July 14, 2025
Welcome to Perspectives, a signature podcast series from The Leerink Center for Pharmacoeconomics. Hosted by Dr. Mel Whittington, a health economist and Head of the Center for Pharmacoeconomics, we will be hearing from individuals across the industry to better understand and appreciate the societal impact of healthcare innovations.
Mel Whittington: Hi everyone, I’ve been excited and honestly nervous for this recording since he agreed to come on the podcast. Our guest today is Gunnar Esiason, a man who needs absolutely no introduction, but he is a cystic fibrosis and rare disease patient leader. He was on the cover of Sports Illustrated at two years old to raise awareness for cystic fibrosis. Since then, has raised hundreds of millions of dollars for the fight against cystic fibrosis through his work with the Boomer Esiason Foundation, is now the head of patient engagement and patient-centered innovation at Raven, RA Capital’s healthcare incubator, and the subject of the newly released ESPN documentary, Second Wind, the Boomer and Gunnar Esiason story. Gunnar, thanks for being here. Oh my gosh.
Gunnar Esiason: Thanks Mel, thanks for having me. Really looking forward to the podcast and yeah, excited to see where this goes.
Mel Whittington: Yeah, me too. I’ve watched your documentary multiple times. The first time I was on a plane, which was a terrible time to watch it because the person next to me was checking in on me like, “are you okay lady?” But it was hard to watch for a variety of reasons. One, I met you about two years ago. You have become a friend of mine. If you’ve ever met Gunnar Esiason, he has this presence about him. Like very few people have this just like presence about them. But like when you walk in a room with Gunnar Esiason, you are very calm and in control and just like someone who is just so like ready for whatever and ready to help whatever. And it’s like, that’s how I know you. And then, you know, watching you in this documentary suffer and deteriorate, it was like hard to watch because you’re my friend, but also just like hard to watch because it was so in contrast to what, how I know you. And then, your father was a childhood hero of mine. I’m from small town Midwest. We don’t have much besides football. And, you know, your father was a childhood hero of mine. And you think your heroes are untouchable or they don’t have the same life experiences as you do, but from that documentary, it was so clear he and I want the same goal in life. And that’s for our kiddos to outlive us. And even beyond that, he and I had the same vulnerabilities in life. And that is, we know that we alone aren’t in control of that goal. And so, it was just like, I’m an emotional wreck for that. And then I’m a mom now and watching your mom in the documentary put on this super tough exterior while knowing that inside her world’s just crushing. And then I really lost it as it shows you meeting this woman who was your girlfriend and now your wife and watching you guys fall in love. But to think that you might not have a future, not because you’re not meant to be together, but because you didn’t have that many years left to live. And so, I’m like, “whew.” But then that wasn’t the end of your story, and it wasn’t the end of the documentary. A groundbreaking treatment for cystic fibrosis was developed and approved and you’re still alive and you’re married with kids of your own and your mom and dad are grandparents and you know now their goals are probably for their you know grandkids to outlive them and you know talk about an emotional roller coaster and you know if anyone hasn’t watched this documentary everyone must, must watch it.
Gunnar Esiason: I appreciate that. It’s a really great review of the project. The ESPN team did an awesome job with it. And one of the interesting things about it actually is that Jeremy Schaap, the writer on E60, actually covered my story back when I was in high school. So, there’s a part during the documentary where I had this crazy high school hair.
Mel Whittington: Hair. That helped me.
Gunnar Esiason: And every time I look at it, I’m like, my god.
Mel Whittington: And the posters in your college dorm room. like, OK, I got to hang on to these things. This is bringing some lightness.
