Certain medical instruments have built-in methods of correcting for race. They’re based on the premise that Black bodies are inherently different from White bodies. The tool that measures kidney function, for example, underestimates how severe some Black patients’ kidney disease is, and prevents them from getting transplants. Medical students and doctors have been trying to do away with race correction tools once and for all. And they’re starting to see some success.
About Innate: How Science Invented the Myth of Race
“Return, Rebury, Repatriate” is Episode 5, Part 1 of Innate: How Science Invented the Myth of Race a podcast and magazine project that explores the historical roots and persistent legacies of racism in American science and medicine. Published through Distillations, the Science History Institute’s highly acclaimed digital content platform, the project examines the scientific origins of support for racist theories, practices, and policies. Innate is made possible in part by the National Endowment for the Humanities: Democracy demands wisdom.
Hosts: Alexis Pedrick and Elisabeth Berry Drago
Senior Producer: Mariel Carr
Producer: Rigoberto Hernandez
Associate Producer: Padmini Raghunath
Audio Engineer: Jonathan Pfeffer
“Innate Theme” composed by Jonathan Pfeffer. Additional music by Blue Dot Sessions
A Unifying Approach for GFR Estimation: Recommendations of the NKF-ASN Task Force on Reassessing the Inclusion of Race in Diagnosing Kidney Disease, by Cynthia Delgado, Mukta Baweja, Deidra C Crews, Nwamaka D Eneanya, Crystal A Gadegbeku, Lesley A Inker, Mallika L Mendu, W Greg Miller, Marva M Moxey-Mims, Glenda V Roberts, Wendy L St Peter, Curtis Warfield, Neil R Powe
A Yearslong Push to Remove Racist Bias From Kidney Testing Gains New Ground, by Theresa Gaffney
‘An entire system is changing’: UW Medicine stops using race-based equation to calculate kidney function, by Shannon Hong
Breathing Race into the Machine: The Surprising Career of the Spirometer from Plantation to Genetics, by Lundy Braun
Expert Panel Recommends Against Use of Race in Assessment of Kidney Function, by Usha Lee McFarling
Hidden in Plain Sight – Reconsidering the Use of Race Correction in Clinical Algorithms, by Darshali A. Vyas, Leo G. Eisenstein, and David S. Jones
Medical student advocates to end racism in medicine, by Anh Nguyen
Precision in GFR Reporting Let’s Stop Playing the Race Card, by Vanessa Grubbs
Reconsidering the Consequences of Using Race to Estimate Kidney Function, by Nwamaka Denise Eneanya, Wei Yang, Peter Philip Reese
Lisa: Hi. I’m Lisa Berry Drago, and this is Distillations. Welcome to Innate: How Science Invented the Myth of Race. This is episode nine, correcting race.
Naomi: So medical school, I think, has been one of the most transformative experiences for me in both good and bad ways.
Lisa: This is Naomi Nkinsi, a medical student at the University of Washington in Seattle.
Naomi: And it sounds really cheesy. And when other people told me that about their experiences, I would like roll my eyes and be like, “Okay. Drama, [laughs] come on.”
Lisa: Just getting into medical school as an immigrant and a Black woman was an incredible accomplishment. But once admitted, another reality started to set in for her.
Naomi: I remember getting my first white coat bef- like right before starting my first year medical school and feeling this like immense burden of, um, responsibility that knowing that, okay, in four short years, I’m going to be responsible for life and death decisions for other people.
Lisa: She took this responsibility seriously. She put her head down and got ready to soak it all in. In a class about kidneys, she learned of something called race correction. This is David Jones, a medical historian who studies the practice.
David Jones: So doctors for a long time like meaning for centuries if not longer have assumed that there are medically significant differences between people of different races. Sometimes, they think that diseases manifest differently in people of different races. Sometimes, they think that diagnostic tests work differently. And sometimes, they think that treatments need to be done specifically or the treatments need to be tailored for people of different races.
And so, within that broad world of race-based medicine, race correction is something that happens in diagnostic tests. And people disagree about what the best word to use is. Some people talk about race adjustment. Some people talk about race norming. Some people talk about race correction. Others don’t like that phrase because it implies that one race is wrong and needs to be fixed to the other race. But in a way, that is what’s happening.
Lisa: Race correction is used in cardiology, in heart surgery, and in kidney function in determining whether to recommend a vaginal birth after a previous Cesarean delivery in predicting the risk of a kidney stone or a urinary tract infection, in oncology in determining osteoporosis risk score and determining lung function capacity. I could go on.
David Jones: Some of these tools are just sort of out there in the ether. And it’s hard to know what doctors are actually doing. Uh, and in that case, it’s very hard to know what to be involved in changing it.
Lisa: Naomi remembers hearing about the way that race correction is used when measuring someone’s kidney function. When a patient gets blood work done, one of the things they measure is how well your kidneys filter toxins. If you’re Black, the way doctors measure this is different than the way they measure any other race. We’ll get into specifics later. But basically, if you’re Black, they add points to your score. And as a consequence, it makes your kidneys appear healthier than they actually are. Now, this raised all kinds of red flags for Naomi. First, race is a social construct, not a biological category. Second, who determines the race of the patient?
