Arya Singh: Beyond Accessibility

Transcript

Harlan Krumholz: Welcome to Health & Veritas. I’m Harlan Krumholz.

Howard Forman: And I’m Howie Forman. We’re physicians and professors at Yale University, and we’re trying to get closer to the truth about health and healthcare. Our guest today is Arya Singh, but first we always check in hot topics or current topics in health and healthcare. What do you got, Harlan?

Harlan Krumholz: I got a quiz for you today, Howie.

Howard Forman: Uh-oh.

Harlan Krumholz: I got a quiz for you.

Howard Forman: Uh-oh.

Harlan Krumholz: I was telling you that I was going to talk about how the GLP-1s are going generic in many countries, but not our country, but I saw something else I thought might be more fun to do.

Howard Forman: Do it.

Harlan Krumholz: Maybe we’ll get back to that at some time. So look, in just the last few months, we’ve seen a wave of AI health tools, and we’ve talked about a lot of them on this show. ChatGPT launching a health product, Anthropic rolling out Claude for healthcare, platforms like Perplexity Health, which just came out this week. All of them talking about connecting your medical records, your wearables, your lab results, trying to give you personalized answers.

And then we’ve seen companies like Doctronics, they just announced they’ve raised $40 million. Lotus Health, they raised $30 million, all trying to do what they call an “AI doctor.” And so this isn’t theoretical anymore, and we’ve been talking about it. But a new national poll came out from Kaiser Family Foundation that was asking some key questions. And I just wanted to get your view on this. So—

Howard Forman: Sure.

Harlan Krumholz: This poll asked, how many Americans are actually using AI for health information? What percentage do you think of American—

Howard Forman: I think I saw the headline on it and that it’s one in three, and that sounded very low to me.

Harlan Krumholz: Oh, really?

Howard Forman: I thought it would be higher.

Harlan Krumholz: So for me, I thought that was amazing early adoption. I mean, I guess if you think about almost everyone’s used Google to search for health information, but actually using AI for health information. Because I know a lot of people still that aren’t using these LLMs, like ChatGPT or—

Howard Forman: I mean, for me, I think I use them every day for my own personal complaints.

Harlan Krumholz: Well, yeah. So there’s a great divide in our country. Digital divide.

Howard Forman: Yes.

Harlan Krumholz: So I think that you look at why, about two thirds of those who are using it, it’s just speed. They want quick, immediate answers. They don’t want to kind of navigate a whole bunch of other stuff, whether it’s search or go to their doctors and so forth.

And I think it’s really interesting because I think this is a shift in behavior, not just technology that people are now comfortable, not just kind of saying, “Give me a bunch of links” but actually “Give me a bunch of answers.” And what’s interesting to me in this poll, well, I’ll ask you, what percent say they’re using AI because they can’t afford care or they can’t get access to a clinician? Do you remember that answer?

Howard Forman: I think I saw that it’s higher, that it’s more likely. Is that right?

Harlan Krumholz: So this was about 20%. Twenty. So it’s one in three—

Howard Forman: Oh, okay.

Harlan Krumholz: ... are using AI, and 20% of those people are saying, “I’m doing it because I can’t afford to go see a doctor.”

Howard Forman: I see. I see.

Harlan Krumholz: “I don’t have access.” So in this way, I think it’s really interesting because you can raise the question, is AI becoming a substitute for the healthcare system itself? Is this how... people are workarounds? Especially for younger and lower-income people, does this tell us where the system’s failing, or does it tell us what the future of healthcare is going to be like as AI may become the front door when the real front door is hard to open? So I just got a couple more, then we’ll get to our interview.

Howard Forman: Go ahead. Yeah.

Harlan Krumholz: It’s going to be amazing today.

Howard Forman: Yeah.

Harlan Krumholz: So what about safety and follow-up? It turns out that many people who are using this for health information aren’t following up with a doctor afterwards. I thought that was really interesting too. So in other words, this is the one-stop shop for them. They’ve got a question.

Howard Forman: Substitute.

Harlan Krumholz: They’re getting the answer, and then they’re acting on it. And I think there are already some studies suggesting these tools don’t always get this right, especially in more complex situations. So it could on one hand reduce unnecessary visits. On the other hand, it could be falsely reassuring people.

Howard Forman: Yeah.

Harlan Krumholz: And then just to sort of close this up, what percent of people who use these tools say they’ve uploaded personal health information, including something about themselves—lab results, doctors notes, or something?

Howard Forman: Oh, probably a lot. Probably a lot.

Harlan Krumholz: A lot. Almost half. Almost half have done that. And yet most of them say they’re worried about privacy, but their actions... on one hand, they’re worried, but it’s not stopping them from saying, “For this to be useful, I’ve got to upload my stuff.” And so in a way, they’re trading off some of the concerns about privacy for their feeling that they need this information. So I guess what struck me most about this isn’t the rise of AI, and in some ways, I guess, like you, I live in an ecosystem where one in three sounds low because it seems like almost everyone I know has used it for health information. But it is telling us broadly across the country that it’s moving, it’s moving. And it also is revealing how people are navigating their health. They want speed; they want privacy. And in many cases, what they really want is 24/7 rapid access to answers.