Gunnar Esiason: Yeah, exactly, it turns out I was a normal person. They filmed the story about me when I was a junior in high school playing high school football for like my local team. And Jeremy Schaap gave me a call last spring, so spring of 2024, gave me a call and he had read an article about CF in the Atlantic. And it was sort of like a very similar, you know, retrospective look at CF since Trikafta was developed. And sort of like one of the interesting things that sort of came out of that article was that people with CF, a lot of us, we found our identities and community online, meeting with other CF patients, me included. You know, I number of friends with CF that I’ve met through the years through the work at BEF, but also my own personal life. And since Trikafta was developed and is at the market, those really rich online communities aren’t sort of what they once were because people have moved on with their identities. And Jeremy, the writer, found this to be such an interesting thing. And he didn’t even realize what had happened in CF from a development perspective. And so, he reached out to me and said, “you know, we don’t often get the opportunity to tell the story to completion. And instead, it’s actually often something that like is left lingering for our viewers.” I mean, ESPN does so many great stories. They have the My Wish segment over the summertime. They have lots of great E60 stories. And they tell lots of stories about professional athletes who unfortunately have had very serious illnesses into their lives, and they still have to confront it. There’s the Alex Smith story where he had the horrible leg infection. And oftentimes it’s really just not an ending. It’s sort of like left where the athlete continues to raise money and sort of like everyone hopes for the best. But CF is interesting in that there isn’t quite an end to the story, but there’s certainly a culmination where I’m a very different person than I was in that first documentary, or that first E60 episode that aired about me back in high school. And if you watch that episode back from 2008, something like that, the story is left at eventually Gunner will need a double lung transplant. And sort of like a scary thing to hear, of course, when you’re in high school, but totally different than where we are today, right? And an entirely different conclusion to the documentary. So, for me, like when they pitched the idea to me, I was like, “okay, cool, like I get to be the star of a movie, I guess.” But it was also cool for me because it was a writer who had known me very well over the years and could also tell the story very, very well. And so, I think when they approached my family and the foundation about doing it, the answer was obviously yes. And I think to your point about watching me suffer, it was an interesting trip down memory lane for me because it’s been so long since I’ve lived like that or I’ve felt the worst parts of CF. And when we were digging for videos and pictures and stuff like that. Like was definitely a tough trip down memory lane to hear the old CF cough in some of those videos that we had dug up. But it’s really just sort of, I think, a testament to the progress that’s been made. And unfortunately, you know, my parents are now really on the other side of this where, you know, they get to be grandparents and they get to worry about my kids instead of me, which is amazing.
Mel Whittington: They’ll always still worry about you too.
Gunnar Esiason: Yes, I know they will. I know they will. Yep, that’s it.
Mel Whittington: You’re a dad now. You know how it goes. That was something I’d wonder too is having you watch it, like what that would be like for you to watch this. And it’s interesting to hear you say that it was hard to watch because that’s so not how your life is now. Can you tell us a little bit like before you have Trikafta, before you have this groundbreaking treatment that has completely changed your life, what was a day in the life like?
Gunnar Esiason: The days were long. I think growing up my, for those listeners who may not totally know what CF is, it primarily affects the respiratory system of patients who unfortunately live with it. And so, my day or the typical day of a patient is like just spent taking care of the pulmonary manifestations of the disease. And really as far back as I can remember, my days revolved around two sort of like real long treatment sessions, once in the morning and then once before bed, sort of like during the healthy times. Of course, like as you fall into a flare or as your health progresses, like things change. But it’s really just a number of nebulizers in the morning, right? There’s your Albuterols of the world, the sort of like the steroid to open up airways. There’s a drug we take called hypertonic saline, which forces patients to cough up the thick mucus that lives in our lungs. a drug called Pulmozyme, thins the mucus, again, making it easier to cough, and then an inhaled antibiotic, which ultimately treats the infection that a lot of us live with because the thick, thick mucus in our lungs is a great place for bacteria to thrive. It’s sort of like one of the real unfortunate parts of CF is as you continue to treat that bacterial infection, it just becomes more and more difficult to treat over our lifetimes. And so, the disease naturally progresses. That treatment routine in the morning is about 45 minutes to an hour. And then again, 45 minutes to an hour in the evening, sort of like at baseline in childhood. As you get older, the treatment sessions grow as you start to deal with more and more complications. By the time I was 22 or 23 years old, graduating from college, and I will admit, I think I probably, when I was a college student, I tried to have a good time. You saw the posters that were in my college dorm room and plenty of good memories, you know, out with friends and things like that. Yeah, that’s the way it is.