Naomi: So it was shocking to me that something that we use in our clinical practice has race built in, and that it, it changes the trajectory of a person’s um, treatment and the outcomes as a result of that treatment.
Lisa: This practice has real consequences. This measurement can determine whether a patient is referred to a kidney specialist if they’re eligible for certain life-saving medications or if they can be placed on a kidney donation list.
Black Americans are four times more likely than white Americans to have kidney failure. They’re also less likely to receive kidney transplants. So Naomi did what she felt was her responsibility. She spoke up.
Naomi: And that’s kind of when I started pushing back during lecture. Um, and it actually became such a contentious conversation that they had to end class. Um, a report was sent to school [laughs] admin that the class had been disrupted. Um, and then, they… Um, some of our school deans actually came to our, our uh, future sessions to sit in to observe the class and see kind of what the issues were that were being brought up.
Um, I kind of saw it as the deans were there to kind of keep people in line. Um, but that conversation became really contentious. And then, it kind of led to further conversations with the class, with the deans, with the school admin, um, with professors that kind of had like a domino effect.
Lisa: The stuff that seems so evidently wrong to her wasn’t seen the same way by her peers and university administrators.
Naomi: I am one of five Black medical students at my class in Seattle. I alone am one-third of the [laughs] Black, uh, student body in my class in the, the Seattle cohort. So it… There’s also this element of feeling like this is something that is incredibly personal. Like I’m sitting here in class with the same qualifications as the other students learning about how I am biologically inferior to the rest of them.
Lisa: Unfortunately, she was labeled a troublemaker.
Naomi: Uh, this wasn’t the first time I had spoken out about racism in medical school at this point. It was my first year of medical school. But already in like the first or second week, I had been pretty outspoken about the things that I was seeing. I already had meetings with teens. I’d already had numerous emails. [laughs] Some of them incredibly inappropriate, sent to me by professors and staff.
I already had confrontations with other students that were, um, upset about me being in the class and, you know, bringing up these questions that a lot of people, unfortunately, in my class felt that it was, um, like issues of race and racism were, you know, not relevant to medicine because we’re, we’re here to learn science, not learn about, you know, racism and race. Like what does that have to do with anything?
Lisa: These run-ins with the university were her worst nightmare realized. Naomi and her family sacrificed a lot just to get her to medical school. And now, she felt she was being punished for speaking out against something she knew was wrong.
Naomi: Uh, it’s hard to be… to feel like, um, you’re speaking out, and you’re gonna face life-changing repercussions. So there’s kind of like this fear in, in medical school that there’s this idea of like professionalism which means basically in the context of medicine and medical schools that you keep your head down kind of do as you’re told. You don’t really speak up.
Um, um, and I think that’s a, a common experience for a lot of minority students that are outspoken about issues that they’re coming across. The people that have the most to lose are the ones that are speaking up.
Lisa: In this episode, we’re going to explore the issue of race correction. And we’ll meet other people like Naomi who have a lot at stake, and still chose to stand up.
Some of them come from the patient’s side, those most affected by this medical practice, but also from the practitioner side. Medical students and researchers working to eliminate race correction from medicine altogether.
Alexis: Chapter one, who told you I was Black?
Lisa: In 2003, Nicole Jefferson had lingering flu-like symptoms and fatigue. When she went to the emergency room, she thought she would get some medication and be on her way. Instead, she got a life-altering diagnosis.
Nicole: However, at that time, I was told that my kidneys had completely shut down, and I would need to start dialysis immediately.
Lisa: Your kidneys are one of the most vital organs in your body. They remove waste excess fluid and toxins. They filter your blood. They release hormones that regulate blood pressure. When they can’t do that, toxins stay in your body. Dialysis means a machine would now be doing your kidney’s job.
Nicole: When you get so sick that your body can’t take it anymore and it just crashes. And you have to start dialysis immediately. And that’s usually when you put a port in your chest, and you start doing dialysis through your chest so you can get it immediately. Uh, that’s crashing you when you’re just so sick that you can’t… your body can’t take it anymore.
Lisa: At this point, Nicole was just 31 years old and starting a career in information technology in Dallas.
Nicole: Because I went there thinking it was something else, um, I was just in a, a state of shock. I was… I didn’t know really what to think just how is my life gonna be affected, how will my life change. I had a daughter who was very active in school. How would that change me being able to support her? What I can be able to continue to work? I just start thinking things like that, not really, um, what it means um, because, honestly, when I was told I wasn’t even thinking, “Oh, I need a new trans, a new kidney or anything,” I was just thinking about the right thing.
Lisa: She was put onto a donor list. But in the meantime, she had to do dialysis three to four times a week.
Nicole: That, um, it was depressing. It was draining. Um, you know, a lot of times, I would leave out crying. And, um, you know, at that time, I was like 31 or so. So who wants to be 31, you know, in a center for four hours, three days a week, you know? I wanted to continue to work. I wanted to continue to live my life and, you know, be a parent, be a, you know, a ni- a aunt, a niece, all of that. So I knew I couldn’t do that.
Lisa: Five years later, she received the call that she could finally get a kidney.