And they don’t seem to be getting that from the system. And yet all these new entities or products of more establishment—of course in AI, there are not many that are fully established for very long—are rising up to do it. So it’s going to be a big question how this is all going to shake out. But if you’re a legacy organization, a hospital healthcare system, and you’re not paying attention to this, you’re at risk.

Howard Forman: I couldn’t agree more.

Harlan Krumholz: The world’s changing right in front of you. And—

Howard Forman: Very fast.

Harlan Krumholz: ...the question is, how are you going to keep up?

Howard Forman: Very, very fast. I totally agree.

Harlan Krumholz: Yep. All right. Hey, let’s get to our guest, your student. This is going to be an amazing interview, I know.

Howard Forman: Arya Singh is a rare disease policy advocate and a current PhD candidate in population health sciences at Weill Cornell Medicine. At 18 months of age, Arya was diagnosed with spinal muscular atrophy or SMA, a rare genetic neuromuscular disease that was once the leading genetic cause of infant mortality, and she became one of the earliest patients in the world to receive a novel SMA therapy through a clinical trial she joined when she was only 10 years old—six years before the FDA approved it.

Her research now focuses on quality of life for children with rare diseases and chronic illnesses. Arya graduated summa cum laude from Yale with a BA in the history of science, medicine, and public health before receiving her M.P.H. through the joint BA/MPH program. At Yale, she was awarded the prestigious James Andrew Hoss Prize, which is given annually to the senior whose intellectual achievement, strength of character, and fundamental humanity has most inspired their fellow students.

I got to know Arya first as a student, then as my course assistant, and then as a teaching fellow. We talked about Arya back in May of 2022 when she graduated Yale College, and we featured her in episode 35. A hundred and eighty episodes later, she joins us for this podcast interview. It is an absolute pleasure to have you here, Arya. You and I do remain in close touch, so I feel like you’re practically a member of my family, and we’re just honored to have you. I want to start off for you to give at least a little of the context of what it was like for your parents to first discover that you had a genetic problem that was going to prevent you from advancing along the normal milestones that parents come to expect.

Arya Singh: Yeah. Well, thank you for the introduction and for having me. I’m very excited to be here. Feels like a full-circle moment. But yeah, I think in terms of kind of the parent perspective, so like you said, I was 18 months when I was diagnosed and the gene that caused SMA and the mutation was actually only discovered five years before I was born, in 1995, which ended up being a pretty lucky timeline for me and for drug development. But yeah, I was 18 months old, and we were actually at a holiday party for a friend of my parents, and a pediatrician was at the party and saw me stumbling and just very obviously not hitting motor neuron milestones that I should be.

And so she rushed over to my parents and said, “You need to take her to the doctor right away!” Up until then, my parents were not worried. I was their first kid. They were learning as they went. They thought I was maybe slowly developing, but SMA or spinal muscular atrophy doesn’t affect anything cognitively. So I was developing mentally appropriately. And so they took me to a bunch of specialists, all of whom kind of threw out SMA as a very last resort, but would push in it with like, “Oh, it could be this, but it’s probably not. We really hope it’s not.”

But also, at the time, there was very little known about spinal muscular atrophy. There were zero safe and effective drugs for it, and there was some thought in the community that it primarily affected boys. So with all of that, there was really low suspicion that I had it. And then a few days after 9/11, and just a few days before my brother was born, my mom got the call that I had SMA, and they were shattered because at the time, yeah, it was fatal.

It was the number one genetic killer in infants, and there was no cure and there was no treatment. And so within the scientific community, it was very much met with, “We’re really sorry for your loss, and there’s nothing we can do.” And yeah, my parents had no medical background whatsoever. They had finance and education backgrounds. And so I think, to kind of have to learn about all of it and jump into that world very quickly was incredibly overwhelming for them. And doing that with a baby days away from being born and worrying if my brother Kieran would have it too was terrifying. So yeah.

Howard Forman: And just as one quick follow-up before I give it to Harlan, when did you first realize that you were different?

Arya Singh: Yeah, it was funny because my parents worked so hard to make sure that I didn’t feel that for as long as possible. They would go into elementary schools, and really maybe until middle school, and kind of give a Q&A to the class and try to get them to ask all their questions and answer all their questions before then, would send home a flyer to their parents so that their parents would have that conversation with them. And it honestly worked pretty well for when I was younger. I think that did do a lot of the heavy lifting. I never knew that was happening, but SMA is progressive.

And so I first used a walker, and then I transitioned to using a wheelchair, but I, in all of the academic experiences I’ve ever been in, have been the only person with a mobility issue and certainly in a wheelchair who used a walker. So I think even when I was four years old, I understood that I was different, but there wasn’t really a recognition yet of why. And I remember I used to do aquatherapy every day. And when I was like six, I came home one day and I was super upset because I had heard someone throw out the word SMA before, but I didn’t remember which order the initials went into.

And I freaked out to my mom, because I was like, “I think I have this thing, but I don’t know what order the words go into and I don’t know anything about it. You have to tell me, you have to tell me!” And so I remember that we were sitting at the dining room table and my dad was still at work and she called my dad and was like, “All right, it’s time to have the conversation. You have to come home.” And so I would say I was about six when I finally clued into why I was using a walker. And at that point I had literally just transitioned into using a wheelchair. So I think that timing was probably related as well.