Mel Whittington: Good, same.
Gunnar Esiason: My health really took a took a massive decline to the point where I was basically staring down the barrel of end stage lung disease in my early 20s. And there’s a really hard existence for me for a few reasons. One is, you know, I had sort of like my parents had enabled me to always think forward and sort of like make something of myself. But it just wasn’t possible because my health had really finally caught up to me. And after college, I was basically living at home with my parents with really nothing to hang my hat on. And it was tough, like both socially, emotionally, and then finally physically. Because you know, my friends that I went to college with, they were sort of moving to this city or that city, starting their careers, getting their first job after college, making money, sort of living on their own. And yet I was back to living how I was in high school. And it was tough from that perspective, but it was even compounded and made more severely difficult because I mean there were mornings when I would wake up and I couldn’t even get to the bathroom to brush my teeth because I was just, I just could not breathe. And so, I remember having a very stark conversation with my doctor and I think they actually talked about in documentary where my doc basically told me that they were running out of treatment options and what she was really saying is that the bacteria that was living in my lungs was becoming so resistant that intravenous antibiotics could no longer treat it as effectively as they could when I was young. And I mean, we were at the end of the barrel. We were on the Polymyxins, the meropenems of the world, which are just really toxic and sort of like last line antibiotics. And when they don’t work, it can get pretty scary. So unfortunately, that’s where I had ended up.
Mel Whittington: And this is probably, I think in the documentary you said, “it was totally obvious to me at the end of summer 2013 that I would be lucky to have a handful of years to live.”
Gunnar Esiason: Yeah, yeah, I think it’s, that is exactly what I was confronted with, right? Like I was really, it was really stark and obvious to me that, you know, had I continued on that trajectory, like I wouldn’t see my 30th birthday.
Mel Whittington: And at 2013, you were what? 22?
Gunnar Esiason: I was 22, I was 22 years old. And it was sort of like the only option for me at the point was to think about clinical trials, right? Think about something that was not commercially approved yet and hope for the best. And that’s sort of like, that’s where I was left.
Mel Whittington: Okay, doing some math, that’s 2025, 12 years after 2013, more than a handful, you’re still alive.
Gunnar Esiason: More than a handful. Yep, you’re still here.
Mel Whittington: And you know, so what changed?
Gunnar Esiason: What changed? Well, I got into my first clinical trial at end of 2013. So, a few months after that conversation with my doc and my journey into the clinical trial world was not a straight line. I was definitely one of those people that was like big pharma is the enemy kind of people when I was like a bright-eyed 22-year-old. And so, what I had to do to convince myself that I would be safe in the clinical trials, I decided to learn as much about the industry as possible. Which is like not a reasonable thing to ask anyone to do, especially when they’re quite sick. And I remember reading Barry Worth’s books, Billion Dollar Molecule, The Antidote, Sally Smith Hughes wrote a book, Genentech to Beat Me at Biotech. I wanted to understand the incentives of the industry to see that I would be safe in these trials and not just like a guinea pig. And so, after months of frantic reading while my health is declining and sort of going through hospitalizations and things like that, it’s like, okay. I’ll probably be safe. So, I enrolled my first clinical trial and of course it didn’t work, but I learned a lot about what it meant to be a clinical trial participant and my most important learning, the one that I hang onto today is, especially in the rare disease world, there is no sense of progress at all unless patients are willing to enroll into clinical trials. As soon as I got to that first one, but although it failed, I felt a deep sense of responsibility that, okay, well, if I’m not gonna be able to do much with my life, because I was still sort of like living at this baseline assumption that like it probably wouldn’t get better from here unless a miracle happened, I could at least put myself through clinical trials and sort of like help advance the cause of CF, as many people had done for decades leading up to that point. Finally, long story short, I ended up getting into the Trikafta clinical trial in early 2018. It was sort of like the end of the road for me. Like I remember thinking on the way to the clinical trial site, the CF center in New York City, that, this would basically be it, right? Like if it would either work or it didn’t. And I think we had a lot of reason to think that it probably would be that it would work with the phase two data were so strong that we were at least left feeling optimistic. And yet there’s always like the chance to get the placebo and sort of all these other sort of like, these nuances around enrolling in the clinical trial.