Nicole: I will say that I felt relieved to get it. I thought I was going to be back to the old… to my old self before kidney disease. And it didn’t happen like that. I had a couple of rejection episodes with it which, you know, I had to go through to try to reverse the rejection a few times. And it just didn’t make me feel the way I thought it would make me feel.
I mistakenly thought that it was a cure. I wasn’t aware that it was just a treatment. I wasn’t aware that it’s really [laughs] no different than dialysis. It’s just that I don’t have to go to, uh, to a place.
Lisa: Nevertheless, she was happy. She could go on with her life without dialysis. In 2011, she moved to Des Moines, Iowa. She was starting to feel better. Then, things took a turn.
Nicole: It’s around 2016 or so um, is when I started feeling like maybe I was in failure. So uh, of course, I was still having my normal, you know, appointments. And my doctor kept telling me, “No, you’re not… You know, you’re not in failure where you need to be transplanted again.”
Lisa: But Nicole knew there was something clearly wrong with her body.
Nicole: I didn’t have any symptoms. I didn’t have anything. Um, what I’m gonna say is controversial. But I’m gonna say it anyway. Um, my kidney and I had a bond. And we kind of talked to each other. I, you know, talked to her, felt like she talked to me. And it was just, um, her telling me she was tired and must, you know… By her telling me she was tired, I knew something was going on.
So again, a lot of people aren’t gonna understand that. A lot of people aren’t gonna believe it. But I absol- I had no symptoms or anything that told me it was other… in failure other than just, you know, my bond with my kidney.
Lisa: She pleaded with her doctors for months to at least try a kidney biopsy.
Nicole: And then, I just decided that I was gonna go to Dallas and get… When I said I know I can go to Dallas and have my old doctors do a biopsy because there’s something going on that these numbers aren’t accurately, uh, displaying.
Lisa: The number she’s talking about is a kidney function measurement known as EGFR. Here’s how it works. Because your kidneys are so important, there’s an entire field of medicine dedicated just to them. It’s called nephrology.
Nephrologists have tried different tools over time to measure kidney function. The gold standard has been to test the urine and blood of a patient through different intervals during the day.
Now, this method is costly, time consuming, and somewhat intrusive. So doctors found another way. They measure a chemical in your blood called serum creatinine. This is basically a waste product that your body naturally develops. And your kidneys filter it out. Now, the number itself is useless unless you factor in things like weight and height measurements. So you plug in your serum creatinine measurement, your height and weight into a mathematical equation. This determines your glomerular filtration rate or EGFR. Glomeruli are the nerve spores and small blood vessels around your kidney. Your kidney has millions of these tiny tubes. And the E in EGFR is estimated.
Cynthia Delgado: So it’s a… It’s literally just an equation. It’s a, a mathematical equation.
Lisa: This is Cynthia Delgado, a nephrologist at the University of California in San Francisco.
Cynthia Delgado: If I were to break this down to a patient of mine, I would say, “You know, we use this value that’s, uh, that’s detected in your blood. And then, we add in how old you are, what your race is, and whether you’re a male or a female. And we come up with this estimation of how well your kidneys are functioning.” Uh, so it doesn’t… It’s just a mathematical equation.
Lisa: Up until 1999, this formula did not take age, sex, and race into account. Ironically, race was added into the formula as a way to make it more inclusive. Except something interesting happened. This race correction coefficient was added only if you were African American. There’s no coefficient for white, Asian, Hispanic, just Black.
So when Nicole gets kidney function measurements, she receives a number on a scale from zero to 120. If the EGFR number is between 60 and 120, that’s considered normal. If the number is between 15 and 60, that’s considered kidney disease. And if the number is 15 or below, it’s kidney failure.
So for example, let’s say, we have a patient at 14. And then because of race correction, a few points get added. It could be the difference between getting listed on the donor list or not. Because Nicole is Black, she was race corrected. It showed her kidneys to be healthier than they actually were. And this happens nationwide to African Americans. Because the EGFR test is diagnostic, it can prevent them from getting referred to nephrologists or from being added to kidney transplant lists.
Kidney disease is already a silent killer. Many people don’t even realize that it’s happening to them until it’s too late. Race correction makes this problem worse. This could have been Nicole. But she spoke up. She kept insisting for a biopsy until her doctor finally relented.
Nicole: I always say I’ll never forget because I was… It was 2016 and, um, he called me. And he said, “You do know your body, don’t you?” And I said, “What is it?” And he said, “Your kidney is 90% scarred. You need to be listed again.”
Lisa: She tried to get on a donor list at a highly regarded medical center in Minnesota. There, she had her kidney function measured again. And again, the formula calculated that her numbers were not low enough to be listed for a transplant. Her kidney function score had had points added to it simply because she was Black.
Nicole: And they called and said, “Well, ell we can’t list you because your EGFR isn’t low enough.” And I said, “Well, wait. Why can’t, you know?” And they said, “Well, y- y- It’s not used to about two points off.” I said, “Well, list me as white. List me as white.” They said, “We can’t do that.” I said, “Well, who told you I was Black? Who told you I was a Black person? Y- Are you basing that on assumption because I always put other? So why would you base it on that?”
