Why Health Equity Matters for Kids and Families – PediaCast 589
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Show Notes
Description
Dr Jennifer Taylor-Cousar visits the studio as we explore why health equity matters for kids and families. We discuss health disparities, medical mistrust, and barriers that impact health outcomes. We hope you can join us!
Topic
Health Equity and Disparity
Guest
Dr Jennifer Taylor-Cousar
Pediatric Pulmonologist
National Jewish Health
University of Colorado Anschutz School of Medicine
Links
Social Determinants of Health
Defining Health Equity: A Modern U.S. Perspective
Race, Healthcare, and Health Disparities: A Critical Review and Recommendations for Advancing Health Equity
Addressing Health Equity and Social Determinants of Health Through Healthy People 2030
Social Justice and Health
Left Behind: The Potential Impact of CFTR Modulators on Racial and Ethnic Disparities in Cystic Fibrosis
Addressing Health Inequities in the Cystic Fibrosis Community
Evaluating Precision Medicine Tools in Cystic Fibrosis for Racial and Ethnic Fairness
Why Newborn Screening for Cystic Fibrosis Fails Communities of Color
Health Inequities, Social Determinants, and Intersectionality
Achieving Health Equity
Episode Transcript
[Dr Mike Patrick]
This episode of PediaCast is brought to you by Nationwide Children's Hospital.
[Music]
[Dr Mike Patrick]
Hello everyone. And welcome once again to PediaCast.
We are a pediatric podcast for moms and dads. This is Dr. Mike, coming to you from the campus of Nationwide Children's Hospital. We're in Columbus, Ohio.
It's episode 589. We're calling this one, Why Health Equity Matters for Kids and Families. I want to welcome all of you to the program.
So, this week we are tackling an important topic, social justice in healthcare and why health equity matters for kids and families. But what exactly do we mean by health equity and how does this concept relate to health disparities? We'll answer both of these questions.
They're buzzwords that you hear about a lot, equity and disparity in terms of healthcare. You know, what exactly do we mean? We're going to take a deep dive on that.
Also, how do things like race history and systemic barriers impact health outcomes and what can all of us do to raise awareness and provide support for children and families who are challenged with access to quality medical care? We'll also discuss medical mistrust and the changes needed to build a more equitable future for kids and families. Of course, in our usual PediaCast fashion, we have a terrific guest joining us in the studio.
Dr. Jennifer Taylor-Cousar is an adult and pediatric pulmonologist at National Jewish Health in the University of Colorado Anschutz School of Medicine. Before we get to her, I do want to remind you the information presented in PediaCast is for general educational purposes only. We do not diagnose medical conditions or formulate treatment plans for specific individuals.
If you're concerned about your child's health, be sure to call your healthcare provider. Also, your use of this audio program is subject to the PediaCast Terms of Use Agreement, which you can find at pediacast.org. So, let's take a quick break.
We'll get Dr. Jennifer Taylor-Cousar settled into the studio, and then we will be back to explore why health equity matters for kids and families. It's coming up right after this.
[Music]
[Dr Mike Patrick]
Dr. Jennifer Taylor-Cousar is an adult and pediatric pulmonologist at National Jewish Health in Denver. She's also a professor of internal medicine and pediatrics at the University of Colorado Anschutz School of Medicine. She has a passion for raising awareness and providing support for those impacted by health disparities. That's what she's here to talk about why health equity matters for kids and families.
Before we dive into our topic, let's pause and offer a warm PediaCast welcome to our guest, Dr. Jennifer Taylor-Cousar. Thank you so much for visiting with us today.
[Dr Jennifer Taylor-Cousar]
Thanks for having me, Dr. Mike.
[Dr Mike Patrick]
Yeah, I'm really excited to talk about this because it's such an important topic. You know, a lot of people think of race as biological and the issue with that is then we can be led astray in our thinking sometimes with in terms of health and wellness and diseases as we think, well, you know, sickle cell anemia only, only affects folks who are black or cystic fibrosis only affects those who are white. But we know that that's not necessarily true and that race is actually a social construct.
Can you, can you explain a little bit the difference between looking at race as biological and looking at it as more of a, of a social thing?
[Dr Jennifer Taylor-Cousar]
Yeah, no, that's a great question and a really, really important point because if you look back in history, these terms were literally defined and race was really established based on physical characteristics like color of people's skin and the way their hair looked and ethnicity also was something that was defined by people, although more based on shared culture and ancestry and language, things like that.