Mel Whittington: Right, right.
Gunnar Esiason: But fortunately for me, when I got into the Trikafta trial, within 36 hours, I knew I was in the active drug and not the placebo. Like I went to bed one night, I woke up and like my CF was totally gone. And it’s like one of those like most remarkable experiences I think I’ll ever have in my life. And like I still get chills thinking about it because it was like such a just a profound week for me and for my family and everyone. And I remember like going to bed and feeling rested the next morning. That’s how I knew it was working.
Mel Whittington: For the first time in a long time.
Gunnar Esiason: And I just like didn’t cough. Like I never coughed. Like I started to stop bringing mucus up. I went back to the doctor and sort of like my pulmonary function tests were going up for the first time in my life. And so yeah, it was a pretty remarkable experience from like sort of being on the doorstep of end-stage disease to like, okay, well, this is working.
Mel Whittington: Now what do I do? Wow. Yeah, there was a scene in the documentary between you and your dad. And, uh, you know, when he was like, I think you’re, I think you’re on the drug. I think you’re on the drug. And I think that was kind of the first time he really, his emotions kind of broke of, holt cow, he’s on the drug and it’s working. And everything I’ve worked for is, is happening. So, after the trial, Trikafta gets approved. You then made a statement in your documentary that said, “it was daunting to know I was no longer dying.”
Gunnar Esiason: Yeah. Yeah, it was. It was daunting. And it was actually still sort of during the trial that I had that sort of realization for myself. So, to get the timeline straight, I started the drug, or I started on the trial, like day zero of the trial was April of 2018. It was sort of like August of 2018 when my wife and girlfriend at that time, Darcy and I decided we were gonna go on a road trip. We’re like, “okay, well, like, I’ve been on the drug for several months now, like, let’s push it and see how far it’ll get us.” And I’m a bit of a history buff, so I got to choose what we went to do. So, we lived in New York at the time, and we drove to Gettysburg and then we did a weekend in DC. And so like, figured like, okay, we’ll just do like a long road trip, that kind of thing. And coming back after what was an awesome like a fun awesome weekend, of course, it was like hot as heck DC in August I don’t know what we were thinking and yet that’s what we did. And so, we drove back to New York, and we were like stuck in horrible traffic on the Jersey turnpike. And my girlfriend at the time looked at me and she said “well what do you want to do with the rest of your life” and had never dawned upon me that like I could ever think that way because like up until that point I was 28 years old, I had only ever thought like one day at a time or sort of one, you know, one week in the time, never five years, never 10 years. I never had a 10-year plan. and I sort of just exactly, I was never,
Mel Whittington: You never had to, you know.
