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How a racially biased kidney test harmed Black patients

 June 3, 2024 at 1:24 PM PDT

S1: Welcome in San Diego , it's Jade Hindman. On today's midday edition , racial bias in a kidney test prevented thousands of black patients from getting the transplants they needed. We'll talk about how race is used in medical practice. This is KPBS Midday Edition. Connecting our communities through conversation. For years , a racially biased lab test prevented thousands of black patients from getting kidney transplants. Well , now that racial bias has been removed from the test and more than 14,000 black patients have been moved up the transplant list. The test is called the GFR. It determines kidney function based on how much a waste compound called creatinine gets filtered from your blood. If the levels are high , it means the kidneys may not be working well. So how did a racial bias find its way into what seemed like a straightforward test ? Well , in short , creatinine is a byproduct of muscle. And when a small number of black patients had higher creatinine levels in early clinical trials for GFR , researchers pointed to a false assumption that all black people had higher muscle mass and therefore higher creatinine levels from their doctors began applying what they call a race correction to black patients. GFR scores , which made their kidneys appear healthier than non-black patients. Two years ago , the United Network for Organ Sharing , or Unos , finally required all transplant programs use race neutral calculations , and last year they ordered those programs to adjust. Waiting times for black patients impacted. More than 2800 of them have now received a transplant. One of them is Craig Merritt. He shared his experience with NPR's a martinez earlier this year.

S2: I picked up the phone. The person on the other end says , we got one for you. We got a kidney for you. That moment was surreal.

S3: What's life been like since the transplant ? I mean , what's changed for you ? Everything.

S2: Everything. Because now I have a new lease on life. And the kidney is doing what it's supposed to do through.

S3: Everything that you've been through. Have you thought about all of the black patients that have died because they were put further back on a transplant list ? Because an evaluation that factored in the race ? Absolutely.

S2: And that's what angers me the most. And now my passion and my ministry moving forward is to ensure that black and brown communities that we have , the education that we are in , the know. I convert that angry energy into something that will help others going forward.

S1: Well , here in San Diego , medical centers including UC San Diego , sharp , Kaiser and Scripps tell KPBS they moved to race neutral calculations of kidney function. According to Scripps Health , 14% of black patients on their kidney transplant list received an adjustment to their waiting time. And today on midday Edition , we're talking about that GFR test and other medically biased diagnostic tools in health care. Also , what's being done to address those biases ? I'm joined today by Doctor Rodney Hood , president and chairman of the Multicultural Health Foundation. He's a physician with an expertise in health disparities , medical history , and racism in medical care. Welcome back to Midday Edition , Doctor hood.

S4: Thank you for having me.

S1: We're so glad you're here. And also , Doctor Lou Hart , he's medical director of health equity for Yale New Haven Health and assistant professor of pediatrics at Yale. Before that , he worked at New York City Health and Hospitals , where he led the Medical Racism Initiative. And that program eliminated race based GFR and other bias test across the entire medical system. Doctor Hart , welcome.

S5: Thank you so much for having me. Well , it's.

S1: Great to have you both here for this conversation. Doctor Hart , I'll start with you. Give us the background on the GFR test.


S5: To estimate the function of a patient's kidneys based on a simple blood test. And it really was revolutionary in that it allowed us to much better and more accurately estimate how well our patients kidney function was occurring over time. Unfortunately , when it was first discovered , the researchers found differences between patients in the study , and they found that for the 10% of patients who were identified as Black or African American , they seem to have very different kidney function than the remainder study participants who were mostly white , though there were some Hispanic and Asian patients identified , but they were categorized as non-black. And when comparing those two groups , we saw there was about a 15% difference in kidney function. And as opposed to identifying a difference as a disparity , potentially with social reasons. For the difference across the groups. The researchers concluded that this difference in kidney function was a biological difference , and I think it was that flawed understanding of really rigorous research and data that put us into the position of providing different care to our patients as we were managing their kidney disease on the basis of their race and had their the color of their skin been different , they would have been receiving different care. Modern medicine has still a long way to go , and I think a more contemporary understanding of race as a social identity and as a risk factor for racism is not a tool that we should be including haphazardly in our studies without having having a better understanding. Because in 2024 and for the past 20 years , we've known that race is not a biological categorization of humans. It is not even a good proxy for ancestry. It's a sociopolitical tool to categorize people based on how they look or how they identify.