But there really isn't biological basis. And if you actually look through some scientists quotes, you'll see that they are really specific about this. So, for example, Dr. Asante Pabo, who's at Max Planck Institute said that even between Africa and Europe, there's not a single absolute genetic difference, meaning you can't just find one gene that's in all Africans and one that's in all people that are Europeans. They're all over the place. So, it's really, really important to understand that those are social constructs. And so, if you try to tie something that's socially based to something that's biologically based, you're going to be wrong a lot of the time.
[Dr Mike Patrick]
Yeah. Yeah. And I kind of hinted at it a little bit as did you, but what are the dangers then of making sort of clinical predictions based on someone's race?
[Dr Jennifer Taylor-Cousar]
I think that you can very easily misdiagnose people if you try to base a disorder on race. So, you gave the example of cystic fibrosis and sickle cell. So, there are a lot of people who have been misdiagnosed with other things and not treated the way they should be treated because their diagnosis was wrong because somebody based it on their race rather than what was actually happening.
[Dr Mike Patrick]
Yeah. And so, we really need to keep our minds open to all possibilities with all people as we approach the diagnosis of diseases. Another important thing as we think about health equity is something that we in the medical field call social determinants of health.
Just so that we're sort of all on a level playing field as we move on with our discussion. Can you explain what we mean by that term social determinants of health?
[Dr Jennifer Taylor-Cousar]
Yeah. So social determinants of health are really those non-medical factors that influence how people are feeling and how their wellbeing is. So, for example, if you live in an area where there's a lot of pollution, then you're more likely to have respiratory problems, for example.
Or if you live in a very rural area where it's difficult to access physicians, again, your health is probably not going to be as good because you don't have that access to healthcare or if you don't have good education level because the schools in your area are poor. Those are all things that are outside of your direct health, but they absolutely impact your health.
[Dr Mike Patrick]
so, things like housing and food and crime in a neighborhood, as you mentioned, pollution, there's really a lot of social factors that go into our health and wellness. Whether you have a parent who smokes in the house is another one. So, lots to consider.
And as we think about taking care of kids and families, we really do want those in the back of our mind because they really do make a difference in health and wellness. We've talked about health equity. Another term that comes up is health disparities.
What's the difference between disparities and equity?
[Dr Jennifer Taylor-Cousar]
Yeah, that's a great question. So, health equity is really a state of being when everybody has a fair and just opportunity to be as healthy as possible. So, I also think it's important to understand that equality and equity are different.
So, equality is giving everybody the same thing regardless of what they need. Whereas equity means that everyone's got a fair and just opportunity. And then when you think about health disparities, those are the resulting conditions that happen when we don't have health equity.
So worse outcomes for, for example, survival or more hospitalizations, those are health disparities are preventable if we actually fix the problems in the system that led to those health disparities.
[Dr Mike Patrick]
And then at the extreme end of a disparity is really health exclusion where someone really does not have access to the medical system. What are some historical examples in the United States of exclusion in medicine? Because, you know, if we don't study the past, we are doomed to repeat it.
And so, we, you know, want to know sort of where we've come from in terms of history.
[Dr Jennifer Taylor-Cousar]
Yeah. Unfortunately, you know, people think a lot about Brown versus the board of education exclusion from schools. But if you look back at that time, people were also excluded from hospitals based on their race.
So, there were some hospitals where you were only allowed to go to that hospital if you were Black and they were often more poorly resourced. But if you even look further back, there are examples of things like the doctors being excluded from medical school or excluded from societies that allowed them to practice. So, there have been a lot of exclusionary practices that have impacted again, people's health.
[Dr Mike Patrick]
And then that exclusion sort of shapes trust and mistrust. And of course, informs what opportunities are available. I think it's important to consider healthcare exclusion today.
Is that something that still shows up that we should be paying attention to?
[Dr Jennifer Taylor-Cousar]
Yeah, absolutely. And I think there's also something that's called transgenerational trauma. So, some of the things that have happened in the past are talked about by grandparents and parents, and then the children start to think, oh, I can't trust the medical system.
So, for example, if you look back in history at, oh, the early 1800s, there was an OBGYN who was performing surgery on enslaved women without their consent and without any anesthesia. And then there was of course the Tuskegee experiment where people were intentionally not treated when they knew that they had a disease. And so, there are reasons that people don't trust and those are pushed forward.