I go around screaming that I’m Black. I, I mean I’ll… I’m proud to be Black. But for you to say that and then dismiss me to tell me I need to be sicker than everyone else to be transplanted? No.” That… At that point, I was like, “List me as white.”
Lisa: She wasn’t able to get listed in Minnesota until her kidney function numbers dropped even lower.
Nicole: I was hurt. I was upset. That’s when I started thinking, “Okay. Wow, they are discriminating against me. This is pure discrimination. Nothing but discrimination against me.” Um, I had never felt that way before. But for them to tell me that and base it on this focus antiquated in- in- information, that was, that was troubling. It was hurtful. I think was probably the first time I cried in my journey… um, in this second journey.
It did make me feel like I wasn’t worthy. But it also made me feel like we’re gonna wait and make y’all last. We’ve already felt, you know, put to the back and last on so many other things in this… in life, you know, especially in this country during this time.
Lisa: So why only race correct African Americans? What’s the logic behind it? And where did this EGFR formula come from?
Alexis: Chapter two, an enigma.
Lisa: Race became part of kidney function measurement. Thanks to serum creatinine. This is a waste product that comes from the normal wear and tear of your muscles. It happens to everyone every day. And your kidneys usually filter it out. In the mid-1990s, data from studies showed that Black Americans have slightly higher levels of serum creatinine than white people. More recent studies have confirmed it.
The question then becomes why would African Americans have higher levels of serum creatinine than whites? This is Neil Powe. He’s the chief of Medicine at San Francisco General Hospital.
Neil Powe: So that remains an enigma.
Lisa: Some researchers have theorized that Black people may have higher levels of serum creatinine because they’re more muscular than white people. So in essence, they’re using race as a proxy for muscle mass. Remember Nicole? Her doctors told her that they were race correcting for that very reason.
Nicole: When I started reading over my labs and I said, “Why does this number say if African American times 1.5, it’s like what does that even mean?” And so, that’s when they told me, “Well that’s because Black people tend to have more muscle mass.” And so, I was like, “Wait. So you’re gonna base every race… uh, I mean everyone in a race on something that doesn’t make sense? Is it because I know me personally, I don’t have any muscle mass. I know my… This… There’s no muscle mass. It’s just that.”
Lisa: As you can probably guess, the so-called evidence that Black people are more muscular than white people overall is not very good.
David Jones: Is it actually the case that Black people are more muscular than white people? That doesn’t make a lot of sense. I know a lot of muscular white people and muscular Black people and I know a lot of non-muscular or white and Black people. Is there really a good study across a national sample of people just showing this? And often, the answer is no. I- If you trace the citations backwards, you’ll see that, you know, what someone did is they did a study on 80 people back in the 1950s. And in that collection of 80 people, they found that the Black people were more muscular.
To which as a historian, I would say, “Well, who are these 80 people who were studied?” In the 1950s, was it the case that Black people were more likely to be laborers and white people were more likely to be office workers? I don’t know. It’s possible. If that’s true, that would explain why in that collection of 80 people the Black people had more muscle mass. It had nothing to do with race. It had everything to do with racism and what kinds of jobs people in the United States had access to. And be crazy for the healthcare system to bake that kind of finding a very misleading finding into medical practice.
Lisa: So if Black people are not actually more muscular than white people, then, why do they have more serum creatinine? It could be that an individual is muscular. It could be their diet. It could be thyroid related or related to the medications they take. There are actually not a lot of studies that can answer this question. There is evidence, however, that it’s not associated with race.
Neil Powe: Interestingly, there… When you go and look at this phenomena in other countries, there have been some tiny studies that have come out of Africa and out of South America, this phenomenal of race being associated with creatinine. We don’t see that as strong a signal there. Um, and I think that probably tells us that this is not biological. But it’s real. It’s real. And it’s a piece of data that we can use to best estimate, uh, kidney function.
Lisa: So if we don’t understand the mechanism that makes a Black person or a white person have more serum creatinine than others, why use race in the formula?
Neil Powe: So I will say that this is not unusual in medicine. Uh, we have drugs that we use that we’d only… that, that we know are effective. But we don’t understand always the, the, the biologic mechanism by which they work. Uh, you know, some of these drugs were discovered by trial and error. And since many of the things that we do in medicine, we know that they work. But we might not understand upfront what the mechanism is. And then, we might learn as we go on and we do research.
Lisa: In other words, medicine is based around this idea that it’s not our job to figure out why the differences exist. Our job is to use data to establish the differences and treat people accordingly. And as Dr. Powe points out, we wouldn’t have modern day medicine without this philosophy. It’s been going on since ancient Greece.
David Jones: And, and that’s always been an attention to medicine. That one goes back thousands of years. Uh, if you look back at the ancient Greek medical texts, you can find debates between the rationalists who would say, “We need to understand what’s going on and have a good reason to do what we do in medicine.” And then, the empiricists, people who would say, “Well, let’s just look at the data. Let’s look at the outcomes.”
