’t care about the massive unfairness and injury it caused, or just didn’t care enough to ask the question. But they didn’t count on the guts, brains and decency of Dr. Nwamaka Eneanya, from the Perelman School of Medicine, and other colleagues who couldn’t abide this race discrimination. Dr. Eneanya lobbied extensively for the elimination of the test score inflation. Also, in 2019, she published a paper in the Journal of the American Medical Association, which shone a bright, national spotlight on this disgrace, and made it something that UNOS and organized medicine could no longer ignore.
UNOS had been outed.
In June of 2022, after the discrimination was exposed, UNOS was forced to admit its impact on Black Americans. On its website, UNOS said:
For a number of years, some eGFR calculations have included a modifier for patients identified as Black. This practice has led to a systemic underestimation of kidney disease severity for many Black patients. Specifically in organ transplantation, it may have negatively affected the timing of transplant listing or the date at which candidates qualify to begin waiting time for a transplant. (my emphasis)
Then, in January 2023, more admissions spilled out of UNOS, as it acknowledged “the use of a race-based calculation that has unfairly delayed care for many Black patients with kidney failure.” (my emphasis)
In that same published statement, UNOS also quoted Precious McGowan – a kidney transplant recipient herself, who serves on the Kidney Transplantation Committee – who used these damning words to describe the impact of the race discrimination that UNOS had endorsed:
“So many African-Americans have been affected by the use of the race-inclusive calculations [i.e., the artificially inflated eGFR test scores], and have become very ill or have died waiting for the opportunity to list for a kidney transplant.” (my emphasis)
“Had become very ill or died waiting”. For a kidney. Because they were Black. How shameful.
Dr. Lou Hart, Assistant Professor of Pediatrics (Hospital Medicine), and Medical Director of Health Equity, New Haven Health System, sadly expressed the damage this practice has done. Hart says it is “sickening to see the impact of this racialized equation and how it denies access to the very same patients who are most likely to need comprehensive kidney care. In the United States, African Americans are four times more likely to develop kidney failure than white patients, yet this racially biased eGFR equation makes Black patients’ kidneys look ‘healthier’ for longer.”
The architects of this race discrimination – and those who promoted it and benefitted by it, and those who ignored it while others suffered – must now be held accountable for the damage they have done.
If you believe you may have been the victim of the kind of race discrimination described here, and suffered because of it, please contact us. We will investigate the facts of your situation, and help you understand whether filing a legal claim is right for you.
Photo by Hannah Barata
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