Podcast 2 health equity

The podcast discusses disparities in healthcare, focusing on the lack of racial diversity in the medical field and research. It highlights the importance of representation and the impact it has on patient outcomes. Examples are given, such as the underrepresentation of black med school students and the inaccurate pulse oximeter readings for patients of color. The podcast also addresses the mistrust in vaccines due to historical medical racism, emphasizing the need for equal representation in clinical trials. The episode concludes by highlighting the work of Arnelle Etienne, who created a solution for more accurate brain function testing for people with different hairstyles. Despite the challenges faced, the podcast encourages listeners to believe in themselves and make positive changes in healthcare disparities. Hello, my name is Ashlyn Knight. And I'm Melissa Stigleman. And today we're going to begin talking to you about disparities in health care. Now we're really excited to talk to you guys about this topic. It is very near and dear to both me and Ashlyn, but first we think it's extremely important to acknowledge the native land we are currently recording this podcast on. We are currently on the Lenni-Lenape land. So we're also going to take some time to just acknowledge some privileges that me and Ashlyn have, because we understand that, you know, I am a Hispanic woman, but my experience as a white-passing Hispanic woman is going to be very different to someone who is not white-passing. As a multiracial black person, I am lucky enough to be mostly white-passing, I'm more confused as a Hispanic than anything, whereas my darker siblings, my darker cousins, they are more likely to be racially discriminated against. And, you know, of course we both speak English, which is something that I think a lot of Americans don't really think about as such a privilege. Take for granted, really. Definitely take for granted. I mean, I have cousins who are currently, you know, in school studying English who really just want to learn for the opportunities that come with being able to speak English. So in this podcast, we're going to be, when we're discussing disparities in healthcare, it's kind of a deep dive into the multifaceted aspects of disparities, in which it covers racism, it covers sexism, it covers a lot of aspects, including aspects we don't really cover like autism, or ableism, where people who are more disabled have a difficulty in accessing healthcare. I mean, there's also, you know, ageism, just not being, when you're a younger woman, for example. I mean, I have a friend who was misdiagnosed with cancer because they just assumed that she was dehydrated. Or when you're older, where you're not listened to as well because you're just getting old. There are a lot of isms that make up the systemic issues that impact the American healthcare system. And today we want to shine a light on a field that while also just pointing out that we feel that the lack of racial diversity in healthcare, in research, in all of those related fields. In STEM in general. In STEM in general. I mean, if we're able to increase the amount of doctors who are of Hispanic or Black origin, Native American, Pacific Islander, multiracial groups, if we're able to increase representation for those groups, I mean, it's been proven in the past that there are better outcomes for patients of color when they have doctors who look like them, who sound like them, who are willing to communicate with them. So when we look at the current number, the current percentage of the amount of Black med school students, we're at a rate of 6.2. Now that is half of the amount of Black people who make up the entire U.S. population. So it's underrepresentation there. Extreme underrepresentation. And you can see it in situations like Serena Williams or Beyonce. Now these Black women are famous, right? Everybody knows Beyonce. Everybody knows Serena Williams. They're also rich. You know, they have large amounts of money. But yet when they were giving birth, when they were having children, they were both put in situations by their doctors that led to them both almost dying. And in the case of Serena Williams, it wasn't until her white husband grabbed a doctor and said, something is wrong with my wife, that anything got done. And that's just another case of the fact that for Black women alone, out of 100,000 live births annually, Black women, non-Hispanic Black women, are more likely at a rate of 55 deaths per 100,000 babies born. And that's not even talking about the deaths of the mothers. And it's due to a lack of care. It is. It's due to a lack of care. And, you know, I don't want to go in and blame every doctor, because I know it's not every doctor, but... It's a systemic issue. It is a systemic issue. And systemic issues are very complex, and really finding the root of these problems is difficult. Now in the case of a Black woman in childbirth with huge death rates for both the mother and the baby, that could potentially be related to the Apgar test. Really? Why? Right. So it's not necessarily racism here. In this case, the Apgar test is a score