But there are also things that happen even today where, for example, if a doctor is uncomfortable with somebody of another race, they may avoid eye contact and just make them feel less included in the conversation and also make assumptions about why they may or may not be taking their medicines. For example, there are really recent poignant examples. I think with Serena Williams and Beyonce, two people who are very well known and obviously very wealthy, but both of them had major problems with their pregnancies that were ignored.
Mostly I think because of the way people are taught about how people experience pain. For example, there are lots of studies that show that in medical school, even people are taught that black people, for example, experience less pain, which is absolutely not true. But if you're taught that and you start practicing that way, it influences how you take care of people.
[Dr Mike Patrick]
Yeah. Yeah. And I think the mentioning of Beyonce and Serena Williams, for example, is really important because first we do want to shine a light on when these things happen.
We don't want to, you know, brush them under the bed. We want that out there so that we don't repeat those mistakes. At the same time, you know, families hear about this in the news and then make the assumption that perhaps their doctors are also thinking and feeling the way that they, those other folks had experienced.
And so, it is easy then to sort of mistrust a system that perhaps really is a great system in, in your community. So how, how can you sort of tell, am I being treated fairly and equitably versus that I'm not?
[Dr Jennifer Taylor-Cousar]
It's a good question. I mean, I think there are times when people just feel that immediately. There was a survey that was done that was really focused on people who are black, Hispanic, Asian, and they asked them about how they prepare for going to the doctor.
And a lot of them have already experienced being talked down to or ignored. And so, they actually think very carefully about what their appearance is going to look like when they go to the doctor, because they're worried that if they don't look a certain way, that they're not going to get the same level of treatment. I think that if people are able to try to do some research on their own and thinking about the problems and having questions in advance can help, but really, it's not on the person who's going to get care, that should be the one who's responsible for that.
It's really the providers and the ancillary care staff that need to change their behaviors.
[Dr Mike Patrick]
Yeah. Yeah, absolutely. I want to talk a little bit more about cystic fibrosis because you are a pulmonologist and so this is a disease that is squarely in your wheelhouse.
You know, how has cystic fibrosis sort of been wrongly understood as a white disease? Is it because like the, you know, the vast majority of folks with cystic fibrosis are white or, or, or no.
[Dr Jennifer Taylor-Cousar]
I think that plays into it. But if you go back and look at the seminal paper by Dr. Dorothy Anderson, she wrote in 1938 and she was the first one to describe cystic fibrosis as a clinical entity. And in her seminal paper, she actually says that there was a black patient in her case series.
There was a Hispanic patient and there, the geographic distribution of CF was wide. But unfortunately, back in 1938, that was a time when there again, wasn't health equity. And I think that that message was generally just ignored.
And so, it continued to get perpetuated. And it used to be, I would say probably in the last 10 years, it's changed every time you read an article about CF, it would say the most lethal genetic disorder in Caucasians. And so again, that's sealed in everybody's mind that you must be white to have CF, which is completely not true.
We know that we've looked in populations all over the world that occurs everywhere.
[Dr Mike Patrick]
And so that misunderstanding has really led to a lot of, a lot of morbidity and disease and late diagnosis and not getting the treatment that you need. Has that, I mean, have you seen that in your practice?
[Dr Jennifer Taylor-Cousar]
Yes, absolutely. There are so many, unfortunately, examples, but I can specifically remember one person who came to me from Southeast Asia, and he was in his thirties and his lung function, unfortunately, was only in the 30% predicted range. And he had been misdiagnosed his whole life and treated and told he had COPD, even though he hadn't smoked or maybe it was asthma.
And he even got so far as to have to have in vitro fertilization because most males with CF are infertile and they still didn't diagnose him. So, by the time I met him, his lung function was very, very low. And he just had a child.
So, he was worried about dying because he was so sick. So, there was no reason other than the fact that he was Southeast Asian, that his diagnosis should have been missed because he had classic signs and symptoms of CF.
[Dr Mike Patrick]
And do we see that then across the board in terms of BIPOC folks, so Black, Indigenous, and people of color, when they do have CF, is that kind of a universal thing that a lot of them do see higher rates of complications and hospitalizations because of that late diagnosis?
