The Healthcare Divide – Episode 1
In modern medicine, race correction can influence a wide range of medical outcomes, from predicting whether you’ll have a successful vaginal birth after a C-section, or whether you’ll develop kidney stones, to the probability of bone fracture. In some cases, life saving treatment may be withheld until you get sick enough to qualify – lifesaving treatment like a kidney transplant. The Healthcare Divide speaks to a patient who learned this firsthand, a research advocate who has spent her career working to understand and undo the harms caused by racist assumptions across the medical system, and a nephrologist whose clinic helps people at different stages of kidney disease.
Charles Cook, donor recipient
Lydia-Joi Marshall, project lead at the Health Commons Solutions Lab and President of the Black Health Alliance
Dr. Bourne Auguste, nephrologist at Sunnybrook Health Sciences Centre
The Healthcare Divide
Charles Cook As a black person in Canada, I was 50 to 70% less likely to receive a living kidney donor transplant than a white person.
Dr. Alika Lafontaine Canada’s health care system should provide equal access to everyone. But in reality, it’s a system of haves and have nots. I’m talking to the people who have experienced these inequities firsthand and those who are working to create change.
Lydia-Joi Marshall Good people don’t want to believe they’ve been doing bad things over and over and over. And it takes a lot of courage to say, well, we have to dismantle this whole system.
Dr. Alika Lafontaine Medical practice and medical leadership are filled with folks who have biases. Today, we’ll look at one way that inequality has been built into the system itself. I’m Dr. Alika LaFontaine, an anesthesiologist and the first Indigenous physician to have led the Canadian Medical Association. From the Canadian Race Relations Foundation, this is The Healthcare Divide.
Dr. Alika Lafontaine Very nice to meet you. Thanks for making the time.
Charles Cook Thank you for having me. It’s good to meet you, Alika. I like your name, and that’s cool. I’ve never met an Alika before.
Dr. Alika Lafontaine Oh, yeah. It’s a Pacific Islander name, actually.
Charles Cook Right on. I was going to guess.
Dr. Alika Lafontaine This is Charles Cook. Growing up in the southern United States, Charles was a kid with a lot of promise.
Charles Cook Right out of high school. I received an appointment to the United States Naval Academy. I never applied to them. They got my SAT scores and said, “Hey, basically, you’re a Black kid with a brain. Every university in America is going to want you. But the difference is we’re the only United States Naval Academy that you’re ever going to hear from.” So went through all the tests, received my appointment. And I remember that day Indoctrination Day, July 7th, 1986. Outstanding on what and feel with 1500 of my newest brothers and sisters and just kind of… I did this. You know, thousands of people applied for this, but I did this. And then that’s when they found the heart condition and everything went away. So, you know, that was the end of that.
Dr. Alika Lafontaine That heart issue derailed Charles military career. Later on in life, his health issues escalated. After having a stroke, he moved to Canada and ended up needing two organ transplants.
Charles Cook I received a heart in 2016 and then I received my kidney in 2017 as a result of complications from an operation that was supposed to prolong my failing heart. That operation saved my life, but it caused my kidney function and I wound up needing a kidney transplant.
Dr. Alika Lafontaine It was early in this process when his doctor first brought up his race.
Charles Cook My cardiologist said, “Hey, your CK is high” – creatine kinase is what that stands for – and he said, you know, “your heart seems a little worried about it, but some people just have high CK levels.” And he said, “Black people, it’s common because you have more dense muscle.” And this is kind of, okay, all right. If that’s the explanation, then that’s what it is.
Dr. Alika Lafontaine He didn’t think much more of it at the time. But later on, while speaking to another doctor who works for an advocacy project, he learned that race based adjustments to his kidney function tests could change him from a patient that receives care to one that doesn’t. That measurement of kidney function, called the estimated glomerular filtration rate or EGFR for short, gets adjusted for African, Caribbean and Black patients in Canada. The use of racial caricatures in medicine goes all the way back to the writings of Hippocrates and Aristotle around 2400 years ago. In modern medicine, race correction can influence a wide range of medical outcomes; predicting whether you’ll have a successful vaginal birth after a C-section, if you’ll develop kidney stones, or the probability of bone fracture. In some cases, life saving treatment may be withheld until you get sick enough to qualify – lifesaving treatment like a kidney transplant.