given to babies that have been born based on different metrics. Now, the Apgar score is basically the percentage of likelihood of viability, right? So one portion of the Apgar test is the color of the baby. Now, if a baby is born and its skin tone is pink, that's one way to pass the Apgar test. But if you're not white... Then you're not pink. Black babies are not pink. So it's really difficult for a doctor to look at a Black baby when they've been taught, okay, this baby needs to be pink. If it's not really pink, I mean, it's difficult to tell if this baby is breathing or not breathing. So it's something ingrained to the structure of how we teach medicine. Yes. So we need to remake the Apgar test or maybe make an Apgar test specific to babies of color, right? Maybe we could use a different skin color metric to identify the likelihood that this baby will respirate on its own. But until we fix that systemic issue, white doctors might not realize that this is even a problem. And that's why, on average, when there is a Black doctor present, the mother and the baby are more likely to survive, maybe because they have experienced difficulties with the Apgar test. Maybe they're just more predisposed to noticing these things. They're aware. They're aware of these cultural issues that occur. So it's really important that we recognize this in medicine, but also in research. Indeed. Because there are definitely times where, because of lack of representation in these research trials, we are seeing not enough data about how different drugs, how different medical treatments, how different medical devices act on people of different races and different ethnicities. It's a self-fulfilling prophecy where it starts at the very beginning. In those trials, before it leads off into medicine itself. And it's similar to medical racism in which it's not like verbal racism, but it's something ingrained to the system where people of color and minorities are more likely to face larger health disparities compared to their white counterparts, because white is considered the norm. So a lot of trials, especially in the past, were based on white people, white males in particular. Yes. So in recent years, white women have been considered more. But that's a different issue. That's a completely different issue. I mean, now we're talking about the gender disparities that exist, which are definitely very prevalent. In the previous podcast, I briefly touched upon how, because women were not involved in the original statin drug trials to decrease cholesterol, now we're seeing data that, yes, the cholesterol is decreased, but now triglycerides are increased. If that data was present while they were conducting the first trial, we could have had X amount of time to develop a treatment for women. And a part of that is because it was generally considered that women are more complex. We have periods, we have pregnancies, where that affects the data compared to males more. It's not a simplistic system, but it's easier to account for the disparities between participants who are male than participants who are women, where 1,000 other effects may alter the studies or the results. So it's a lot easier to fix something that's simpler than something that is a complex problem. Yeah. And I mean, let's think about it. You know, realistically, some drug companies want to make money. So by not including these groups and only including a majority white males, you know, you could streamline. It's a faster process. It is a faster process because you're not dealing with the complexities of actually including the entire American population. That's a problem. Now I think recently, a lot of us have heard about the absolute failure that was the pulse oximeter. Yes. Very unfortunate. During, a little bit after the COVID-19 pandemic, we discovered that because the pulse oximeter, an important device used to measure blood oxygen levels, it was not accurately measuring patients of color's blood oxygen levels. And more often than not, it was recording a higher oxygen level than was actually present in the patients of color's blood. It was found out that the pulse oximeter was only tested for white men. So then during the COVID-19 pandemic, when blood oxygen level became a very important discussion needed for doctors to evaluate who was a severe COVID case, who isn't, patients who had more melanin in their skin, patients of color, ended up having poor outcomes overall because their issues were not being addressed. Now in that case, it might have not been directly due to the doctor, but knowing now that it is inaccurate among darker patients, now doctors should be aware, we cannot trust this 100%. It needs to be addressed and it needs to be resolved because the amount of people who have melanin in this country, that shouldn't have been a problem in the first place. It should have been tested with a demographic that more matched the American population, but it wasn't, which is very unfortunate. There are a bunch of other examples also about lack of representation in research trials throughout history and even today. And me and Ashlyn believe that those lack of inclusivity and lack