Gunnar Esiason: I never had the luxury of being able to think that way. I just sort of remember being like stuck in thought and being like, I guess I have no idea what I want to do. So I sort of gave it sometime and gave it some thought and like, she was really prodding me and pushing me to get out of the comfort zone and was like, what about this? What about this? What about that? And so, over the next week or so, I took the opportunity to deeply reflect and it really struck me that I had maybe one of a handful of options. One is I could continue just like this breathtaking, no pun intended pace of living one day at a time. And that wouldn’t be sustainable at all, right? Because if you sort of like living that way is just not productive, it’s not sustainable and sort of like I had to break out of that mold in some cases. Two, I could sort of just move to New York City, find a job, and figure out what was next. But it would be really hard to do that because my career up to that point had been so broken up because of my health, what had happened to me. Or three, I could take an opportunity to figure out how to invest in myself and really take a moment to think about what I wanted to do. And really what I wanted to do was sort of figure out it would be a way to replicate what happened in CF for other people with rare diseases. And sort of the magic of the CF story not really covered in the documentary is how Trikafta came to be. It’s really the culmination of decades long partnership between the industry and the public space, the Cystic Fibrosis Foundation and academic research centers, and the Cystic Fibrosis Foundation’s forward thinking of creating a venture philanthropy model where the foundation makes for-profit investments in the industry. And the more I thought about it, the more that seemed to me like the way that I wanted to go. I had known a lot of people in industry. I had known a lot of people deeply involved in advancing CF care and CF research. And so, for me, it was like, “OK, well, where’s the best place to actually do this? Should I get a job in the industry? I just start working my way up?” And the more that I thought about it, I learned that the best path for me would be to go to business school and really figure out in the thick of a learning environment what good would look like for me. So, I ended up enrolling at Tuck up at Dartmouth, which oddly enough is actually one of the biggest CF research centers in the world, which is a plenty place for it. And that was sort of like what set me on my path to break out of that survival mode that I was in.
Mel Whittington: Wow. And now you do have a career in biopharma investing.
Gunnar Esiason: I work at Raven, RA Capital’s healthcare incubator and so I’m part of the incubator here at RA Capital, which has been a lot of fun. Another like fun story of how I got here was when I was in school, I read Peter Kolchinsky’s book. He’s the co-founder and managing director at RA Capital. He had wrote a book, The Great American Drug Deal. Do you not get royalties in the book for, although it sounds like I may be selling it here in a minute. And in the book, he actually talks about the CF story and sort of like what can’t be meant to the CF market, what Pulmozyme meant to the CF market, and it sort of is at its core about drug pricing and value and the affordable innovation that Peter talks about. And I remember sort of being like a first year MBA, being like, I can like email whoever I want in this world. I read his book, and I remember sending him an email sort of like out of the blue and I said, “hey, Peter, you’re never gonna believe this. I’m a person living with cystic fibrosis who takes Trikafta. And I agree with your views on drug pricing, like would you mind getting on a Zoom call with me?” And he responded like maybe in 15 minutes.
Mel Whittington: Two seconds.
Gunnar Esiason: And next thing you know, we were on a Zoom call and here we are five or six years later. So, you never really know what can happen when you send someone an email like that.
Mel Whittington: And you talked a little bit about what it took to bring Trikafta to be a commercialized product. And I think our industry has so many phenomenal stories to tell, yours of course being one of them. But I think less told is the failure and the money and the risks that it took for these stories to be a reality. And another thing your dad said in the documentary was, “money buys science, science buys life.” Those are facts.
Gunnar Esiason: Yeah, they are.
Melanie Whittington: Can you expand on that? a little bit more on how Trikafta came to be or even just more generally, you’ve chose a career in biopharma investing. It is costly. It does require risk, but it also creates these amazing things.