Harlan Krumholz: Arya, it’s such a privilege to meet you. Howie’s told me so much about you and now I’ve had a chance to read a lot of what you’ve written and spoken about, watch your Class Day speech. It’s really something, what you’ve been through. It really spans the entire arc of modern medicine. You’re born; like you said, the disease is really just being defined. I mean, the defect in the genetics and how you are living with it and then to become one of the earliest people in the world to receive treatment through a clinical trial.

And then at the same time, it’s like such a personal story about family, identity, what it means to grow up in all this. It’s just incredible. One of the things that struck me was something you’ve emphasized, which is how your parents shaped how you saw yourself. So I think it’s, I mean, they must be extraordinary people, but you’ve said they emphasized that you were limitless and that anything you dreamed of doing you could do. Tell us something about them. I mean, how were they able to actualize that? How were you able to internalize it? Give us some insight into that.

Arya Singh: Yeah. I mean, I think it’s one of those things that as you get older, you appreciate your parents more, and that is certainly the case. I think they know this, but growing up, I was mad at them often for putting me in these clinical trials and making me do physical therapy and sheltering me from a lot of what SMA was. I felt like it wasn’t fair. But now having grown up and also being now in the world of public health and medicine, I am so grateful to them. I don’t know how they did it. I would love to know too, but I hope to be a fraction of the parent they are one day because I think every parent wants to save their child and give their child the best possible life they can.

And I think my parents, I’m biased, but I think my parents embody that more than anyone I could think of. I think being able to turn a fatal disease into a chronic disease in 25 years is pretty impressive by any means. But I think the fact that they had no scientific background whatsoever and learned everything they could possibly learn about SMA and really transformed their entire careers. My mom’s still the president of the foundation and my dad’s hedge fund funds it, but they did that all literally overnight because they had to.

And it was very, very clear from the limited information there was about SMA, that it was a race against the clock. And so I can’t even think about the pressure that they felt, but they did a phenomenal job at hiding that for me. And I think actually relating a little bit to what Howie said earlier about how my parents felt, I thought I often shared this clip because I think it really sums up what they experienced, but then I didn’t know about this until 20 years later. But they did right when the SMA Foundation was started in ’03, they did an interview with ABC News and my mom had said that, “We don’t go to movies anymore,” talking about My Big Fat Greek Wedding, which had just come out.

“It’s so funny because it used to be a great escape. And I would love to go to these romance movies or action flicks or whatever. And I’ve decided that it’s a bad thing for me to do because every time I go to a movie, I walk out sobbing, no matter what the movie’s about. And part of that’s because you sit in this quiet space and you have time to think. And ultimately your mind just keeps wandering to everything you lose. And the smallest thing on the screen dream prompts you to watching somebody in My Big Fat Greek Wedding. While everyone else was laughing, I was crying, because it reminds you that your daughter probably won’t have the luxury of going through a stressful wedding scenario.” And then my dad followed up with, “She’s an incredibly special girl. And she’s a happy girl. And she has a wonderful life ahead of her. Even if she can’t walk down the aisle herself, maybe there’s still so much of life that’s left for her, but every day and every month that goes by, she loses more she won’t get back and it’s going to make that life what remains for her that much more difficult. And that’s why the clock is ticking, because every day there’s another dream that gets lost, and I don’t care what condition our daughter’s in, we want her around. But there’s no doubt that if she can stand and have a great active life in some way, too, that would be so much better.” And I don’t know. I always think that’s an incredibly powerful kind of summary of how they felt in that moment, but I never once knew that that was how they felt. I thought that I did have an active life. I thought that I did have a limitless life—and I did.

They instilled in me that very early on that my brain was my power and that I could make a difference in the world through my education and through being an empathetic, good person. And so I took that to heart. And so I think really it was through school from a young age that made me feel like I was limitless and through the incessant kind of effort they put into making sure that I had normal peer relationships and normal relationships with my siblings and normal experiences. We had this very pivotal phrase in our family called “pre-tripping.”

And my mom would literally go “pre-trip” any playdate that I wanted to go to or any field trip that I had to make sure I could go, and she would change it if I couldn’t. And so yeah, I think that that quote kind of sums up how they felt behind the scenes. But to me, I was told and I was shown that I could do anything I wanted and that if I couldn’t, they’d make it work somehow. And I’m very grateful that they did because I really, I think, I mean, I still believe that to some extent. And having grown up with a lot of other people with SMA, they didn’t get the luxury of having that experience. And so I owe that all to my parents for sure.

Howard Forman: And just briefly to point out, when you said “pre-tripping,” you mean your parents actually scoped out—

Arya Singh: Yes.

Howard Forman: ...what the field trip was going to be like?

Arya Singh: Yes.

Howard Forman: And just to point out for our listeners, you didn’t have a “Big Fat Greek Wedding,” but you did have a great wedding in Bar Harbor, Maine, a few years ago. You’re married, and so you are living that dream that your mother wanted for you, that your father wanted for you. You have given back in many, many ways. Obviously your parents are involved in the foundation in other ways, but you personally have given back many ways.