Charles Cook Basically, it’s saying, “Yes, you can get on the list for a kidney transplant, but you’re going to have to wait longer because it’s going to take you longer to get on the list.” And that made me mad every time I looked at it because I received a deceased donor kidney for my kidney transplant in 2017. And I had learned by that time that the best option was to have a living kidney donor transplant. As a Black person in Canada, I was 50 to 70% less likely to receive a living kidney donor transplant than a white person.
Dr. Alika Lafontaine Having grown up in Georgia. Charles saw uncomfortable parallels in history.
Charles Cook The EGFR makes me think of, you know, we studied the civil rights movement growing up in the South. The racial lines were very deep, very clear. And I just remember seeing the movies with the segregation signs in it, like “whites only”, “coloured only”. And you can go and have the service and it’s supposed to be separate but equal. That’s exactly what I flashback to when I found out about what the EGFR was.
Dr. Alika Lafontaine I’ve been working as a rural physician for more than 12 years, beginning as a medical student 21 years ago. Midway through my anesthesiology fellowship, I came across a book called How Doctors Think by Jerome Groopman. There was a chapter about doctor intuition, the gut feeling you have as a clinician when you first see a patient. I admired professors of mine who seemed to be able to grasp complex diagnostic patterns with minimal information, like Dr. Gregory House on the popular TV show House, M.D. 80% of the time, your clinical gut feeling is right. What you see is what’s actually going on. But 20% of the time, you’re wrong. People call this the 80/20 rule. When you dig into that 20%, it’s not always the benign, “we’ll try again … sorry, my mistake” type of wrong. It can be the life-altering, life-ending, deadly kind of wrong. Assumptions and biases can also get baked into the system and alter diagnostic tools so people like Charles have to be more sick to qualify for the same care that other patients get. This issue is far reaching and affects medicine in many ways. But if we’re talking specifically about kidney transplants, we can trace exactly how it happened. I reached out to Lydia-Joi Marshall to dig into this further.
Lydia-Joi Marshall I’m a genetic researcher but really work in the space of health equity. So I used to play in lab benches, but now I use that knowledge to sit and see what are the disparities in health research.
Dr. Alika Lafontaine Lydia-Joi works with the Health Common Solutions Lab in Toronto and is President of the Black Health Alliance. She’s spent much of her career trying to understand and undo the harms caused by racist assumptions across the medical system.
Lydia-Joi Marshall My work really focuses, especially in communities that have been marginalized by race. As a black woman, I work especially in diverse black communities, but really just helping people across the spectrum that we see the gaps in their health outcomes.
Dr. Alika Lafontaine Lydia-Joi remembers a key moment that set her down this path. She was at work at an organ transplant center and overheard a conversation between colleagues.
Lydia-Joi Marshall They were working up somebody who was supposed to receive organs. And I heard them asking, “And what is the ethnicity of this person?”. They were unconscious because you have to be on life support. This person was on life support in order to receive. And I was like, “Why are you asking that question?”. You know, I was a new grad, and so I was like, all my book learning, I was ready to challenge everybody. And they told me, “Oh, yes, yes, we just – this is how we match, this is, etc.”. I started looking into it more and I was like, this doesn’t make sense to me. And what I have learned, you know, as a genetic researcher, is that race is a social construct. And so I always question when it’s being used in a clinical practice, how is it being used both to determine, you know, who is receiving, who is giving, who is at this level? And it was something that was very jarring for me. No one else looked like me in the room, though, so nobody else seemed to be jarred by this. But it started this questioning.
Lydia-Joi Marshall And when I started speaking to patients from my community who go and have regular blood work done and have regular urine analysis done, they were saying, “Yeah, you know, we see this line on our lab reports that we received that says corrected for being African-Canadian or Black, depending on the lab that you come from.” And they’re like, “We don’t know what it means, but it’s just always there.” And their assumption was that it was that it was something in their favor. And when we started speaking to nephrologists and learning, well, it actually is correcting it to say that you’re a little bit healthier. You know, the alarm that I was seeing in patients that I was supporting in community made me really say, you know, why is this happening here and how has it impacted people’s lives?