of representation during the COVID-19 trials affected the trust that the general public had towards getting those vaccines. So one of the factors in determining whether a vaccine will be efficient or not is, yes, of course, making sure it's safe for the person, making sure that actually works. But an unsaid portion is the public's trust, because you can't give a vaccine that no one's going to use. And so making sure that you have a high public trust in the public's perception of how safe the vaccine is, that determines how effective it's going to be and how many people are going to be taking it. Now, one of the issues was you had a good portion of, I know personally in the black community or the Hispanic community, and where people were deeply mistrustful of this vaccine. And my stepsister refused to take the vaccine until she saw proof, like later on, like years after, that it was safe to take, because she didn't want to harm herself. And there's a lot of, this is a complex issue, because it's not just, it's not down to ignorance. They have a right to be distrustful. One of the main reasons is that you see the Tuskegee syphilis experiment, where they've lied to for 40 years, resulting in deaths of over 100 black men, simply for medicine, simply for the science, and that their partners were not told they had syphilis. They were lied to. And it wasn't even, they didn't come out on their own, it was leaked. And so this is a deep betrayal, and it has time and time again shown that we cannot trust the government, we cannot trust the health system to take care of us, we must take care of ourselves. And that's why you have more reliance on more holistic medicines, where it's like, like witch doctor treatments, where it's backyard shamans, like, you trust your community more than you trust the government. And it's not, they're not ignorant, they have a right to be distrustful, so it's up to us to bridge that gap, to assure them that it's alright. And a part that you can do that is having equal representation in the clinical trials for these vaccines. However, according to a study called Racial and Ethnic Diversity in SARS-CoV-2, the COVID vaccine, clinical trials within the United States, Pfizer, for children first, out of two, over 2,000 participants, 86% of them were white, which already is over-representative compared to 5% of black people, 2% of most are racial, which is an alarming issue considering that over 10%, as of the 2020 census, are multiracial, and this, only 11% were Hispanic, with less than 1% being Asian, which is also a bigger travesty. Now as for adults, both Pfizer and Moderna had the same issue with over-representation for white people, where for the Pfizer, out of 105 individuals, 3% were black, 3% were Hispanic, with Native Americans and Pacific Islanders, multiracial, 0%. They were not represented in these categories. And that's disgusting, that's appalling, because these are people in America, these are over, we have over 100,000 people who recognize as Pacific Islander, Native American, multiracial, and they're not being represented accurately in some cases, they're not even being included in these trials. You could say it's a number game, where it's like, oh, Pfizer only had a small number of participants, but Moderna had over 30,000 participants for their adult, for the adult clinical trial, again, 79% were white. You had a high percentage of Hispanic, with over 21 being represented, but again, lower percentages for black, Asian, multiracial, and then less than 1% for Native Americans and Pacific Islanders. This is a disgusting under-representation, and how are you supposed to trust in a vaccine that hasn't even been tested on people like you? And that's so unfortunate, because me, myself, when the COVID-19 vaccine first came out, I was advocating for the vaccine. I felt that it was very important for me to take time out of my day to speak to anyone, my friends, my family, their parents, their friends, their neighbors, I didn't care. I was taking so much time to just talk to them about the vaccine, but a common issue kept coming up. The Tassiki experiment was brought up multiple times, but also just the general distrust in the government, and I think that genuinely stems from not seeing enough representation across the medical field, across the research field, because I think in their minds, when they were thinking about research, they were thinking about white men in white coats, and they weren't thinking about people like me or people like Ashlyn. But it seems like when we actually look at the vaccine trials, there might have not been people like me or people like Ashlyn present during these trials. It's easy to dismiss them as ignorant, as they don't know what's best for them. However, by dismissing their concerns, we are again perpetuating that problem where people's voices that matter most right now aren't being listened to. Again, they're being silenced. It's a very unfortunate issue, and I really think, again, the only way that we're going to get around this is by increasing representation, increasing the amount of people of color who are pursuing medicine, who are pursuing