You wrote a children’s book about four or five years ago about clinical trials, which I thought was awesome because there are a lot of children that are involved in clinical trials, and it made it accessible to them. Can you talk a little about what motivated you to do that and other ways in which you’re trying to get out in front and help people better understand rare diseases and SMA in particular?

Arya Singh: Yeah. I think that growing up and having been in clinical research for now over 25 years, it was so normal to me, but it also still feels so foreign to me. And I remember being given literally a-hundred-page consent forms before I could read. And I remember literally calling Columbia Hospital my second home and none of my other peers could obviously relate to that experience at all. But I would see all these other kids at the hospital who were going through the same thing and also just seemed very confused. And so it felt like I was kind of living in two different worlds.

And I remember going to college and when I decided to study public health, kind of learning about the four main principles that guide research and the ethical principles that guide them. And I remember thinking like, “This isn’t actually that complicated, or it doesn’t need to be.” Like, yes, these—“benevolence” is a really big word, but it means being kind to people. Right? And so on one hand, I thought, “Well, these are good principles for any of us to live by and any kid to live by,” but be like, “Yeah, they’re not being translated right now to help children understand what they’re going through.”

And also, I think a lot of the times that I was in clinical research, I felt alone and scared and I didn’t know what was keeping me safe. And it was kind of this blind trust throughout my whole life. And so I think kind of having the comfort of knowing that there were these things guiding what people were doing and that they were protecting me was important and something I wanted to share. And I think a big plotline in my story is how much Yale and my experiences at Yale shaped me into being ready and able to give back because I certainly wasn’t there and I wanted to not touch public health with a ten-foot pole when I started college.

And so, I wrote that book out of a class on “Introduction to Global Health and Ethics,” and it was during COVID. And so there was all of a sudden a lot of interest in clinical research and for the vaccine. And so it felt like a good time to kind of do that. And it happened to be the final project that we had for that class. And so kind of a bunch of things aligned at the same time. And I think having that been my junior year, I was ready to take that step, whereas I don’t think there’s any way I would’ve been freshman year.

And then yeah, I think through Howie’s class, which I’m happy to talk about at any point, that was kind of the big first step in me realizing that my experiences as a patient and someone with a rare disease could be applied to a broader scale and also interact with healthcare on a broader scale. And I think even interacting with other students as a student and then as a TA over time kind of was that first step in kind of giving back to my immediate community. And it feels less scary as you keep doing it and it feels less, or more, rewarding as you keep doing it. And so I think that kind of enabled me to yeah, publish that book and then take on speaking engagements in PhD school and all that on a bit of a broader scale. So yeah, it definitely was gradual, I would say.

Harlan Krumholz: Howie mentioned your wedding and there is, actually was an article I read about it that was in a beautiful picture of the wedding. But I wanted to ask you, I read that you met your husband on Hinge, which I loved because it’s such a normal human detail in the context of such an extraordinary life where you’re navigating so much. What was that experience like for you? Because it seems like also a very brave thing to say, “I’m going to go on a dating app and...”

Arya Singh: Yeah. Yeah, it was during winter break and I think a big part of college is dating and I hadn’t really had that experience yet. And if I had, they’d been very negative experiences and all of those negative experiences had been directly related to having a disability and that was very frustrating. And so I think kind of being home and it being COVID, I was ready to get out of the Yale circle a little bit and I was frankly bored. It was during winter break. And so yeah, I tried, but I think because of all those negative experiences, I think 95% of people who have a physical disability are very despondent and don’t have a lot of hope about relationships and dating.

And so that was kind of my mindset going into it. And I honestly think that made me braver because I think having the low expectation of like, “Eh, it’s not going to work out. This is just for fun” was helpful. And I had kind of built up a thick skin by then. And I think in some ways the date, the physical disability made the aspect of Hinge and online dating scarier, but I think at the same time, every single one of my non-disabled friends also has horrible dating stories and also has horrible online dating stories.

And so I think there was something comforting about kind of going through that together. But I think I’d learned the hard way that making my wheelchair the front and center of my profile was not the way that I was going to have luck, but also it was a fine balance to strike. I didn’t want to hide it and then have to deal with the aftermath of that. And so it was like subtly in a lot of photos. And I remember being nervous because my husband Logan and I were talking a lot and it was getting to the point of going on a date.

And I remember finally he just kind of said like, “Oh, also I just wanted to say I saw that you’re in a wheelchair and I just wanted to make sure that anything I planned is accessible to you. I’m going to be honest, I’ve never really had a lot of experience with someone in a wheelchair before, so I want to make sure I’m thinking of everything.” And I think there’s just not a lot of that transparency. Right? With people who have physical disabilities.

I think a lot of, and Howie and I have talked about this too, but a lot of times people just have so much discomfort around it and they don’t want to make you uncomfortable and so they say nothing and that can backfire in really serious ways. The honesty and the respect in which that conversation was carried out was the first time I had experienced that and genuinely just so uplifting. Like, I remember being so excited after that and not really caring how it went because I had had that good positive experience. And then yeah, I think after that, I felt so much more comfortable—

Harlan Krumholz: Is that the first person you’d gone out with was Logan or were there others?