[Dr Jennifer Taylor-Cousar]
Yes, absolutely. There's been numerous papers. Dr. McGarry is one of the doctors who's done a lot of work on this and she's shown multiple times that there's increased rates of Pseudomonas, for example, at younger age in Hispanic children. Weights are lower. We actually know that newborn screen misses, especially in certain states misses people with CF who are of color because their variants are often not the ones that have been studied. So, if you get late diagnosed and you're going to grow less well, and we've definitely, definitely seen that.
We've also seen exclusion from lung transplant lists and increased mortality. So, people dying while they wait or never get listed at all. So, there are a lot of, unfortunately, horrible health impacts for people of color.
[Dr Mike Patrick]
Yeah. And so even when we hear, oh, well, the newborn screening was negative that we still have to keep cystic fibrosis in our mind as a possible diagnosis, regardless, obviously of a person's skin color, but also, we can't say a negative newborn screen means that it's not possible.
[Dr Jennifer Taylor-Cousar]
Exactly. It's just a screening test. It's not a diagnostic test.
[Dr Mike Patrick]
So, then you mentioned some of the reasons why the myth has propagated. Are there other things that we can do then to improve equity and outcomes? I mean, one obviously is awareness and learning, hey, this is not just a white person's disease.
It can, it can impact anyone, but what are some other things that we can take as providers, as families, as communities really to improve equity and outcomes, not just even with cystic fibrosis, but just in general?
[Dr Jennifer Taylor-Cousar]
I think one of the things that we can do again, besides awareness is just evaluate our own behavior and biases and pay attention to them. We're people. And so, we're always going to have some kind of biases, but try to keep those in check and be aware of them so that you are not letting them obscure your treatment and diagnosis.
I think there's also advocacy. So, for example, with CF newborn screening, the CF foundation and people within the foundation who are associated with that have worked really, really hard to try to change the way newborn screening is done so that it's more inclusive. So right now, it's there in 50 States.
So, everybody does newborn screening for CF, but it probably is done in like 40 different ways. And so, there are some places where it's done really well, and most people are being picked up at other places where there's still a lot of work to do. So, advocacy I think is really important and being really intentional.
So, one of the best examples I think of exclusion is these new great drugs that we have in CF called CFTR modulators. But because the variants or mutations that people with CF of color have weren't studied, they were mostly excluded people of color from these trials, which meant they didn't get access early like the people in the trials did. And not only that, but then once the drugs were approved, they weren't approved for their specific mutations.
So, another example of intentional behavior is that the CF foundation lab went in and started testing some of the mutations in cells to see which ones would be responsive. And when they did that, it not only improved the number of people who were eligible who are black and Hispanic, but it also improved the number who are white. So, it lifted up the entire boat when people were really intentional about their behavior and in the neuroscience.
[Dr Mike Patrick]
Yeah. Yeah. And so it is important to really have a diverse population when you're conducting clinical research so that you really do see everyone and not because, you know, you could say, well, if race is not biological, then it shouldn't really matter, but it doesn't matter necessarily for there being different illnesses, but those illnesses can show up a little bit differently in depending on your biology.
Would you agree with that?
[Dr Jennifer Taylor-Cousar]
Yes, I absolutely agree. And also, you know, again, there are people who live out quite rural and don't have access to care. And so, for example, you have to get your liver function tested every three months and then back now with the new drugs every month for a little while.
So, you have to think about those people that are in the trial. That's easy for them to do because they're in a clinical trial, but how is that going to impact people who are out in far reaches of Colorado? You can drive eight hours and still be in Colorado.
So, it's important to have all of those people in trials so that you can figure out what the safety issues are, for example, as well as the efficacy for everybody and not just a subset of people.
[Dr Mike Patrick]
Yeah. Yeah, absolutely. That also then I think makes it important that in local communities, especially the farther you are from a big metro center, like you almost need a grassroots effort to sort of make sure like to be advocates of health equity.
What are, what are some things that folks can do, even if you're not, you know, medically trained, we still just need voices in the community. And that's one of the reasons that we're talking about this on our parent podcast, because you may be that voice of enlightenment and reason for your particular community. Like what are some things that folks can do to advance health equity and at the local level?
[Dr Jennifer Taylor-Cousar]
I think actually going in. So, for example, if things aren't happening the way you would like for them to be in your schools in terms of the health care that's happening in schools by the health nurses, you should be going to those board meetings and speaking up and getting your friends to go with you. I think it's also really important that people pay attention to the laws that are changing and how they're going to impact their health.
And so, you need to understand those proposed changes and then vote for the ones that are in the interest of the health of the people in your community.