Gunnar Esiason: My dad’s quip there is actually from Bob Beall. Bob Beall was the former CEO of the CF Foundation. And that was like his little line that he used to parade out there when it came time to sort of raise the capital campaigns for the CF Foundation, which ultimately went to the CF Foundation’s venture philanthropy model. And so, I think one of the things to that point that I don’t think the general public really sees when they think about some of these innovative pharmaceutical products is the time, effort, and failures that go into it. Because it’s not exciting. It takes forever. It’s not like watching a football game where the ball just goes back and forth down the field. It’s maddeningly slow science. And I think that because people don’t see the struggle, there’s really just sort of just a skewed perception of what reality looks like or what good looks like from a public perception. And if you think about it, I’ll sort of like opine for a moment on maybe why the pharma industry doesn’t have the greatest reputation. But if you think about it, the only interactions that people actually have with prescription medications come in really one of a few different ways. The first is they go to their local retail pharmacy, they’re probably feeling sick, everyone else in the store is probably feeling sick, or they have a family member who’s feeling sick, and when it comes time to pick up their orange bottle at the counter, they have no idea what they’re gonna pay for that orange bottle, affordability, which is totally different than the value of medication, but that is an experience that basically everyone in the US has had, right, at one point or another. The second experience that people have is when they’re getting medication inpatient or in infusion center or in hospital and the bill shows up in the mail a month later and it’s like out of sight, out of mind until that happens and sort of like a lot of things happen when that bill shows up. It brings back horrible memories of being in the hospital. It is totally disconnected from the reality that like somebody may experience in the infusion chair or the hospital chair, they have no idea how to even read the bill. Or finally, they may not even have an understanding what their benefits cover or not. And so, it just creates more stress. And then finally, the other sort of typical way people interact with the industry is the direct-to-consumer commercials. And I’m not going to opine on the value of a commercial, but the commercials really just show the final product. For Ozempic or for Gleevec or for whatever, you really just see the commercial, hear the jingle, and that’s all you think about. Like what they don’t show is they don’t show the patients who enrolled in the trial, the scientists or the researchers or the bench scientists failing it, know, XYZ experiment, you know, 15 years ago. Like it’s just totally out of sight, out of mind and not at all related to the experience of consuming medication. And so, I think those three things combined are just so prominently impactful in people’s lives to this point that they’re not given the opportunity to stop to think about what it actually took to get there. When you use your iPhone or your Android, you don’t actually think about Steve Jobs tinkering with early operating systems. You just think about making the phone call or sending a text. That’s really it. And so, I think that’s the thing that’s lost. But for you and me who work in the industry, we know the amount of resources that it or the other research it should take to get a drug from the test tube to the patient and ultimately behind the pharmacy counter. And it’s time intensive, it’s capital intensive, and it requires a lot of people to actually get it from A to B.
Mel Whittington: So, to all of those points, drug development isn’t cheap. And, you know, for the rare few that do get approved, during the patent period, drugs are likely not very cheap. And Trikafta, the drug that you’re taking and was, you know, talked about in your documentary, I think has a list price in the hundreds of thousands of dollars. And you know, there’s a lot of political commentary critiquing drug pricing. How are those perceived critiques? How do you perceive those critiques? Are those hard to hear?
Gunnar Esiason: You know, I think I have very complex feelings on sort of the critiques around Trikafta in particularly and then drug pricing more broadly. On one hand, I think people should be entirely free to criticize anything they want. I’m not going to say like people shouldn’t be allowed to criticize like the Trikafta pricing strategy. Like, by all means, have your opinion and disagree with me. I believe I have my haters. But when it comes to thinking about like the value that Trikafta has returned to me, it’s like such a black and white contrast, right? Like I look at my life, you know, 10 years ago, basically looking down the barrel of end stage disease. I was living at home with my parents. had no job or career prospects to think of. And I was basically living in a day at a time stuck in survival mode until I was ultimately sick enough to be listed for transplant. Today, my life looks basically nothing like that at all. I have a job, I am a homeowner, I have two kids, I’m married, I went to grad school. All of these things that my life looks like today are just so starkly different. But even on a micro level, I spent yesterday power washing my driveway in the 90-degree heat that I never could have done 10 years ago, you know, pre-Trikafta like stupid menial things like that are still impactful. And I would say like, what does my life look like today? It’s painfully normal for a suburban dad. Like I hurt my back putting the kids into the car seat because the car seats are so big now. You know, and those are sort of like the little interesting things that I get to experience. But at the same time, like I have lots of friends who unfortunately didn’t make it long enough to be alive for Trikafta to benefit them. And so, you know, it is really impactful in my life to know that I was alive at the precise moment when this drug made it to market. And, you know, the only reason that it, that it, there’s a lot of reasons why I did, but, you know, some of the most important reasons that it did is because, is because, CF was demonstrated as a, as a profitable market for a pharmaceutical company to develop in. And the follow-on effects of Trikafta being as profitable as it is for Vertex has now led to the creation of dozens of CF companies that are looking to either take Vertex down or carve up a piece of the pie for themselves. And it breeds competition, and Vertex has also had to innovate themselves to stay ahead of the pack. And so, when I look at CF patients, 20 years from today, I’m very optimistic at what the outlooks will look like for them. My hope is that people born with CF today or kids living with CF today don’t have to go through the 20s that I lived through.