Arya Singh: It was! Yeah.

Harlan Krumholz: Wow.

Arya Singh: It was.

Harlan Krumholz: Wow, that’s amazing.

Arya Singh: I got lucky because, yeah, I don’t envy my friends who have been on dating apps for years and I applaud them for the stamina because I was running out of stamina. But yeah, I got really, really lucky. And I think I remember in that first couple weeks of not really knowing what would happen when we went back to school, just being really grateful for the experience no matter what.

Because I think I remember just thinking about, “I want to share this experience with other people with physical disabilities.” Because I think just knowing that you can have that experience and have it be a good one and a respectful one was something that I had never really seen. And so was important to me to kind of experience and then share back and hopefully provide some hope to other people.

Howard Forman: Can you speak to what it is like to be on Yale’s campus with mobility issues? I’ve known, I think, three students over the years that have relied on a wheelchair, and that is disproportionately smaller in numbers than they are represented in the population. And I’m not blaming Yale, I think this is probably true everywhere, but just for our listeners to understand what it means to be bound to a wheelchair.

Arya Singh: Yeah. I mean, I think I’d start by saying my whole life has been the story of “when there’s a will, there’s a way.” When there is a commitment from the community to make it work, even if it’s not easy, that ends up being so much more impactful than a space that is 90% physically accessible, but no one really cares to include you.

And my parents found that, and I think that was ingrained in me when I went to Friends Seminary, which is where I went to high school in the city and middle school, because Friends was literally the only school that was a private school in New York City that would accept a kid in a wheelchair.

Howard Forman: Wow.

Arya Singh: Literally and explicitly to my parents.

Howard Forman: Wow.

Arya Singh: Which you can say is probably illegal, but the reaction from schools was kind of like, “Well, if she can make it work, great, but we’re not going to hold the door for her.” Quite literally, a school said that. And so we ended up at Friends, and you know, at the time, no one knew how that would go. Friends is the oldest co-ed school in New York City. And so that was not an ideal situation to walk into, but they made it work. And so they moved classrooms, they moved what field trips would have been, they... if there was a broken elevator, they would change where the class location was there.

They came up with these really elaborate fire plans for me that all the teachers bought into. And going to school with the same 50 people for seven years was really helpful in terms of building that community and normalcy. And so I think at the time when I was looking at colleges, I had kind of grown accustomed to having that will and there’s a way. And so the physical landscape mattered a little bit less to me. And I actually had done a summer program out at Stanford, which is one of the most accessible Ivy League–equivalent schools in the country. They have some of the highest rates of people in wheelchairs and frankly had a miserable experience.

Howard Forman: Wow.

Arya Singh: There was just no acceptance and understanding from the other students. And I remember that was a huge shock to me in terms of like, “Whoa, maybe the culture and community matters way more than I think.” Because frankly, I’d taken Friends for granted up until that point. And so when it came to decide where I was going to go to college, it was going to be Barnard, Stanford, or Yale. And I remember at the time I felt like Barnard was a little too close to home.

It would’ve been the safest option, but I kind of wanted that independence. But because of the experience I had at Stanford, I wasn’t willing to risk that. And it was so far from home. And so my dad also went to Yale and so ended up there. But I remember from, really from the beginning, I think that Yale’s commitment to making it work and understanding that the circumstances were less than ideal is still remarkable to me. I mean, I was in Pauli Murray College, which has double doors to enter all of the elevators. And I remember we did a walkthrough and my dad was like, “Guys, this is a new college. What are we going to do about this?”

And so they were like, “Oh my goodness, okay, you’re right.” And so they wired and built a remote system so that I could open every door in the entire Pauli Murray and Benjamin Franklin (which is connected) College. And I think that was just a really hopeful starting point. I think to be able to do that in a couple months and make a very not-accessible infrastructure very accessible so quickly and more than what they needed to do. Right?

They could have probably just wired the system, the path that I would use every day and they didn’t. They made it so I could literally go everywhere, including the gym, which I probably would not go to. And so I think that, and then I think yeah, just meeting faculty like Howie and students who were just really willing to make it work was remarkable. I mean, whenever I’d wake up and it would be snowing, I would already have an email from the disabilities office being like, “We already cleared the path for you to get to class.” And that was amazing.

Harlan Krumholz: That’s awesome.

Arya Singh: And so yeah, I really think that the commitment was there to make it work and that that was largely unanimous. However, I will also say that, yeah, Yale is old, and there are things I couldn’t do and there were places I couldn’t go. The Yale Bowl, for example, is really old and their accessible seating is really horrible. And so there were some things I had to miss out on or do very differently, but I think that kind of that give-and-take is always going to be something that someone experiences as a wheelchair user and that wasn’t new to me.

And so I think, yeah, and I was trapped in a few classrooms and elevator buildings and... but it all worked out and it was okay. I think the one thing I would say is that, as you mentioned, Yale hadn’t had a ton of experience with people in wheelchairs. And to my knowledge, I was really the first to use a wheelchair 24/7 and have 24/7 care and not be able, not have arm strength. And so I think there was a learning curve for the community. And I think that I experienced that pretty heavily freshman year.

