Uchenna Ndubisi was blown away when she first noticed the “African American” notation on a diagnostic test designed to show doctors how well her kidneys are working.
What did her race have to do with the toll Lupus was taking on her body? The answer left her more resigned than surprised: an equation used to estimate how well a person’s organs filter waste included a decades-old racist assumption about Black bodies.
In this case, clinicians assumed Ndubisi had more muscle mass than a White patient would. For many Black kidney patients, like Ndubisi, the equation overestimates how well their kidneys are functioning, leading to the loss of critical time for necessary treatment.
“It’s being Black in America,” said Ndubisi, 35, who lives in Prince George’s County. “Another reminder ... that there’s hurdles into health care for African Americans in this country.”
Race-based algorithms have been used for decades to diagnose and decide treatment plans for kidney disease, lung disease, pregnancy and even dementia. Researchers looking at racial health disparities are now exploring how and when race is used in diagnostic tests — if they are warranted — and how they play a role in access to care and treatment.
The University of Maryland Medical System and the University of Maryland School of Medicine plan to announce Wednesday that they will stop using the race-based diagnostic equation to estimate kidney function.
Advocates say the race-based equation in kidney disease is a likely factor in Black patients qualifying for transplantations later than they should.
About 720,000 Black patients in the United States might be treated earlier for kidney disease if race is removed from the calculations of kidney function, according to researchers.
In the Mid-Atlantic region, thousands of people could be impacted by the change. The University of Maryland Medical System does not have an estimate of how many of their patients could possibly now qualify for transplantations.
The decision by the medical system and school follows a recommendation in September by a task force formed by the National Kidney Foundation and the American Society of Nephrology to reassess the use of race in diagnosing kidney disease. The panel recommended that all laboratories and health-care systems across the country adopt a race-free approach.
The current equation, which has been used since the late 1990s, relies on levels of creatinine — a byproduct of muscle and protein metabolism — from the blood. The calculation factors in age, gender and whether a patient is “African American or non-African American.”
“When the race modifier was included it would appear your kidney function was better,” Susan Quaggin, president of the American Society of Nephrology, said in an interview. “You would be listed later for a kidney transplant.”
With the decision, the University of Maryland Medical System is joining a small, but growing, number of health systems and medical schools across the country, including the University of Washington, Mass General Brigham and Penn Medicine, to take a step that advocates say will promote health equity.
Stephen Seliger, a nephrologist at the University of Maryland Medical Center and an associate professor at the University of Maryland School of Medicine, is working with a group to implement the change within the medical system. The new formula will go into effect in January.
Seliger said he wants to ensure that the change does not have unintended consequences.
“We are working expeditiously, but responsibly, to take race out of the equation,” he said.
Some research has questioned whether removing race could result in some patients not getting necessary medicines because their tests show their kidneys can’t handle them.
The initial move across the country to change the formula was initially sparked about five years ago by medical students who raised questions about using race in medical tests and the influence it can have on a patient’s treatment.
Paul Palevsky, president of the National Kidney Foundation, said the inclusion of race sends a “wrong message.”
“Race is a social construct, it is not a biological determinant of health or disease,” he said.
Last year after the murder of George Floyd by a White police officer and a pandemic in which Black residents were more likely than White residents to contract covid-19 and die as a result, several hospitals took steps to remove the race-based algorithms for kidney disease, acknowledging its role in delaying access to kidney transplants.
The National Kidney Foundation and the American Society of Nephrology formed a task force to reassess the use of race in diagnosing kidney disease, and about two months ago the panel recommended that all laboratories and health-care systems across the country adopt a race-free approach.
While they are not keeping track of the hospital systems that are making the change, the National Kidney Foundation is working with some of the larger diagnostic laboratories to implement it.
Mohan Suntha, the president and chief executive of UMMS, said the system, based in a state with a 30 percent Black population, is committed to racial health disparities. The recent decision by the board of directors earlier this month is one of the first steps in looking at race-based calculations and their impact on treatment.
“We are in a period of evolution toward truly understanding the scope and impact of race-based disparities in health care and taking steps to address inequities,” he said.
Diagnostic tests that make adjustments for race have gained the attention of Congress.
Last year U.S. Sens. Elizabeth Warren, D-Mass., Ron Wyden, D-Ore., and Cory Booker, D-N.J., and Rep. Barbara Lee, D-Calif., wrote a letter to the Agency for Healthcare Research and Quality asking for a review of race-based algorithms.
“In order to reduce health disparities among communities of color, we must ensure that medicine and public health organizations take a staunchly anti-racist approach to medical care and reevaluate the ways in which current practices, including the use of race-based algorithms, could be worsening outcomes for people of color,” the lawmakers wrote.
The Agency for Healthcare Research and Quality launched a study in February and is planning a report that will examine how health-care algorithms can introduce racial or ethnic bias into health care explicitly or implicitly, and examine how they affect racial and ethnic disparities in access to care, the quality of care and health outcomes.
The use of race-based algorithms has also attracted attention from the National Football League, where they became the focus of a recently settled lawsuit. Two former NFL players sued the league over the use of race-norming, a controversial practice that assumes that Black people start with a lower cognitive function than others.
Ndubisi said she was pleased to learn that her hospital is getting rid of the race-based algorithm. It won’t affect her care, she said, because she is already on the kidney transplant wait list.
She credits her nephrologist for getting her evaluated for the transplant list last summer. Since then her kidneys have weakened, which led to her receiving at-home dialysis treatment.
“Now somebody else is going to be able to get a step closer to getting their transplant because it’s going to be evened out,” she said. “This is one chip off of what is a very big block.”