Dr. Alika Lafontaine So how does this affect outcomes and survival rates for black patients who have kidney failure?
Lydia-Joi Marshall Well, we know just on a very broad level, it’s 50 to 70% less likely that a Black patient will even get a living kidney donor, which equates to a higher mortality rate. I think on top of that, there’s a really high mental impact on it. As I said when I spoke to patients who see this every time they go in and they’re like, “I’m being corrected. What am I being corrected for and in what direction?” I think it impacts even how you perceive yourself, how you perceive you’re valued in the system, and why are you being treated differently. So if you’re already going through this and you can’t trust those who are treating you or the system or the science behind it, I think that in itself also impacts your quality of life or ability to heal.
Dr. Alika Lafontaine Maybe you could share some of the stories that you hear from Black patients who are going through this and in need of a kidney transplant.
Lydia-Joi Marshall I actually was part of a study. So when I started this, we actually went out and spoke to nearly 100 Black patients, some I should say, some were patients, some were community members, some were caregivers. We had one patient who shared with us that, you know, he eventually did receive a kidney transplant. But when he learned what that value was, he was actually, like, very anxious and upset to think, well, could this have happened earlier? There were so many other ailments that he’d had before he’d actually received his transplant. And he’s saying, well, you know, “Why did this take so long?” I’ve also heard physicians from, you know, outside community say they’ve seen that especially their Black male patients might have died waiting for this kidney transplant. And they look and look back and say, “Well, what were the factors? Was this one of them, did we correct them out of it?” You know, I don’t want to give the impression that, again, that it’s on purpose or that everybody doesn’t receive it. There are Black patients who do receive kidney transplants, but the disparity and the gap between it is so large that we have to look at what are the factors.
Dr. Alika Lafontaine I wanted to learn more about how the practice of race correction in nephrology came to be. How exactly did we end up with a system where one group of people needs to be more sick than another group to qualify for the same treatment? So I reached out to Dr. Bourne Auguste, a nephrologist at Sunnybrook Health Sciences Center in Toronto. His clinic helps people who are at different stages of kidney disease.
Bourne Auguste I’m biased in saying that it probably might be one of the most important organs.
Dr. Alika Lafontaine He explained why people began using race correction to adjust abnormal lab tests in his field.
Bourne Auguste So when they did studies back in the 1970s, the kidney function, they tried to essentially understand the way the kidney works in terms of the filtration factor. And so we have kidneys that we have that have played an important role in terms of flesh and blood, getting toxins out on a daily basis and also getting excess fluid out. So we needed a way in terms of clinical practice to assess somebody’s kidney function. There is a biomarker in the blood called creatinine. The Trautman is a measurement of how well the kidney is filtering toxins out of the body. The higher the correct measurement, the lower one might expect the kidney to be working. And we can use the creatinine as we’d call a “biomarker” to estimate how well the kidney is filtering. So as a result, they needed to have a formulation or an equation to quickly take a creatinine value, plug it into an equation and say, hey, this is what your estimated kidney function is, based on the creatinine value, based on your age, based on your gender, and based on your body size.
Dr. Alika Lafontaine And then there’s that final adjustment introduced in the 1990s, the one based on race.
Bourne Auguste So there were some flawed assumptions back then that people of African descent, Black people, tended to have bigger muscle mass, which actually stems from this, you know, racist ideology that for some reason, you know, people of African descent are still genetically inferior, they have not necessarily evolved ina particular way, and a lot of those notions essentially accounted for trying to see that the difference in muscle mass needs to be corrected in this population. So I would plug in a value in that correctness. And I would say while this patient appears to be Black as a result of this, I need to adjust the equation for that reason. And this adjustment in the equation would in turn falsely increase. The filtration marker for many Black people was only until the last, I guess, three, five years where people realized the significant injustices that were derived from that within the nephrology field, that something needed to be done about it.
Dr. Alika Lafontaine Let’s put the history aside for a minute and look at how doctors put this race correction into practice. How does a physician even determine what a patient’s race is? As Dr. Auguste said a moment ago, it’s a patient who appears to be Black.