And I think there was an article called “Beyond Broken Elevators” that I ended up publishing that was a response to an article written by a senior at the time who was pursuing journalism. And I think she had absolutely good intentions and she had asked to interview me about what it was like to have a disability on campus and ended up kind of making my experience look very isolating and bleak. And were there things that were hard? Absolutely, but I wasn’t okay with kind of the perception from the community being that people who had physical disabilities were having this very sad, lonely life. And so I had written a response kind of filling in that color.

But I remember that weekend was very hard because I remember when she had published that article, I was going to a party and three different people on the way from my dorm to that party stopped me and were like, “Oh my God, we didn’t realize your life was so bad here,” like, “Oh my God, we’re so sorry for you, oh my God.” And I was like, “Whoa, whoa, whoa, that’s not the narrative I want people to have because it’s not true.” And so I think, again, I would die on the hill that I don’t think there was any mal intent, but I think there was a learning curve in terms of just being comfortable with having someone with a disability on campus that you see every day and learning how to interact with that person.

Harlan Krumholz: Yeah. I highly recommend people listen to your Class Day speech as you sort of talk about that. And then the thing you wrote in response to try to help people and the kind of support you get was really amazing. I took a look at your thesis on students in wheelchairs leaving home for college.

And what struck me about it was that, like you’re saying, because you’re talking about Stanford, I mean, I think, a great segue from that to the more general, which is, it’s not just about logistical, like you’re just saying and this is what you wrote in the thesis, but it’s about identity, independence, uncertainty about how you’ll be supported in the environment.

I thought remarkable insight as to, like, that the culture really drives a lot of this. So having done that thesis and having done that research, how do you transform a place that may have all the structural things but doesn’t have the right culture? How do you help create that?

Arya Singh: Yeah. I think for me it was having really open conversations with people and showing that I wasn’t afraid to acknowledge and talk about my disability and the ways that it did or didn’t impact my life. And I think that that’s ultimately what I received in return that made my experience good. I think in the beginning and in that freshman fall year, people didn’t really know what to do with having someone in a wheelchair on campus. And so it was kind of just not spoken about and people just pretended the wheelchair didn’t exist and that was that. And that backfired. Right?

And I think that that article fiasco shows the ways in which when we don’t have conversations, things can backfire. And even if things are well intentioned, that they can backfire. And so I think after that article came out and I published that article, I mean, A, I would’ve never wanted to publish that article. Right? I published that article because I felt like I had to and I felt like I had to set the story straight and I remember being terrified to do it. But I remember just everything getting better after that because I think suddenly people weren’t afraid to ask me questions and talk to me about the ways in which, yeah, my disability was relevant to my life and their life at Yale.

And I wasn’t as petrified to acknowledge it either, because I think up until that point, every person I think who goes to college just wants to fit in and have a normal experience and I wanted that so badly. And so I for sure was at fault in that too in that I tried to kind of just make my disability as nonexistent as possible. And so I think that was really when I learned that kind of leaning into that on both ends is kind of how we make these communities better and more open to people in wheelchairs.

And I think also just having people who are empathetic and kind people. I don’t think it needs to be disability-specific, but I think just having an awareness of the people around you and wanting to include people, all people, is a really good first step. And in doing that thesis work, I think yeah, a lot of the reasons that people didn’t go to residential colleges was because they just didn’t think they could and they didn’t think there was any of the systems or will to make that work.

And I think oftentimes that was true. And obviously I would say to you, I was very blessed with the resources I had. My parents were, they ensured that I could have a pretty independent life at college and I know that’s not possible for everyone, but I think it really comes down to the culture of just wanting to learn from each other and wanting to support each other and leading with empathy and kindness in a way that I would hope we do towards everyone.

Harlan Krumholz: And I think engaging with people like you so that the institution can itself learn from people with lived experience. One thing I think you’re raising, I’m just curious if you want to share with us that I think sometimes people just don’t know the right words to use and then they’re afraid they’re going to use the wrong words and then so they end up not talking about it at all. I mean, almost pretending like there isn’t something going on here.

Arya Singh: Yeah.

Harlan Krumholz: And maybe you can help teach us a little bit about what are words you’ve heard that are well intentioned but hit wrong and what are words that have, people have used when they’re trying to engage you in a discussion about what your life is like. Because I can just imagine some people... you’re trying to live—and this word “normal” is a weird word, right?—but you’re trying to live a full life and people may be curious about your life because how you’re navigating, it’s different than how they have to navigate because of the physical issues, but they’re reluctant to engage with you because it may seem awkward. How does that work best for you? Or what are the words that open up those conversations versus words that hurt?

Arya Singh: Yeah, that’s a good question. I mean, I think for me, honestly, a lot of it was you can feel when someone is apprehensive and you can feel when someone’s uncomfortable, and that doesn’t make me feel comfortable. Right? If I feel like, you’re freaked out about someone in a wheelchair being there and you don’t know what to do and you are closed off, then I’m going to be closed off because I want to make you comfortable. And so I think it’s simple, but I think first and foremost, remembering that people in wheelchairs are just normal people who are in wheelchairs is really important.

