Few areas in the rapidly evolving field of healthcare have witnessed a transformation as profound as the reassessment of racial factors in kidney disease diagnosis. Dr. Cynthia Delgado and Dr. Neil Powe, co-chairs of the National Kidney Foundation (NKF)/American Society of Nephrology (ASN) Task Force on Reassessing the Inclusion of Race in Diagnosing Kidney Diseases, have been at the forefront of this pivotal change.
They were recognized in the TIME100 Health List, a list of the 100 most influential people in global health — for their groundbreaking work on the NKF/ASN Task Force. This prestigious acknowledgment highlights their efforts to dismantle the racial biases long embedded within the algorithms used for kidney disease diagnosis — biases that have historically impacted access to kidney transplants and overall patient care.
Under their leadership, the NKF/ASN Task Force has advocated for a race-free approach to estimating kidney function, using creatinine as a universal biomarker alongside recommendations for incorporating additional markers like cystatin C, which is not influenced by race.
In this interview with Xtalks, Dr. Delgado and Dr. Powe shared their journey towards reshaping kidney health diagnostics. Their commitment and innovative approach to medical equity are truly inspiring, and their story is a testament to the resilience and determination required to bring about significant change in healthcare.
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A Race-Free Algorithm for Kidney Disease Diagnosis
The NKF/ASN task force’s recommendations have sparked a rapid transformation across the medical community, offering a promising future for kidney care. Dr. Powe remarked on the speed of adoption: “The original equation with race, it took eight years before 50 percent of US labs had adopted it. It took 14 years before 90 percent had adopted it. When we did this equation, in 18 months, two-thirds of labs in the country had changed.” This was a stark contrast to the original, which took years to become widely accepted.
Dr. Delgado added, “The biggest key was implementation. Imagine getting every single lab across this country, every single clinical clinic, medical institution across this country to quickly turn over and adapt an equation that was put out.”
A key aspect of the updated race-free algorithm is its incorporation of cystatin C, a biomarker not influenced by race, which provides a more equitable basis for measuring kidney function. It uses both cystatin C and creatinine (a universal marker that enables the use of diverse patient data and a range of clinical consequences) to make clinical decisions more accurate. Together, they provide a better assessment of kidney health without relying on racial categorization.
Dr. Delgado explained how the new approach could potentially adjust transplant wait times, stating, “…if you were on the transplant wait list and you were listed with the old equation and you still had say five years to go before your transplant, the newer approach actually got you closer up on the list, such that many people were actually transplanted a lot sooner than they otherwise would’ve been.”
Black Americans are four times at risk of developing chronic kidney disease, but only half as likely to get a transplant. Under the new algorithm, modified transplant wait times for some Black patients have already been observed.
The Need for Change in an Era of Health Disparity
“It turns out that people for over 50 years have been looking for simple ways to estimate a person’s kidney function using simple tests,” explained Dr. Powe on the historical backdrop that led to the reassessment of racial inclusion in kidney function estimation.
This journey began in the 1970s but gained significant attention in the late 1990s when a female Black American scientist observed discrepancies in creatinine levels among Black Americans compared to other groups. These findings prompted the inclusion of race as a biological measurement in the equations used to estimate kidney function: a thought that would come under fire over the years.
The turning point, however, came much later. Dr. Powe highlighted, “In 2020, catalyzed by the pandemic and the greater number of deaths and morbidity of COVID-19 in Black Americans, and then the murders of George Floyd, Ahmaud Arbery and Breonna Taylor brought issues of systemic racism and social justice into play.” This period of intense scrutiny and societal upheaval led to a critical reevaluation of the role of race in medical algorithms.
“There was a flurry of activity on social media, in the press and by even people reaching out to the Congress of the United States to examine why race was in these equations. And the NKF and ASN wanted to address this proactively and engaged us, as well as other experts who were on the committee,” added Dr. Powe.
Science and Social Responsibility
“Kidney function estimation is ubiquitous throughout the practice of medicine,” noted Dr. Delgado, speaking about the urgency and widespread implications of their work. She emphasized the extensive use of these estimations in everything from drug dosing to transplant evaluations. The decision to reassess and potentially revise these estimations was monumental, necessitating a careful, balanced approach towards kidney disease diagnosis.
As Dr. Powe explained, “When institutions started to change this formula that was 20 years old, they began to do it in different ways. And the implication is that a patient, if they went to one institution, might have kidney disease, but if they went across town, they may not have kidney disease. So, it was un-standardizing medical practice that people had tried for years to standardize.”
Dr. Delgado spoke about the task force’s dual focus on social responsibility and rigorous science. The overarching concern was to avoid unintentionally introducing new biases while attempting to correct existing ones. Dr. Delgado elucidated, “We wanted to make sure that everyone’s voices were heard and all of the data that was utilized from all the diverse patient populations was kept to answer this question.”
In their sessions, nearly a hundred experts from around the world, including patients and trainees who had raised many of these issues, testified to the NKF/ASN Task Force.
“We laid out the evidence as well as our values so that everyone could see that,” Dr. Powe shared, underscoring the importance of a unified approach in addressing such a complex issue. They were also keenly aware of the need for ongoing dialogue and research. Dr. Delgado noted the dynamic nature of their task: “And we acknowledged it throughout the entire track that there were questions that we still did not have answers or data for, which is why we also came up with the list of future research and future directions challenging the research community to answer the questions that the Task Force could not.”
Patient-Centricity and Health Equity
Looking ahead, both doctors emphasized the necessity of ongoing efforts to advance equity in kidney disease diagnosis and transplantation services. They stressed the importance of transparency, patient-centered care and the need to continuously challenge existing paradigms.
As Dr. Powe emphasized, “I think being patient-centered, involving patients in these decisions, the decisions that Cynthia talked about with regard to medication use, transplantation, donating an organ, using contrast imaging agents, all of those decisions that kidney disease really affects, they really need to think about the decisions they make that are very important to either patient evaluation or their treatment.”
Reflecting on Recognition and the Path Forward
Both Dr. Delgado and Dr. Powe expressed deep gratitude and honor for the recognition of their work, not only for its scientific impact but for its contribution to improving patient care and advancing health equity in the landscape of kidney disease diagnosis. “It’s just been an incredible accolade to receive, and it was an incredible surprise for both of us,” said Dr. Delgado.
However, she admitted that they saw their current achievements as just the beginning, “And I think, and I’m sure Neil will agree, that this is just the tip of the iceberg because disparities in healthcare are not limited to just this equation.”
The NKF/ASN Task Force has set a precedent for how medicine can and should adapt in the face of societal shifts and scientific advancements. Their work is proof of the power of informed, compassionate leadership in the face of systemic challenges.
As Dr. Delgado explained: “To give you a little bit of a reference…in terms of checking for heart disease and other markers, clinical markers of your health take years, if not decades, to fully roll out. So, this was truly what Neil and I always call an all-hands-on-deck moment where we really all felt that it was very important for us to embrace this change and to move the practice of medicine into an equitable future.”
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