Bourne Auguste Yes, I understand the use of genetics in terms of genetic variations to provide specialized care. That’s different. That’s very different. There is scientific merit in that. But I think sometimes we can slip the use of somebody’s appearance to equate it to equal genetics. And as a result, we can just base recommendations on that. And that is not necessarily scientific. What do we see of mixed race individuals? Do I see 50% Black? I do. I give you a half a score. If your hair essentially looks different with within it, typically, how is that a very scientific approach?
Dr. Alika Lafontaine Lydia-Joi Marshall is a geneticist by training, so I asked for her perspective on this. You know, I’m mixed ancestry, you know, I’m Pacific Islander and Indigenous. If I’m around Metis people, they know I’m Metis; if I’m around Pacific Islanders, you know, they see me as Pacific Islander. For folks who are looked at this way by clinicians, is it actually a reasonable way to assess, you know, your ethnicity? I mean, you’re a geneticist by background. That seems a little odd.
Lydia-Joi Marshall I think, you know, like you, I would consider myself of mixed ancestry too. I’m West Indian, which we don’t know even what our ancestry is. So I find it really funny, like, if I did one of those DNA tests, I would probably show up as more Portuguese than I would African. But yet when somebody looks at me, I would be recorded in the same category as somebody who is from the African continent. And so I would say that it has been a subjective process. It was, you know, the original taxonomy. It was, like, people who were the same as we did the animals. Oh, we look at this person and we look at this person, and they must be a separate species. But at the time when these taxonomies were made we didn’t have the ability to look at genotypes. We didn’t have the ability to look at cells and say, well, are there actually patterns other than, you know, the color of our skin or other adaptive features that have happened?
Lydia-Joi Marshall On the other hand, there are certain, you know, diseases that are higher prevalent in certain groups because, you know, the first ten people who were there and all populated that area might have had a genetic variation that made that higher in that region or gave them an advantage. So, again, we have to question every time. But what I find in general, you know, we have people looking at one another and guessing what they are. And, you know, how does that translate into clinical practice? I think it’s something that doesn’t anymore, especially now that we have tools to actually look at things at a cellular level. So I would say that it’s a bit of an antiquated process. I think it is rooted in racism. I will say also because I think it’s not a neutral distinction, it’s not just people look different, there’s definitely a hierarchy that was assigned to why these distinctions are made.
Dr. Alika Lafontaine Dr. Auguste points out that when we, in the health care system, make incorrect assumptions about a population, the problems those assumptions create go beyond that moment in time or the care that individual receives. Assumptions have lasting effects on communities.
Bourne Auguste A lot of patients in these trials, particularly within the Black population, have been underrepresented. You know, we talk about new drugs that come on the market, you know, we hear about the SGL2 inhibitors when ACE inhibitors came out, some of these trials had an underrepresentation of people within the Black community represented in their trials. And as a result, that could actually have an impact in terms of how we decide what therapies are best suited for the population. And that in turn can actually lead to, again, the suboptimal care. And we have this notion in practice saying, “Well, I’m not really sure how this will work in the Black population. It wasn’t really studied.” It wasn’t studied because we didn’t make the effort to enroll patients within that community or their kidney function was above the cutoff.
Dr. Alika Lafontaine So that’s a really important point, you know, if you’ve mislabeled a population or demographic – no matter who it is – as healthy when they’re not, you tend not to build health care infrastructure in that direction.
Bourne Auguste Exactly. It has impact on what kind of medications you qualify for, insurance policies, you know, things such as what your premiums go up based on when you meet the CKD category or not, whether or not you actually get the CT scan. The most basic things stem around from formulating an equation and estimating kidney function. And a lot of it in our healthcare infrastructure policy allocation of resources stems from that because, you know, as much as it would be great to provide care to everybody, we can’t sometimes. We have to create algorithms and structures in place to allocate to those who need it the most, but sometimes those who need it the most tend to be excluded for nefarious reasons, which stem from sometimes, you know, ill advised approaches, including risk correction and then equations. And as a result, that tends to divert care from people who desperately need it.