And if I can show you that a treatment works, we should do it even if we don’t have any idea at all, uh, that the treatment works. And these debates remain alive and well. And so, often, what will happen when someone introduces race correction, they will often speculate about what the mechanism might be. And so, when race correction was introduced for the kidney function tests, they would say, “Well, you know, some studies have shown that Black people are more muscular. And how muscular you are affects, uh, uh, kidney function” And so, that’s what’s going on.
And, and here’s the empirical data that makes us think this is a good idea because people say “Well, you know, there’s some data there. Uh, and there is this rationale. Gr. Let’s do it.”
Lisa: Rationalists versus empiricists is a fancy way of saying cause versus effect. Rationalists were more interested in finding out why things are the way they are. Empiricists are more interested in finding out the problem and applying a solution even if you don’t fully understand what’s going on. And as it turns out, medicine favors empiricism.
Lisa: Okay, so just to summarize, race correction and kidney function measurement was adopted because some studies showed Black people in the United States have higher levels of serum creatinine than whites. We don’t know why. But it’s probably not because of their race. And in the absence of an explanation, some researchers concluded that it’s because Black people are more muscular.
Despite all the flaws in that chain of logic, race correction became the standard for measuring kidney function. That is until a groundswell of opposition… That is until a groundswell of opposition began to emerge from a dedicated group of nephrologists and medical students.
Alexis: Chapter three, a reckoning.
Lisa: After Naomi first spoke out, the university held a second lecture on race correction. By the end, there were more questions than answers.
Naomi: like I had a very simple question. Why is race in this equation? How does race play to the physiology of the kidneys? What happens if people are mixed-raced? Who determines the person’s race? Like it was just kind of a mess. That conversation really sparked kind of, um, a realization that, uh, there is kind of this unanswered question like they haven’t really… that they themselves had never really interrogated why they’re continuing this practice or why it’s being used.
Lisa: Naomi was able to share a vast amount of literature on this. Senior Health Equity Scholars have been questioning the use of race correction too. They lent their support and their research. This is Amaka Eneanya, a nephrologist who was an assistant professor at the University of Pennsylvania at the time.
Naomi: I learned that some colleagues of mine um, actually driven by medical students had just completely thrown out a Black race in that… in their equation. And so, when I learned of this um, again, these were good, good colleagues of mine, we decided to write about it. We decided to put it front and center and to take this nationally or even internationally to stop doing this practice. So we wrote about it in JAMA and it took out… It took off from there.
Lisa: All the support get Naomi’s arguments more standing.
Naomi: There, it really was about faculty members discussing this with each other which again calls back to the idea of hierarchy in medicine. It was very hard for people to hear this information from a student. The idea… especially as a first year medical student was like, [laughs] “You just got here. Like what are you talking about? Like I’ve been practicing medicine for decades. You were… weren’t even here like three months ago. Like where do you get the nerve?”
Lisa: This debate was also happening at other medical schools and hospitals nationwide. David Jones was helping students make the change in hospitals in the Boston area. He was surprised by the way that hospital officials responded.
David Jones: And, and one of the things that has been maddening to me about all of this is as a lot of doctors uh, adopted a, a conservative… not politically conservative, but a conservative meaning cautious position where they’ll say, “Well, if you wanna change the standard of care, we need to do very careful studies before making a big change like that. We need to do modeling studies to figure out what impact it would have if we stopped race correction.”
You know, I totally understand that caution. But no one, as far as I know, called for such caution when race correction was introduced. Uh, and with many of these tools, as far as I could tell, researchers did a study. They said, “We think this is a good idea.” And it happened. And there wasn’t careful consideration. There wa- there was no call for modeling before people started to race correct pulmonary function tests or estimated glomerular filtration rates. Uh, and so, it seems like in the United States because physicians in, in all aspects of society are so fixated on race, the baseline assumption is that race matters, race is important. And so, therefore, the default is to race correct.
Lisa: In 2020, a tragedy changed the course of this story. On May 25th, George Floyd was killed by police in Minneapolis. It caused a reckoning on race nationwide. Just four days later, the University of Washington announced that it was transitioning away from using race and its kidney function measurement formula.
Naomi: It felt amazing. [laughs] But, um, when I first found out about it, I was actually shocked that a change was made because I went into this 100% expecting that nothing would come from it. So my view of it is like, “Okay. It’s unlikely that any change will be made because medicine is slow. People are really hesitant to talk about race.” Um, but the conversation is starting. And then, maybe the next round of students will move it a little bit further. Then next round… Like I, I didn’t expect it to be an actual change.
So it was, um, really rewarding to see that something had actually happened. And it, it didn’t justify the harms that I faced in my experiences. But it did make it seem like, “Okay. Like I made a tangible change came out of this.” And I feel like I have. Like I went into medicine to make a positive influence.
Lisa: Naomi points out that there’s a lot of literature that shows race correction and kidney function was simply bad science. And the change was considered for more than two years at her university hospital. It wasn’t a hasty decision or unsupported by data.
Naomi: there are people that will be like, “Well, you know, these institutions are just trying to be woke. They’re doing science that’s not real now because they’re trying to pander to, you know, people that wanna talk about race and racism all the time.” But like this is a change that is gonna have tangible benefit to patients and makes it source sciences actually more accurate because we are taking into consideration the history of how these, uh, tests became racialized in the first place.