research. Calling out trials that don't have the proper representation, calling out medicine that hasn't been treated across multiple populations, it needs to be addressed, it needs to be called out if we're going to try to start increasing that public trust. And you know who has to call that out? Us. People like us. If you're going into medicine, if you're going into medical research, if you're going into academia in general, you have to be a part of the solution. And you know, I know that this conversation hasn't been the most cheerful. Quite depressing. Quite depressing. But even among all of these disparities, all of these inequities in healthcare, we have brilliant, young scientists creating solutions. We have Arnelle Etienne. I'm not sure if I'm saying her name properly. It's Arnelle E-T-I-E-N-N-E. She is a young scholar who goes to Carnegie Mellon University, and she is really changing people's lives. So one of the things that she did is, so when you're trying to test your brain function, when you're trying to test your brain electrical waves, one of the things is using an EEG. And so they put electrical nodes on your hair. And personally, I had to do this as part of my own testing, and it was really uncomfortable. My hair was up that day, so it's large. It has volume. It's curly. And so I remember the doctor struggling for five minutes trying to get it to sit right so that I can have an accurate scan. And that is appalling. I did not feel bad about not having my hair up that day. And again, that's my own experience. I don't know how many people who have black women have that own experience on their own. And so Arnelle Etienne, she made a way, an accommodation for these different hairstyles, for cornrows, for braids, where they can be directly placed onto the scalp to ensure a more tighter fit, a more accurate read. And that's really important because, you know, you're already feeling embarrassed. You're already feeling embarrassed. You're already feeling ashamed. Imagine having to go back again because your initial results failed. That's affecting your health. Etienne really is doing something that will help future generations and will help patients of color feel comfortable and feel confident in their treatment and in their level of care. And that's not to say that she had it easy. She was, like, just brilliant and just happened upon it. She struggled through college. She was a nontraditional student. She had ADHD. She didn't know she had ADHD. She was later diagnosed. But she had to fight for herself. Her college experience was much harder than some of her other peers. And one of the things that she mentioned is that academia in general has structural issues that need to be addressed in terms of accessibility. As a black woman, she's faced, I don't know how to count, like, discriminatory experiences just feeling like she's less than because of her, because of ADHD, because of her being black, because of being a woman in general. Yeah. Yeah, I mean, in our previous podcast, we discussed the moments in our lives where we need to feel less than as well. And, you know, this is a problem that's likely going to continue, unfortunately. But you have to really just remember that even if other people are making you feel less than, be like Arnelle. Be like her. Do something for your community. Forget all the other people who told you that you cannot succeed, that you cannot be the future of research. Because Arnelle laughed in their faces and created something incredible that will only help patients. For every person that's going to laugh at you, you'll have someone that you can, who will, what is it, rally behind you, who can be that support, who believes in you. And it's just about pushing through. It's about finding those people who believe in you. Because you have your family, you have your friends. And even if you don't have that, you have to believe in yourself ultimately. Yeah. And, you know, there are a lot of support systems that you can find throughout your university. I mean, again, here at Montclair State, we are very lucky to have programs like LSAMP, to have programs like AWIS, Association for Women in STEM. Because with those communities, you can find support, you can find research opportunities, and you can find people who believe in you. So you can go on and make life-changing innovations for patients of color across the country and across the world. So please, believe in yourself because we believe in you. So while most of the topics were quite depressing or just dismal, in the next podcast, we're going to be talking about ways to accommodate this and to fight back against these disparities in healthcare. Because it's so important. I mean, as we grow up, as we complete our undergraduate, and if we choose to go into our various, you know, medical school or graduate degrees or PhDs, we have to remember these disparities. Remember that they exist and look out for them. Because, again, you might be in a position where you could do research or you can create some sort of systemic change to help people who look like you, who come from similar backgrounds as you. Because if you don't help them, who will?