S4: My perspective. Let me say this. Doctor Hart graduated from medical school in 2016 and I graduated in 1973. And so I went to a medical school 50 years ago when I was totally against even mentioning race , because at that time it appeared that when somebody identified a black patient , they treated them differently. And so we fought to say , don't even mention the race. Then we went through a period where we started looking at ratio data in a descriptive , comparative way and seeing that there were real differences in outcome. And I've been advocating that we should consider race. I'm not sure I like the term race based medicine , but comparative because that's how you define the differences. So in the beginning , I want to suggest that I don't believe clinicians or researchers should take this discussion to suggest that we should not consider race in medicine at all. The problem , as Doctor Hart talked about , was when we incorporate race in these , what we call pooled cohort equations or algorithms that actually can cause harm more so than help. And one article that I read in the New England Journal of Medicine concluded that before we use race , we should apply three principles one , if we're going to use race , is the data good statistical analysis based upon that use ? And as he said , in the glomerular filtration scenario , there really there was some data , but it was false data and false assumptions. The second is if there are differences , is there a plausible explanation for those differences ? And in the glomerular filtration rate , I don't really think they looked at what the plausible differences were. And then the third is if you're going to use this tool , is it going to make things worse , exacerbate disparities or not ? And as we look at not just the glomerular filtration rate , but other tools that have been used throughout medicine , we're finding the same thing with the glomerular filtration rate that they're being used. But there are unintended consequences with actually causing more harm to certain populations than others.


S5: There were patients who were denied access to kidneys or had delayed access to the transplantation list. And some of those patients worked at our hospital and they were staff members. They were executives , they were frontline clinicians. And they actually we have a colleague who benefited from having the equation appropriately assess her kidney function using 2021 standards. And she received credit for years that she would have been on the transplant list , and it actually saved her life. He received a kidney transplant , and she's doing very well.


S4: Um , I , I think , uh , to to talk about the GFR , uh , the articles suggest there were , um , uh , black patients. First of all , we got to realize black patients have three. Four times greater risk of in stage renal disease than whites. They're on dialysis at higher rates than other ethnicities , yet they have to wait longer for a life saving transplant. And because the kidney donors are so limited , many times they are on a waiting list and they use algorithms to determine who gets a transplant and who doesn't. And because of the formula that suggested that blacks had better renal function than others , sometimes they waited longer than they should have. And so by removing it , hopefully more more will move up the line. How much this will say in cardiovascular disease. Another area is in obstetrics where they use criteria as far as a woman's risk of giving vaginal delivery after having cesarean sections , and suggests that blacks are at greater risk of complications and therefore get more cesarean sections than whites.

S1: Doctor hood , you , um , have been challenging these these algorithms and tests for years. There are other tests that need to be done away with as well.

S4: Uh , there's a American Heart Association guidelines to heart failure for what they use to evaluate risk of somebody being admitted to the hospital with acute congestive heart failure , as far as whether they are high or low risk. And using that formula , they give white high risk where blacks are lower risk when I saw that , that made no sense because blacks have higher rates of congestive heart failure , higher rates of cardiovascular disease. And the rationale for that is not clear. Maybe they're at higher risk because they're white. And getting access to processes that blacks are not. Um , the danger of whites being classified as higher risk. They tend to get okay , the higher risk. Therefore they need a referral to cardiology and cardiac Cass versus these low risk don't. So that's one consequence of misuse I think of the data. There is one that I use today , but I understand is going to be changing that I found may have some very , uh , positive uh , uses in the African American community. And that was the American Heart Association and the uh , Arterial Cardiovascular Risk Estimator for ten year cardiovascular risk. I'm in my office one time , and I got a 50 year old African-American male , and I'm putting in his numbers for his blood pressure and his cholesterol and whether he smokes and whether he has diabetes. And his risk was 25% risk of having a cardiovascular event in ten years. And without changing any numbers , I switched him to white and it went down to 15. When I switched it to a black female , it was higher than the black male. And I started asking my colleagues , what is this about ? So the first concern was , well , maybe there's something wrong with the data. Well , there was a Jackson heart study , and they used these risk predictors and found that in the black population it was fairly accurate. So although when they use race , uh , it was measuring something. The problem with it was that for whites and blacks it was probably fairly accurate. But for other ethnicities it was not. And I understand they're now looking at a new tool that doesn't include race. And my concern with that new tool is will it now decrease or underestimate the risk of African Americans. So that's what I mean by we have to apply those three principles. Certainly race is not a biological measure , but it may be measuring the physiological responses that blacks have in life.