Lisa: And it wasn’t just the University of Washington. In June, Mass General Brigham Hospital in Boston announced it was eliminating its use of race correction too. Now, there was momentum. Students at other medical schools around the country were also pushing for a change.
Medical school is like going at 140 miles per hour in a Prius on the 101 in LA where there’s like cracks everywhere. It’s not well maintained. You know, the… My vessel feels worn.
Lisa: That’s Paloma Orozco Scott, a medical student at Mount Sinai University in New York City what they’re describing here is how intense medical school can be. She recalls a particularly striking lecture in her first year with Dr. Staci Leisman.
Paloma: And she gave a lecture titled Is Math which I think [laughs] is a very provocative title for many people. Um, and just even hearing the title itself could you… could probably have a two-hour dinner conversation about it. And it was so, I would call it like beautify- It was beautifully done in that she used that lecture to teach us what EGFR is and how it works.
Lisa: This is Karina Sia, a medical student at Mount Sinai who also took that class.
Paloma: And she mentioned this formula could have the ability to categorize a Black patient and a white patient differently even if their blood value is the same, right, just on the basis of their race. And, you know, there’s a ton of issues with that, that I can get into such as who decides what race this patient is. Um, the study only had Black and non-Black. So for me, I’m Asian, I would just con- be considered as non-Black even though my genetics versus a white person genetics might not be exactly the same.
And then, is race genetics? Is race biology, right? And that’s, I think, the ba- The major question is can you tell what someone’s kidney function is gonna be like just by basis of their race? So that was the first time I heard about it. And I think the most shocking part was that it was still being used at Mount Sinai.
Lisa: The lecture itself was developed after a student in 2015 asked why race was taken into consideration when measuring kidney function. The lecture was impactful. But medical school is busy. The students moved on to the next thing. But in the summer of 2020, after the murder of George Floyd, Paloma and her classmates knew they had to do something.
Paloma: Karina called me and said, “You know, I’ve been thinking we need to do something.” You know, every person has to do something to actively fight racism. We were… We had been taught about this thing that used race. We had been taught about which ways it was using race in ways that were somewhere between incorrect and problematic. Karina said to me, “Have you ever written a petition?” And I said, “Yeah, I have.”
And so, we worked together to create this petition. And it was a really great conversations about, you know, how do we balance our scientific mind, but also our humanities background and the background about responsibility to society.
Lisa: Their petition included 15 citations and amassed more than 1600 signatures including nephrologists, students and faculty from Mount Sinai. When Mount Sinai received the petition, they created a task force of doctors who use EGFR in their daily practice. Their job was to come up with new recommendations. On December 8, 2020, Mount Sinai officially stopped using race in its equation for measuring kidney function.
Carina Seah: I was not the first medical student to try and make this change. I, you know… Um, generations along, there have been generations of med students before me that you’re not got- gonna get to hear their names or talk to them on a podcast who pushed far harder than I did and met far more resistance because they… the institution said, “No, no, no. This is how it’s always been done, and this is how medicine works,” is that you have to publish the study first. And no… There’s been no studies telling me that I shouldn’t do this.
Um, and this is not racist, like, no, no, no. You don’t understand. It’s just biology. It’s not racist. And it really took a nationwide reckoning on systemic racism, I think, and injustice in order for these institutions to re-examine this. And I think that… that’s why the change happened when it did. And that’s why me and Paloma, um, were able to make the change. It really was a timing what was going on the world. And the institutions were ready for it. Um, and I can’t… [laughs] I can’t control that. It was nothing I did. It just was right time.
Lisa: And we can’t stress this enough it’s really important that the changes to race-based medicine are happening in medical school. This is this- This is the place where students are shaped to be the doctors they’ll become. Remember, the Prius analogy? Students are being taught to make decisions so quickly without deeper consideration which makes it easier for race-based thinking to become embedded.
Karina Seah: Yeah. And things get embedded so quickly. Um, I mean I guess another example is our licensing exams used to include um, associations between race and certain diseases. And that’s been changed too. So we used to have to memorize really quickly, Look, okay. This disease Asian people. This disease, Black people. This disease, white people. And that’s just so reductionist, right? That’s not actually a critical thinking way of approaching it.
And so, because that… the testing involved us having to memorize these gut associations with race, it’s kind of problematic. So they’ve, they’ve actually removed that. And so, that’s another incremental change where like no one will ever have to have some sort of gutne- gut first thought when they see a patient leading to their own racialization of the patient, you know, impacting their clinical decision making, right?
So medical students are starting from zero knowledge. We come in with [laughs] nothing. And we are expecting to gain every… So every instinct we have, every association we have when we walk into the hospital. And our gut is to say something. We can’t… You know, there’s so many of those decisions that get made in medicine and, and being able to shape… Those are being able to shape someone thinking, “Hmm, something’s wrong here. So I don’t know what… But my gut’s telling me something about this interaction is wrong.” Um, being able to shape that at that early stage in a doctor’s career is so powerful.