Dr. Alika Lafontaine As Dr. Auguste mentioned in recent years, more and more folks are questioning the use of race correction across medical practice. Some doctors are choosing not to follow those guidelines anymore, but many still do.
Bourne Auguste Unfortunately, what has happened here is that it continues in practice, It continues in so many different areas, and it has not led to an overhaul that we would want to see in the system. And I think it requires, essentially, a coordinated effort across different agencies, medical agencies, medical organizations, to address this. And once this happens, it also needs to occur in concert with the community to ensure that the change that we are going to impact is studied moving forward, what impact it’s going to have based on outcomes for patients. And again, it won’t be perfect, but it will be a positive change compared to the practice that is currently being used here, where we give people the opportunity to apply a bias if they see fit.
Dr. Alika Lafontaine Some healthcare professionals assume that because the practice is in place, there must be a reason for it.
Lydia-Joi Marshall People don’t like to believe that there were .. these types of prejudices and racisms can also seep into this area because we like to put our trust in this, that well, it must have been rigorous. You know, there’s no way we would be doing this and perpetuating harm over and over. And so I think it continues because, you know, good people don’t want to believe they’ve been doing bad things.
Dr. Alika Lafontaine When you’re looking at race correction of lab work specifically, have you ever had someone insist that the judgment, the adjustment was reasonable, even though there’s a lot of evidence, well, all the evidence to the contrary?
Lydia-Joi Marshall I think now there’s been a lot of work done in the U.K. and the States that, like it’s irrefutable at this point. But at the beginning, direct pushback to say, you know, “There’s no way that this could be incorrect. It’s a scientific calculation.” I had that conversation repeatedly for years that, you know, maybe you don’t understand. And even when I was like, “Well, let’s look at – let’s go back to the study then. First of all, let’s look and see like how many Black patients were included in this research for you to be able to make these sweeping judgments that there’s a difference.” And you go back and you see that they weren’t, it was not included. But there’s this steadfast belief that this is what we learned. This is here. It’s in paper now, it can’t be changed. I think now, unfortunately, we’ve had to speak in this data and empirical language to prove that it was true, when it should have been the voices of the people were true.
Dr. Alika Lafontaine Until we have top down change, the work of educating and informing patients about this will fall on health care workers, grassroot folks providing frontline care. And that can be a difficult interaction. So, I’m now a patient who’s experiencing this race-based correction. Whoever’s providing me care has decided that I look a certain way, that being Black has influenced my genetics and, you know, the way I’m reacting to the disease. Can you describe, you know, how a patient would react in that situation?
Bourne Auguste Within the Black community, there’s been an understandable mistrust of the system for a variety of reasons. So you can imagine if I’m going to tell a patient who is Black, “Hey, by the way, for many years we essentially said that your kidney function was this, but it was a little bit higher than that. Well, what is a resulted is that it delayed maybe your access to a kidney doctor by a year or two, and maybe we could have started you on medications earlier that could have slowed your progression of kidney disease down. But now, based on what’s happened, it’s proceeded a lot faster because we haven’t been able to connect you to a kidney doctor. You haven’t seen the appropriate resources. As a result, we’ve got to start you on dialysis.” Contextualizing that to somebody who was already had a historical mistrust of the system and you tell them that now? Its further going to confound that mistrust. And we have not done a good job communicating with our patients about how we provide care to them, what the purpose of the equations are and what the implications are. And that just goes across medical practice because I imagine it’s busy. We’ve not necessarily had the time to inform patients and to suddenly say, “Listen, I think we got this wrong for several years and we need to fix it now.” Its not going to allow for a patient to bestow a lot of trust in us moving forward.
Dr. Alika Lafontaine How would you help people understand what is the good uses of race-based data? And when do you know that you’ve gone into the more negative, harmful uses of race-based data?
Bourne Auguste I think race based medicine, in terms of the practice of using race to provide medicine, is dangerous. But I think using race based data to address disparities in care and understand how we can close the gap between subpopulations and within the general population is the positive impact that we can use. I think we need to be honest with ourselves that race is in fact a social construct, that the construct exists, and to ignore that it exists actually is detrimental to various subpopulations. To understand the impact that it has in terms of the socioeconomic impact of populations, demographics, education, access to care and all of the social determinants of health are quite important. We cannot fix something that we don’t understand, but we should not be using race as a means to say “This is the type of care I’m going to give you based on the way you look.”.