S1: Coming up , doctor Rodney Hood talks about when considering race may actually be helpful in health care.


S1: You're listening to KPBS Midday Edition. Welcome back to KPBS Midday Edition. I'm your host , Jade Hindman. We've been talking about a racially biased kidney test that kept thousands of black patients from receiving transplants for decades , and what it highlights about medical racism in health care. Right now , I'm speaking with two physicians about how racial bias influences their medical practice and what can be done to mitigate harm. I'm speaking with Doctor Rodney Hood , president and chairman of the Multicultural Health Foundation and a physician and expert on health disparities , medical history and racism in medical care. Also , Doctor Lou Hart , he's medical director of health equity for Yale New Haven Health and assistant professor of pediatrics at the Yale University School of Medicine. Doctor hood. Now , I want to talk about medical mistrust among black patients. I understand you recently visited Montgomery , Alabama. To learn more about this. Tell me about that experience and what you learned.

S4: I still have not gotten over my trip to Montgomery. So , um , Montgomery has , uh , equal justice , uh , Legacy Museum , in which a gentleman by the name of Bryan Stevenson , who was an attorney , did research and built a museum based upon , uh , lynchings that have taken place over the past several hundred years. And he's documented , uh , I think , over 6000 lynchings and put a memorial there. Um , what he's also done is created a museum that told the history how we got there. So what does this have to do with health ? I , uh , have a talk , and it's a theory. I call it , uh , PTSD , post-traumatic slavery disorder and postulating that a lot of the chronic illnesses that we see today in African American community , uh , can be traced back to that time period. One of the greatest risk factors for African American folks is hypertension. We cannot totally explain why African Americans have greater hypertension and cardiovascular disease in other populations. I don't care where we go. And , uh , yet they're , uh , social determinants of health is income. There's weight , other comorbidities. But when we look at all those factors , we still see race as an independent factor. And I asked the question , are we actually measuring not biological markers with that population , but are we measuring physiological responses to the chronic toxic stress of being a black person in America ? Now , I know that's controversial , but there's actually research now being done on that , measuring what they call the allostatic load , uh , where blacks , black women have higher rates of allostatic load is measured by , uh , stress hormones , you know , in that type of thing. So I think more research needs to be done along that line.


S5: Um , there is a really solid developing literature base means a lot of things are being written about it in terms of what he's describing as embodiment , research or the allostatic load , and it's actually quite compelling. Um , yes , there's a blueprint , your DNA , but there's also other things that tell which DNA to be active in which to not , and that changes based on the environment you live in. So we actually see some pretty compelling research to show that people's DNA , which is a marker of aging , is shorter if they've experienced overt discrimination in the United States. So I do think that , you know , the brutal transparency is actually going to be pretty eye opening if in real time , I have access to data that shows I'm treating people differently based on race in a way that was unbeknownst to me , not as an intentional way to make sure that I'm potentially being more aware of differences that are happening in my population or the people I get to serve. Um , but I definitely want to make sure that at the end of the day , we hold someone accountable for this. Um , because I don't know when in America's history we've officially said , okay , no more racial discrimination. America's long legacy still lives with us today. And I just want to make sure that two Doctor Hood's point , we study that at the individual level , that we don't just do it all in four big groups , but we really do the critical rigor to understand how is this showing up in the person right in front of me ? And wow , a lot of the a lot of the characteristics that this person have seems to be in their community , and they have a lot of similarities with this and that , because at the end of the day , once we can better understand these things that we have historically been uncomfortable to talk about. Probably still currently. It still makes people uncomfortable , but it's important to pretend like this is going to help all of us. Personalized medicine how to improve the care and experience for everyone , not just for those who have been hurt the most , but yes , those who've been hurt the most stand the most to benefit from a system that makes it better for all of us.