And I think that that was kind of how I made the friendships I did at Yale was because they were able to recognize that. And then once I felt like there was some level of comfort and humanity from them, I was way more open. And I mean, this is a silly example, but I remember in freshman year and in high school, I had aides 24/7 and I would make them hide in bushes so that they weren’t seen around people or open a classroom door and bolt. And I remember once I had actually found my friends and found my footing at Yale, I realized how insane that was because, I mean, A, who was I fooling? But B, I was doing myself a disservice by hiding how I lived my life.

And so I think there just has to be this comfort on both sides. And I think I don’t know if I can really pinpoint kind of what to say and not say. I think just this genuine curiosity I feel like you can feel and I felt like I could feel. And I feel like when people were just honest and open and asking, not yes-or-no questions. Right? I mean, people can ask crazy things. I get asked frequently, “Are you going to die? Are you fine now? Why can’t you walk?” And it’s like, those aren’t really productive.

But I think the questions that actually get at how it’s impacted my life and how it impacts my relationship with those people, if it does, and how it impacts the things that we want to do together, I think are far more productive for both people. Because I think putting someone on the defensive of making them feel like they’re really abnormal just puts me on the defense, right? So yeah, I think kind of just open-ended questions were most helpful to me. And I think I say this a lot, but I think I had to take accountability too.

I had to be willing to do that too because I think my whole life, my parents had sheltered me and I think that was necessary for the time, but I didn’t grow up knowing how to have those conversations. And so I think figuring that out was hard. And I think because they had done a lot of the heavy lifting for me until college, I didn’t want to have those conversations, and those felt really uncomfortable to me too. And so I think I had to also grow up a little bit and learn that if I wanted to be an independent adult, I had to kind of take that step too if I expected other people to as well. So I really do think it’s bidirectional.

Howard Forman: Before we run out of time, I just want to give you a chance to tell us a little bit about the thesis and your PhD and what the focus is for you.

Arya Singh: Yeah. I mean, I think from all of the experiences I had at Yale and after Yale and as an adult, I realized that population and public health was kind of where I would make the most impact. And I think that was kind of started as a child of just my brain and my, and yeah, my intellect would kind of be how I made a difference in the world if I wanted to. That kind of carried me through college. And then as I kind of honed in on what I actually wanted to do and focus on public health, that kind of developed now.

And I think I’m going to call Howie’s class out again, but I think Howie’s class really was when I realized that my experiences as a patient could affect the community way more broadly than just people with SMA because I never wanted to devote my life to only people who were exactly like me. And even maybe not just rare diseases alone and how that interacted with other parts of the population in healthcare, like healthcare spending.

And so I think when I got to PhD school and started to think about what I want to do my research on and where can I have the most impact for the most people, I think quality of life has been something that’s been really important to me and something that I’ve tried to spread throughout my whole life. I think whether it’s in the personal ways of dating or going to Yale or having friendships and kind of sharing those friendships with the world or speaking at commencement and being willing to kind of share the ways in which my life was really normal and had a high quality of life has been important to me and I didn’t even realize at the time. And I think now kind of focusing on how I can apply that to a broader scale is something that I’m really interested in.

And so right now I’m planning on doing my dissertation on quality of life for children with chronic illnesses and hopefully rare diseases, but yeah, chronic illnesses or children with special healthcare needs. And I’m about to start a research rotation with someone who is doing the impact of workplace accommodations and the impact of work for people who have breast cancer and how working and being supported at work was really important for their quality of life. And so I think that’s just kind of another way of showing me in which what I’m interested in can be applied to a lot of different populations and in a lot of different ways. So that’s kind of how my path I think led me to where I am now.

Howard Forman: You are an amazing person. I’m so privileged to have met you and know you, and we’re so grateful to have you on the podcast today.

Harlan Krumholz: Thank you. Thank you so much, Arya. It’s a gift to us to get a chance to talk to you.

Arya Singh: No, thank you guys for having me. I really appreciate it. It’s a great full-circle moment. So I remember when this podcast was starting when I was working for Howie.

Howard Forman: Yeah.

Harlan Krumholz: And Howie is amazing, isn’t he?

Howard Forman: Yeah.

Harlan Krumholz: I mean, really is amazing.

Howard Forman: We don’t have to do that, but thank you.

Arya Singh: Listen to my last podcast. I give Howie a big shout-out, so it’s in there.

Howard Forman: She does. She does. I know it.

Harlan Krumholz: It’s good. Well, Howie.

Howard Forman: She’s great.

Harlan Krumholz: That was incredible. That was incredible.

Howard Forman: Yeah, I couldn’t be more proud of her. Yeah, she’s awesome.

Harlan Krumholz: Oh, gosh. For those listening, we’re going to go a little longer today on the podcast because I just think that was just so illuminating and she was so amazing. But let’s get to...

Howard Forman: She’s great.

Harlan Krumholz: We got to get to the last part here. Howie, one of my favorite parts, hearing what you’ve got to say, what’s on your mind this week?