[Dr Mike Patrick]
Yeah. Yeah. So important and to be informed and to use your vote as a voice in an election season, that's really, really important.
Do you find that research efforts are making changes and including more people is, you know, are things going in the right direction there? I do feel like a lot of research studies these days require approval by institutional review boards. And there are often policies in place to make sure that there is diversity in the studied population.
Like, are we, are we making a difference? Are we, are we making headway compared to the past?
[Dr Jennifer Taylor-Cousar]
I think that in certain instances, when people are very intentional, we are making differences. So, it also applies to basic science as an example, I gave you with the CF lab, actually specifically testing variants that are known to occur in people of color. But also, there's a study right now happening in CF called REACH where every single person who is eligible is asked regardless of what their history is, because it's often easy to ask people that you know really well or that you're comfortable with.
But if you use that method of asking everybody, you find that you get more people into the trial who have a more diverse background. So, I think that is happening more because I think people are more conscientious about it. So, it doesn't mean we can stop thinking about it because we have to continue to push ourselves.
[Dr Mike Patrick]
Yeah. Yeah, absolutely. And then as we think about health equity, do we have reasons to be hopeful about the future?
I mean, I think just the fact that we are talking about this and, you know, raising awareness and doing what we can to shine a light when and where disparity exists. So, you know, is there hope?
[Dr Jennifer Taylor-Cousar]
I think there is hope. I mean, we have that example of that great drug now being approved for more people. I also think that we have seen concrete changes like in newborn screening.
So, I think that you can see the results of concentrated, really intentional behavior. And so, if we continue to do that, we can continue to make more and more improvements.
[Dr Mike Patrick]
But it's going to take everybody chipping in and understanding that not everyone has the same access to healthcare. And it really is something that when we lift up our communities and we increase health literacy and we, you know, improve health outcomes, it really benefits all of us, you know, both at the local level and at the state and national level as well.
[Dr Jennifer Taylor-Cousar]
Yeah. Healthcare is incredibly expensive, but it's even more expensive if you wait to treat somebody until they're really, really sick. So, the more that we can help prevent people from becoming very ill by our healthcare policies, the better we offer as a society we are really.
[Dr Mike Patrick]
Yeah. Yeah, absolutely. Well, again, an important conversation and we are going to have a lot of links in the show notes for folks.
So, if you want to sort of self-study on this and dive a little bit deeper, you know, please do just head over to the show notes over at pdacast.org. This is episode 589 and we have lots of stuff there. Just some examples, a social determinants of health from the centers for disease control and prevention.
We do have a great piece on just exactly what are social determinants of health. We have a race healthcare and health disparities, a critical review and recommendations for advancing health equity from the Western journal of emergency medicine. That's actually a really interesting article.
And so, for the providers and scientists out there, this would be a really good one to learn more about the effect and impact the health disparities have on everyone. The American public health association. There's an article regarding social justice and health.
So just lots of things. Please do head over to the show notes for this episode again, 589 over at pdacast.org you'll find all of them right there. So once again, Dr. Jennifer Taylor-Cousar adult and pediatric pulmonologist at national Jewish health. Thank you so much for stopping by and visiting us today.
[Dr Jennifer Taylor-Cousar]
You're so welcome. Have a great day. And thanks for having me again.
[Music]
[Dr Mike Patrick]
We are back with just enough time to say thanks once again, to all of you for taking time out of your day to make PediaCast a part of it. Really do appreciate that. Also, thanks again to our guest this week, Dr. Jennifer Taylor-Cousar adult and pediatric pulmonologist at National Jewish Health and the University of Colorado Anschutz School of Medicine. Don't forget you can find PDA cast wherever podcasts are found. According to the Apple podcast app, Spotify, iTunes, and Google play. I heart radio, Amazon music, audible, YouTube, and most other podcast apps for iOS and Android.
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And the third podcast that I host that you may want to check out is called a FAMEcast. It's a faculty development podcast from the Center for Faculty Advancement, Mentoring, and Engagement at The Ohio State University College of Medicine. So, if you're a teacher in academic medicine or a faculty member in any of the health sciences, then this is a podcast for you, and you can find FAMEcast at FAMEcast.org and wherever podcasts are found by searching for FAMEcast. Thanks again for stopping by. And until next time, this is Dr. Mike saying, stay safe, stay healthy, and stay involved with your kids. So long, everybody.
[Music]