S1: A term that I heard both of you all mentioned is Allostatic load. For those who don't know.

S4: And the more stress , the higher , the less Stacy's in. And if you measure that , they call it the allostatic load. And we know that stress hormones , uh , can cause more in stage disease. Um , the other one we haven't mentioned is called aces , and that's adverse childhood events. And there was a study that actually first took place here in , uh , uh , San Diego at Kaiser in the 1990s , where they looked at patients who had significant adverse childhood events and the ones that had had the higher number or a scores as they got older , had higher number of diseases , asthma , diabetes , cancer. This was done at Kaiser. Most of them were white , but there was a subgroup of black and Hispanic. Their Ace scores were higher than whites. So the chronic stress of being black , whatever that is , causes more stress , causes a higher allostatic load , and that causes physiological response. That's what I meant by biological. You can have two identical biological folks. One is under stress , the other isn't. The one under stress will probably develop more diseases than the one who isn't. Hmm.

S6: Hmm.

S1: Well , you know , I'm curious , Doctor Hart. What should black patients do to advocate for themselves ? Since every doctor , um , is perhaps not factoring in the inaccuracy in some of these tests that have racial biases.

S5: Ultimately , education is key. But in quality and safety , we describe education as a weak corrective action. People tend to hear something one day and maybe forget about it in a couple of days. So I do think that there needs to be a heightened awareness. I do believe that people need to continue to understand that science and medicine's and evolving practice. So as our patients begin to reckon with the real consequences of you might have been my doctor , who I loved and trusted , might have been treating me differently because of my skin color , and it wasn't helping me get better care. I think that that's a really tough pill to swallow , especially given the recent crisis and lack of trust in public health institutions , um , in really each other. But even with the , the field of medicine physicians and nurses. So I think it's really important for healthcare , um , and the clinicians , the people who serve patients every day to have that honest , transparent conversation around what the past , what had happened in the past and what we plan to do about it together moving forward. The biggest thing that gives me hope at night is that the health care system , the biggest constituent or stakeholder , is the quote unquote customer , the patient , but they are the least empowered in the whole transaction. Um , medicine has become extremely commercialized , and patients seem to be just products of the system as opposed to well paying customers. And I do think that a more informed and empowered patient , as we switch from kind of fee for service models of volume based healthcare to more patient centered , patient driven , what's important to you and how do we work on that to make you as healthy as possible and in doing so , lower costs. So I do think that clearly education , but it's actually empowering patients in payment reform where patients have more stake. Um , in terms of dictating what are the quality metrics , how transparent we have to be with what describes high quality , safe care.

S4: And and I think empowerment of the patient in education of the patient. But a significant group of patients that will happen. Study write your questions down. Ask questions when you see the physician. How my Multicultural Health Foundation has implemented programs with populations that don't have that education , or don't feel comfortable dealing with that different power structure when they go see the physician. And so what is the transformation ? Taking place in the health care system to empower them in America. We always talk about individual empowerment. I think we have to think of a system that collectively empowers them in. One tool is bringing on a true community health workers. These are individuals that will help a patient navigate the system , that will actually go to the doctor and help the patient ask the right questions and navigate the system better.

S6: And I know that that.

S1: Research has shown that no matter how well educated some patients are , they still receive disparate treatment when walking into a doctor's office.

S4: For the most part , I'd have to say yes. And I don't really think , um , we went back to what provided by into as far as what a lab means and what a lab doesn't mean , um , I think there's this whole issue of implicit bias that is very strong in the provider community , whether we want to realize it or not. Um , yes. Data suggests that you may feel comfortable with a provider that looks like you , but I have some providers that look like me I wouldn't want to send my mother to. So , uh , and there are providers that don't look like me who I feel will give my patients , whether they're black or otherwise , better care. So I think you can't look at providers while this is a white provider who's telling me the wrong thing. I think you have to evaluate them individually. And even if we wanted all black patients to go to black providers , that's impossible. There isn't enough of us. And so there are there are many non-black providers out there that get what I'm talking about , what Doctor Hart is talking about. I think an area that I get concerned with is , uh , behavioral health. Um , uh , I don't think there's enough culturally sensitive behavioral health providers out there. I very commonly get patients say , um , I want a female behavioral health , or I'd like a male or I'd like , you know , in and many times you don't have that option. And I think in behavioral health , sometimes you may have to go to several providers before you find one that you feel comfortable with.