Mel Whittington: Yeah, there was a little bit of that in your documentary too of, I think it was Logan McGovern was his name. In your documentary, your 20s, early 20s, it did not look good. I mean, it was very hard to watch. And then it also highlights this other 20-year-old who was complete contrast to your 20s. And it seemed like the main difference was the timing of it that in his 20s, he was on a safe and effective drug, whereas you had not yet been in your early 20s.
Gunnar Esiason: Right exactly.
Mel Whittington: I think that’s the promise of biopharma innovation. And that’s kind of like what biopharma innovation means to me. I normally think of like, “okay, the things that I’m experiencing today, I hope my kids don’t have to experience.” You know, or like the fear that I have over certain conditions, I hope they don’t have that fear. Like that’s this promise of biopharma innovation that I have. Watching your documentary, it was like, wow, this was a generation. This was like, you know, probably six or so years difference in age.
Gunnar Esiason: Totally. I mean, that’s to me, it’s, I’m so happy that Logan got, has been able to live life that he has and it is true, you know, he started on sort of like the CFTR modulator class of drugs when he was, you know, just in sort of high school, getting to college and he’s great lacrosse player, was the captain at University of North Carolina, which is a great lacrosse program and then played professional lacrosse. And then has like subsequently gone on to have a sort of a great career here in New York City. And he’s just one example. Just as I am, I’m sort of like a little bit of an older example and it shows how people can be impacted in different ways at different times in their lives and sort of like what the long-term effects of it are. And maybe like the best way to contextualize this comment is sort of how our family’s foundation has had to change over the years.
Mel Whittington: Interesting.
Gunnar Esiason: My parents started the foundation. It was designed to support research to support the Cystic Fibrosis Foundation’s drug development. There’s a scene where they’re dedicating the Cystic Fibrosis Center at Cincinnati Children’s Hospital where we lived when I was diagnosed to where we are now and the foundation is now providing IVF financial assistance for adults with CF who want to have kids. And so, it’s really a remarkable journey that we have all been on as a family to sort of see what it looks like, to see what CF has looked like as it has evolved. There’s really like one other thing that I think I shared with you months ago is one of the foundation’s longest running programs has been scholarship of support for people with CF who go off to college. And we sort of realized coming out of the pandemic that all of a sudden there were more people applying for grad school than undergrad. And that was something that we had never seen ever in our applications. And all of a sudden, what was happening was people were getting healthy because of Trikafta, realizing like I did that they had to reinvent themselves, find a new identity, and invest in their futures. They, you know, of grad school is what did that for a lot of people. And so, the foundation more recently has been providing a lot of resources for CF patients who ultimately want to go to grad school and think about what their career will look like in the next like 20 years, 20, 30 years.
Mel Whittington: So cool. Kind of going on to this, to use your words, you have the luxury to be able to plan a future. And, you know, that could include grad school, that it could include kids. And I know I keep going back to your documentary, but I’m telling you, I just love this thing. You didn’t really get emotional the entire time until you started talking about having a kid and those kids.
Gunnar Esiason: That’s it. That’s it.
Mel Whittington: Why are, you know, kids are so hard. Why was this so emotional?