Lydia-Joi Marshall Race does have social health consequences. So if you don’t ever ask a question, you do not know why you are applying that information. So I wouldn’t ask you “Where are you from? What’s your ethnicity?” if I have nothing to do with this information. Right? Because even in asking the question, you’re impacting somebody’s health. You’re impacting whether they trust you, you’re triggering them in a certain way. So I think my advice always to health care professionals are really understand why you were asking the question if it’s to do with race and ethnicity, and what is your responsibility now in using that information once you’ve asked it? If it is for a social connection, be transparent. Say, “Hey, we know we don’t treat this group appropriately. We want to know, we want to take this information so that we can do better.” Be transparent about that. If there is a clinical difference, be transparent about that and educate yourself to make sure that there really is. You know, if you are really looking at, “Hey, you have a higher risk of X, Y and Z, and then therefore I had to ask and we’re going to do other diagnostics and that’s okay.” So I find health care professionals will just shy away from it altogether: “Okay, fine. Race correction or raise questions are bad. Let’s not talk about this at all.” That’s not the answer either, because we have – we wouldn’t even know that these type of disparities exist if we hadn’t asked these questions. And so it’s asking in context and being transparent about that to your patients and being transparent for yourself to know what the limitations of asking these questions are.
Dr. Alika Lafontaine If you take yourself back in time to before you realized how big of a problem this was and compare yourself with how you are right now, how has this changed the way that you see the Canadian health care system?
Bourne Auguste I feel like I have a new pair of eyes, you know, like I am an immigrant here. But I was raised most of my life here, and I think I had such utter trust in just, well, this must be what works. And seeing this, it opened my eyes to now question every step of the way. Fortunately, sometimes when I ask questions, there are things that are better. There’s things that have come forward. But I can’t walk into a space without questioning “Why are you doing that? Why are you asking me this?” Like ,I’m the worst person to give any questionnaire to, because every question I’d be like, “What is this being used? Who is it going to? Will it be weaponized against me?” And they’ll be like, “Hey, we were just doing a pedicure.” Or maybe we should. We don’t need to debate this. But yeah, it has completely changed me. I feel like, I feel like I literally had child’s eyes before. Just very trusting in a system. And people are like, “Well, there must be a reason.” And now everything, I’m just like, “Tell me what that reason is. Tell me that, you know, and let’s make sure together we understand before we go for it.”
Dr. Alika Lafontaine Charles, do you believe that the health care system can change?
Charles Cook Yeah, because the health care system is made up of people and people if given the opportunity and the incentive to change … see, that’s the big thing is, people are always saying, “What’s in it for me”. You know? So if you can explain to the doctor why it’s important for them to treat everyone the same so that we have a better chance of access to the treatment that you’re supposed to be giving us in the first place, then that is how the system changes as one person at a time, one interaction at a time, I believe. I don’t know that we can just wave a magic wand and say, “Hey, here’s a new rule and then everybody’s got to follow it”, you know? So I think it’s the one on one stuff that’s important.
Dr. Alika Lafontaine Earlier in the episode, I mentioned the 80/20 rule. 80% of the time your gut feeling is right and 20% of the time it’s not. Over time, I’ve come to believe that bias isn’t the actual problem. Bias speeds up decision making and can sometimes lead to faster care when your gut is correct. Good things happen. The blind following a bias and the unwillingness to admit your gut was wrong is the problem. It’s the inability to allow new information to upend what you thought was going on and to redirect you to a different conclusion. That new information may be a patient’s history, new investigations, or realizing that those adjustments based on race weren’t rooted in science and objective data in the first place. Lots of folks see challenging bias as a system level problem, a challenge of taking on the medical system machine and pushing it to turn in another direction. But when you peel back the layers, systems are just people and the relationships we have with each other. Like Charles Cook says, systems change one person at a time, one interaction at a time. So maybe you’ll change a bit based on what you heard in this episode, and maybe you’ll go on to change someone else.