S1: Well , we see how eliminating the racial bias in GFR test , um , we see the impact that that is having.

S5: There is much more work ahead , but I think when it comes to solutions , we need to be ready for conversations around how these outcomes seem to persist over time , and what are some of the ways that we can either transparently accept that this is what we want , this is the system that benefits us the most , or how we actually peel away and start to realize that , well , profits are great and people can thrive in a in a society that's built like ours , people are are also left behind. And it's just whether we want that to happen in health care or not. Our current practice and the experience speaks for itself. So I think in ways in which I'm very optimistic about solutions coming forward is an actual recent revision to a federal law , the Affordable Care Act. And there's a section of it , section 1557 , that now explicitly makes it a against federal law and a violation of civil rights acts. And of the Affordable Care Act to use a race based clinical decision support tool that discriminates on the basis of race , age , sex , national origin or color. And this is going to be very interesting to see how health care systems. We have 300 days to review all of the algorithms or all the clinical decision support tools that use these characteristics , and how health systems are held accountable with financial liability , with reputational um , tarnish will be really interesting to see play out because the federal government is clearly sending a message that , well , we want to acknowledge that there is difference between persons. We want to ensure we're doing something about it. So I really , truly believe it's going to be an uphill battle given how entrenched the current system is , but that we can switch and make continued progress to how we incentivize hospitals. I am very optimistic that payment reform can incentivize good behavior , can incentivize providing patients with doulas and community health workers. Providing more resources so that a good outcome brings the most revenue. I really think that we can do something in a system that has so much promise , given the amount of technology and a lot of the brilliance that exists here in America and abroad. I really think that we can can make this system better for all of us. Maybe that's just me being a consummate optimist.


S4: I think one of the solutions is if our health system can produce more researchers on the level of doctor heart , I agree with most of what he said and just about everything he said. And if we can implement half of what he said , I think we'd be a long way in in success.

S1: This has been a fascinating discussion and one that could go on for another hour at least , I'm sure. Uh , I've been speaking with Doctor Rodney Hood , president and chairman of the Multicultural Health Foundation and a physician , an expert on health disparities , medical history , and racism in medical care. Thank you so much for joining us.

S4: Thank you for having me.

S1: And also Doctor Lou Hart , he's medical director of health equity for Yale New Haven Health and assistant professor of pediatrics at the Yale University School of Medicine. Doctor Hart , thank you.

S5: Thank you so much for having me. This was such an amazing opportunity and a great discussion.

S1: That's our show for today. I'm your host , Jade Hindman. Thanks for tuning in to Midday Edition. Be sure to have a great day on purpose , everyone.

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File photo of Adrian Perez undergoing dialysis at a DaVita Kidney Care clinic in Sacramento, Calif., on Monday, Sept. 24, 2018.
Rich Pedroncelli
File photo of Adrian Perez undergoing dialysis at a DaVita Kidney Care clinic in Sacramento, Calif., on Monday, Sept. 24, 2018.

For decades, a racially biased lab test prevented thousands of Black patients from getting kidney transplants. The eGFR determines kidney function, based on how much a waste compound called creatinine gets filtered from blood.

Back in 1999, scientists began calculating GFR differently for Black and non-Black patients by using a "race modifier," due to a faulty assumption about muscle mass and creatinine levels. That modifier inadvertently made the kidneys of Black patients appear healthier than they actually were.

In 2022, the United Network for Organ Sharing (UNOS) required all transplant centers to use race-neural tests, instead. Now, thousands of Black patients who were affected are being moved up the list.

Local transplant centers, including UC San Diego, SHARP, and Scripps Transplant Centers, told KPBS they've made the move to race neutral calculations.

According to Scripps Health, 14% of African American patients on their kidney transplant wait list received an adjustment to their wait time.

On Midday Edition Monday, host Jade Hindmon spoke with two physicians to discuss the ramifications of the eGFR test and the use of race in medicine.