Gunnar Esiason: I think it was a culmination of so many different things. Like when our son Casper entered the world, was a defining moment for anyone who’s ever had kids, right? Like it’s a defining moment for anyone. But in the moment, I felt like Casper represented so much for so many people. Of course, for me, it of felt like the end of this long, horrible journey that I had been on for so many years and finally had a great experience inside a hospital, which was not something that I had had very many of. But for beyond just sort of me and my wife, I think it represented, for my parents in particular, a job well done and that was my, my first thought was how happy I am for my wife, especially to successfully deliver him and how happy I was for me to finally be a dad. But my second thought was about my parents and sort of how much Casper represented to them. And then sort of like my subsequent thoughts for there were from the thousands of people who have participated in BEF fundraising, the thousands of CF families around the country who look to my dad and to some extent me to sort of be a beacon of hope for them when they get the diagnosis. And when we put a photo of Casper on Instagram, weeks later, as people do these days, the number of CF families that reached out to me just expressing relief for their own kids was to me the emotion that I felt when Casper joined the world. It was just a sense of relief for everyone, including me. Being a parent is not an easy thing these days. So, relief is a funny way to describe welcoming a child to the world. But I think for us, Casper’s been, he’s represented not the proverbial finish line because there is no cure for CF, but he represents the largest step that I’ve seen in sort of like what can happen when a lot of people come together to solve a hard problem.
Mel Whittington: Yeah, and all of the spillovers of, you know, not only was your life positively impacted and now you have two beautiful babies.
Gunnar Esiason: Yeah, that’s it. I still do care for my CF these days. Like I still do nebulizers here and there and sort of, you know, you’d see me take my medications or you’ve seen me take my Trikafta dose. Um, it sounds like we’re on the same conference circuit. sounds
Mel Whittington: We are the same, yep.
Gunnar Esiason: But for me, it’s like the amount of time that I now spend caring for my CF is so materially less that it’s now just filled with like toddler stuff, you know, like, which is great. And that’s like, that’s what we all wanted for and what we had all hoped for and what my parents wanted for us. And, and I think, my wife has an, a line in the documentary where my son’s experience with CF will just be that I sometimes cough or that I have to sit there and do my nebulizer and he’ll climb on, on top of me. You know, he won’t really see me struggling in the hospital, knock on wood at least. Like I used to, as recently as 10 years ago.
Mel Whittington: Yeah, well, Gunnar, I don’t know how we could have ended on any better note. I think Casper represents kind of the promise of tomorrow and the promise of innovation and kind of a full circle from you on your dad’s shoulders at the age of two raising awareness for a condition. And now you and your dad together, probably I’m sure Casper will be brought into the crew as he gets older, thinking about solutions to new problems like getting more babies and more grad school.
Gunnar Esiason: Totally. That’s it. mean, I think our family’s foundation, we still have our gala annually and so just fundraising and things like that because there is a small part of the CF population that doesn’t benefit from Trikafta, right? And so those patients will need, yeah, they will need some genetic therapy to get the disease modifier that Trikafta has given to so many of us. But you better believe it. Casper has turned into a little prop for fundraising for our IVF support grant and that’s been a really impactful program that the foundation has had. There’s now been 11 or 12, we call them BEF babies who have been born out of it to CF parents. But I think at the end of the day, CF is a really good example of what good looks like from the industry’s output. And there’s still so much more to go, whether it’s in lupus or whether it’s in MS or type one diabetes or whatever. There are a lot of biological frontiers that conquer, and I feel very grateful that I get to sit at the forefront of seeing hopefully what’s coming down the pipeline.
Mel Whittington: Well, we’ve got a lot of work to do and I hope we all do it.
Gunnar Esiason: Well, thanks, Mel. I appreciate it.
Mel Whittington: Thanks, Gunnar.
Thank you for listening to this episode of Perspectives. If you’re interested in participating in future podcasts or would like to learn more about the Leerink Center for Pharmacoeconomics, please email cpe@medacorp.com.