Lisa: One issue is that these changes were happening on a hospital by hospital basis, not in a national centralized way. The standards in one hospital were now different than in another. That’s actually what happened in Boston. A patient could go to Beth Israel Hospital in the city where they eliminated race correction in 2017. But if they went to a satellite hospital in the suburbs, they might still be race correcting. And this didn’t sit well with Dr. Powe.
Neil Powe: Well, this was what drove me crazy. And why I decided, uh, to, to speak out if I was concerned that a patient could go to one hospital and have kidney disease and go to another hospital right down the street and not have kidney uh, disease. So this… A- and that’s just chaos that we don’t have a measure that is consistent across all hospitals. And the hospitals began to just change things on their own in the way that they see… saw, uh, fit without evidence for it.
Um, and that was one of the, um, the driving forces for me to get this right so that we could come up with an approach that everyone could rally behind, and that could be rolled out across the country.
Lisa: So instead of making changes in a piecemeal way, Paul and his colleagues rallied around the idea of making a change at the institutional level.
Alexis: Chapter four, standard of care.
Lisa: In July 2020, the National Kidney Foundation and the American Society of Nephrology convened a 15-person task force to consider whether or not to remove race correction from kidney function measurement tools.
Cynthia Delgado: With all of that, um, in mind um, and with the… what we saw happening to George Floyd, um, there was a real call for evaluating race… the use of race and clinical algorithms. And kidney function estimation um, was at the top of that priority.
Lisa: That was Cynthia Delgado again. She was co-chair of the task force. The task force convened for more than a year. They heard testimony from patients. They looked at all the evidence and literature available. And finally, they considered 26 different approaches that could replace the race correction formula. They finally came back with three recommendations. First, they recommended that hospitals move away from the race correction formula and use a different one instead.
Cynthia Delgado: CKD, the CKD-EPI 2021 race-free equation, I know with us, doctors, we just have to make everything so complicated, don’t we? [laughs]
This formula was developed in 2009. It’s the same one that hospitals like Mount Sinai and University of Washington had already switched too recently. Part of the appeal of this recommendation is that this new race-free equation could be applied in most labs right away. It’s just a simple software update.
The second recommendation was if nephrologists need more information, they can measure another biomarker called cystatin C. It’s actually considered more accurate. Implementing this would take more time because it’s expensive and many labs currently don’t have the ability to test for it.
Lisa: The final recommendation is to continue looking for more biomarkers and to find the true causes of health disparities and provide more accurate measurements of kidney functions. Now, these recommendations are just that recommendations. It’s up to individual institutions to accept these changes and that could take a long time.
When the race correction formula was originally developed, it took seven years for it to be adopted by about 50% of labs. It took 14 years for it to be adopted by about 90% of labs. There are hopeful signs that the move away from race correction could happen faster than that. Some leading organizations like the Veterans Health Administration has already made the change.
Cynthia Delgado: The other day, someone sent me a text message with um, a picture of a lab value that had my last name on it. And I was like, “What is this.” [laughs] And it was because there was an institution that implemented the equation and had the reference to the paper um, on there, so which was really cool.
Lisa: It’s estimated that with this change, 14,000 Black Americans will now be eligible for kidney transplant. And 60,000 will now be eligible to be referred to nephrologists. But what does this mean for patients like Nicole? She said she’s happy that the changes were made. She’s talked to medical students who wanna see more change at their hospitals.
Naomi: I love this new generation. This new generation, they are go-getters. They are, they are doing it. They are making pave in the way. They are doing things that maybe my generation was… didn’t wanna rock the boat about. But, you know, it’s just even when I’m on the phone with these, these fellows, you know, they’re in their 20s, 30s. And I just feel so good that this is… that everything has been left to them because they’re… they are gonna get it done. They’re gonna get it done.
Changes come a little late. But she did have a happy outcome. After being race corrected in Minnesota, she took her biopsy results and was successfully listed in Iowa. In April 2020, at the height of COVID, she got a call that a kidney was available for her.
Naomi: I am so glad I did this one. This has been the best one. This… Now, this particular one, I’m not gonna say I can do everything that I could. So I’m 50 now, right? [laughs] Um, it, it has me feeling really good.
Lisa: Nicole has become an advocate for kidney research and transplantation. Part of the reason why she had a good outcome was because she listened to her body and became an advocate for herself.
Naomi: One of the things that I, you know, like I said that I pass on the others is just make sure you look at everything. Ask and always ask questions, why. Why is this a situation? Why does this… Tell me why this makes sense to you. Even if it’s to a doctor, ask questions. Why? Why are you going this route? Why are you taking that route? And see what they say.
Lisa: The work of patients like Nicole and students like Naomi has entered the public consciousness. It’s even made its way into the latest season of the popular ABC show, Gray’s Anatomy.
Grey’s Anatomy: When the estimated GFR was developed, it was assumed that Black people have higher muscle mass. It added a multiplier to account for that assumption which then increases the Black patient’s EGFR and registers them as having less severe disease than other people.Making them ineligible for transplants. How’s this even help him?
It Stems from a long line of assumptions about Black people that have sneaked their way into medicine, you know, that we have higher tolerance for pain, different bone density, lower lung capacity.And yet these assumptions still exist in clinical formulas. I, I never even stop to think about the EGFR.