Howard Forman: Yeah. So I mean, I’m going to hopefully keep this short, but last week, Secretary Kennedy of HHS withdrew a pending proposal to ban those under the age of 18 from using indoor tanning beds. This proposed rule had been sitting for over a decade in some version of purgatory. And I don’t understand why it remained in this status, but my guess is there were sufficient forces from industry that prevented Obama, Trump, Biden from finalizing it. And again, I don’t know more than that.

And again, I’m not going to try to hypothesize and I do not want to imply any maleficence on the part of the secretary, but I do want to point out that there is enormous evidence that these tanning beds are a risk factor in melanoma and nonmelanoma skin cancers. The risk of melanoma is doubled over the lifetime if one uses these tanning beds. And for those who start before the age of 20, it may increase that risk by more than 50%. The proposed rule also included some other informed consent issues every six months, even for adults and some other regulatory changes.

To me, there is a basic and simple question. Is there substantial evidence of harm to a child under the age of 18 from the use of tanning beds and does it outweigh the potential benefits, even if so? In this instance, to me, this is a no-brainer. We don’t allow children to smoke legally. We don’t allow them to drink in public establishments or buy alcoholic beverages, and we require informed consent from their parents for major medical procedures. Ten states already banned this.

Several more require informed consent. Is that enough? Should federalism prevail here and we allow parents and states to regulate this on their own? In my world, no. I think we have a duty to protect children from what is a very alluring and marketed effort to make oneself potentially more attractive despite the obvious long-term harm, which by the way, is part of the reason why teenagers once smoked to excess. At the very least, parental consent seems important. I’d be curious to hear your thoughts on this, Harlan.

Harlan Krumholz: Yeah. This is a really interesting one, Howie, because like you said, there’s so many different instances where we do say that people should be of the age of consent in order to expose themselves to specific risks. And that makes a lot of sense that the tanning stuff.... Of course, we’re not going to control people getting out in the sunshine.

And we actually want people to be outside and playing, but this sort of concentrated exposure simply for cosmetic reasons seems misplaced. And it does seem like a place that we should be ensuring that people are fully informed who are using it and for people who are below the age of consent. It makes sense to me that there should be some restrictions on that. And in addition, I mean, I think there’s some sense that these earlier exposures actually may be—

Howard Forman: Higher.

Harlan Krumholz: ... even more important than later exposures. Of course, this kind of evidence accumulates over lifetimes, and it’s hard to make direct ascertainments. But even with uncertainty, if we’ve developed a culture where people really have to potentially, whether with certainty or with some uncertainty, put themselves at risk like this just to look tanned, it seems like an area that there’s, you know, what’s the harm in restricting that?

Howard Forman: Yeah. No. Look, I just think this is a challenging topic. It was in the news, and that’s why I wanted to talk about it because I think the news portrays it as “look at the other horrible things Secretary Kennedy did.” And maybe that’s true. I don’t know the reasons why they did it, but put aside what they’ve done in removing the proposal. It is something in the same vein as smoking and alcohol and other things. And we should have uniform standards for where we draw lines to protect children.

Harlan Krumholz: That’s right. That’s right. Way to go, Howie. That’s a good topic.

Howard Forman: Thanks.

Harlan Krumholz: You’ve been listening to Health & Veritas with Harlan Krumholz and Howie Forman.

Howard Forman: So how did we do? To give us your feedback or to keep the conversation going, email us at health.veritas@yale.edu or follow us on any of social media, including our Instagram account.

Harlan Krumholz: Howie, what would happen if every one of our listeners actually left a comment? What would happen? Do you think it would really help? That would be a great challenge for our listeners. Just every one—

Howard Forman: I would love to hear comments.

Harlan Krumholz: ... just leave a comment. You can do it on Apple. You can do it wherever.

Howard Forman: Anywhere you want. We’ll read it.

Harlan Krumholz: Just leave a comment and...

Howard Forman: We’d love to know what you’re thinking.

Harlan Krumholz: Yeah. That would be an amazing thing, to challenge people. So that helps people find us. It gives us a higher profile, and it lets us hear from you.

Howard Forman: Yeah. We’ll take comments on anything, whether it’s on our social media accounts, on Apple Podcasts, if you want to give us a review. If you want to send us an email, we’d love it.

Harlan Krumholz: Yeah, that’s a great audience challenge. You pick the venue; we just want you to make comments.

Howard Forman: We’ll find it. Health & Veritas is produced with the Yale School of Management and the Yale School of Public Health. To learn more about Yale SOM’s MBA for Executives program, visit som.yale.edu/EMBA. And to learn more about the School of Public Health’s Executive Master of Public Health program, visit sph.yale.edu/emph.

Harlan Krumholz: And I always like to give a hat tip to our amazing undergraduate students, our superstars, and this is Tobias’s last one to staff us on, you know, what a remarkable tenure, Tobias Liu, Gloria Beck, now Donovan Brown. We have really amazing students. We have a wonderful producer, Miranda Shafer, and I get to work with the best in the business.

Howard Forman: We have a great team. I’m very grateful to all of you.

Harlan Krumholz: Howie, it’s always great. Talk to you soon.

Howard Forman: Thanks, Harlem. Talk to you soon.