Lisa: So does the removal of race correction and kidney function mean it’s a model to follow in eliminating race correction across medicine? Another, maybe more well-known race correction tool is the vaginal birth after a previous Caesarean delivery calculator which has been used since 2007. It was revised by its creators in 2021 to eliminate race from its formulas. This was a relatively easy change because the calculators are referenced from a website. All it takes is a simple revision. Others are not so easy to change.
Lisa: Part of the reason why is because they’re not well known, and doctors may not even realize that they are race correcting. For example, the spirometer is a device that’s used to measure lung capacity. The mathematical equation that race corrects its measurements is embedded within the software. So doctors don’t even realize that it’s happening. This is Lundy Braun who wrote a book called Breathing Race into the Machine: The Surprising Career of the Spirometer from Plantation to Genetics. She went around doctor’s offices to ask if they realized they were race correcting.
Lundy Braun: They were kind of shocked um, to realize that they didn’t know what, um, what standards were programmed into the um, spirometer and some would go look um, for the spec sheets that would tell you the standards that were in there. Um, some um, wanted to… what… a question their, um, respiratory technicians. But by and large, no one really knew what standards were in the, uh, in the machines.
Lisa: Lundy Braun is working in a similar task force with pulmonologists to make recommendations on whether or not to continue using race correction in lung capacity measurement. As the kidney function measurement battle shows, the change will probably be slow.
David Jones: One of my colleagues who’s worked on this for many years, Michelle Morse, who’s now the chief medical officer for the Department of Health in New York City, has been a big advocate for ending race correction. She arrives and realizes in 2021 that none of New York’s public hospitals had stopped race correction. Uh, and she thought, “Well, here I am. I’m, I’m chief medical officer. I will make this change.” And turns out she doesn’t actually have the power to make that change because the hospitals are like, “Oh, this is complicated. We need to like hire a programmer to redo this, that, and the other. We need to have outreach to physicians to explain why we’re doing this.”
Uh, and so, there are a lot of forces, again conservative and, and like the resistance to change meaning of conservatives. There are a lot of conservative forces in US Healthcare that make any changes like this hard to do. Now, the fact that the National Kidney task force came out and said, “We recommend making this change,” that will apply some pressure on hospitals because, again, the hospitals don’t want to be deviating from a standard of care. And when you have an authoritative prestigious entity that says we should make this change, that puts pressure on hospitals to do so.
Lisa: Because the US medical system is so decentralized, it’s going to take national organizations to make recommendations that can be implemented system-wide. Now that the race corrected formula is losing ground, does that mean health disparities in nephrology are a thing of the past? We’d like to think so. But as Dr. Powe points out, there were already health disparities affecting Black people long before the race correction formula became the villain in the story.
Neil Powe: In fact, those disparities were present in the mid-1980s, some 15 years before documented that those disparities for African Americans were there, as well as work that I did in the mid-1990s before the equation showing that African Americans were less likely to be referred to a specialist. But they became linked. Um, and we know that those disparities existed. And if the equation was not there, how could they have caused those disparities, that one really wanted to achieve help equity in those measures, it distracted us from going after the real drivers of those disparities.
Lisa: In a sense, the race correction formula was itself a symptom which is why Naomi says that this success story should not be the end, but the beginning.
Naomi: I think the push towards racial health equity that we’re seeing is exciting and encouraging and… But there’s a real reason to worry that institutions are kind of just like jumping on this as like a trend that, you know, now that everyone kind of knows the language that you should be doing that you’re, you know, you can make these statements without actually having any action behind them.
Um, and I am concerned that hospitals will remove race from these equations and stop there because they’ve been kind of lulled into this idea that, you know, “Oh, we did this one step. And we’re doing the work,” and that’s it, um, to know… So the algorithm…Change in these algorithms are, you know, a small piece of the puzzle. The changes were impactful and unprecedented. Um, and I think it’s a drawn attention towards other ways that we can advance reform.
But I think that we can recognize that it isn’t the end-all be-all of fixing health disparities without also poo-pooing the impact that this change has had and the movement that it’s kind of um, spurred out of it.
Lisa: As for Naomi.
Naomi: So I’ll be totally honest like after my first year of medical school, I was like not coming back. [laughs]
Lisa: But she did come back. She’s on her last year of medical school on her way to becoming a doctor. She says she hopes that outspoken students of the future don’t have to go through the same struggles.
Naomi: So many of these changes came from the effort of, of students and patients and people that had a lot to lose by being outspoken and to just recognize the effort that went into this and to not lose that in the conversation.
Lisa: This episode was reported and produced by Rigoberto Hernandez with additional production and editing by Alexis Pedrick and Padmini Raghunath. It was mixed by Jonathan Pfeffer, who also composed our Innate theme music. Distillations is more than a podcast. It’s also a multimedia magazine. You can find our videos, stories and podcasts at distillations.org. You can follow the Science History Institute on Facebook, Twitter, and Instagram for news about our podcasts and everything else going on in our museum, library and research center. The Science History Institute remains committed to revealing the role of science in our world. Please, support our efforts at sciencehistory.org/givenow. For Distillations, I’m Lisa Berry Drago. Thanks for listening.