Podcasts

How One Advocate Went from Losing His Hearing to Being Heard

September 30, 2022

Matt Hay was a sophomore in college when he began to have problems with his hearing. He soon learned his hearing loss was caused by tumors on his nerves and was diagnosed with the rare condition neurofibromatosis. As a result of the condition, which can cause tumors to grow on nerves throughout the body, Hay has had to undergo 20 surgeries, including one to remove a tumor that blocked 80 percent of his spinal fluid and caused him to lose the ability to walk for a time. His diagnosis started him on not only a personal journey to fight his condition, but on a professional one as well as he became a patient advocate. We spoke to Hay, U.S. Director of advocacy for NF1 at Alexion, about his own journey as someone living with a rare disease, neurofibromatosis, and how his experience led him to become a patient advocate within the biopharmaceutical industry.



Daniel Levine: Matt, thanks for joining us.

Matt Hay: Well, thank you very much. Glad to be here.

Daniel Levine: We’re going to talk about neurofibromatosis, your own journey as someone with the condition, and your work today as a patient advocate within industry. You were in college. When you got diagnosed with this condition, what happened and how were you diagnosed?

Matt Hay: That’s exactly right. I was a sophomore at Indiana University and I don’t know about most people, but I felt pretty invincible as a 19 year old kid going to a big school not too far from where I grew up. And there’s no faster way to get a gut check on your invincibility than losing all of your hearing in one ear over the course of the semester, and that’s exactly what happened. This was back in 97 back when the world still used landlines, and just over the course of the semester as a sophomore, I stopped being able to hear on the phone and that’s certainly not a trait of invincibility. As my hearing continued declined in that ear, I went and had an audiogram and was referred, very fortunately, saw a very responsible audiologist who referred me to a neurologist and had an MRI that showed bilateral acoustic neuromas, which means I had tumors on each hearing nerve and was almost immediately diagnosed with neurofibromatosis.

Daniel Levine: With listeners who are not familiar with neurofibromatosis, what is it, and how does it manifest itself and progress?

Matt Hay: Certainly, and we’re talking on rare disease, and that’s an area you focus, and this is definitely part of that. I had never heard of neurofibromatosis, acronym NF. I didn’t have any friends or family that had ever heard of neurofibromatosis, which is pretty terrifying. Essentially, NF allows tumors to grow on the nerve sheath that surrounds your nerves anywhere in your body. Well, you’ve got miles and miles of nerves in your body so that means there’s a lot of landscape for those tumors to grow and regardless of real size or whether they’re benign or not, the smallest tumor in the wrong place can be pretty catastrophic.

Daniel Levine: You mentioned you were 19 and feeling quite invincible when you received the diagnosis, but this is a time of life when people generally feel like their whole life’s ahead of them. What was it like to get that diagnosis and how long did it take for the full meaning of it to hit you?

Matt Hay: I’ll let you know when the full meaning of it finally hit <laugh>. I wasn’t self-aware enough at the time, but there’s a grieving process and I spent the first five or six years just in denial. It wasn’t even like, no, I don’t have that. I fully believed that the diagnosis was accurate, but when they said these are all the things that can happen because of the location of the tumors, your hearing’s going to be at further risk and you’ll probably lose your hearing, your vestibular function. Your balance is at risk. Your facial nerve function, your ability to move your face, feel your face, blink. They laid out all of these things that could happen based on my particular case. And I thought, well, that’s not going to happen to me. I’ve lost hearing in one ear, but I still have good hearing in the other. So, that will carry me and those other things, that’s not going to happen to me. I stuck with that philosophy until every one of those things started happening to me.

Daniel Levine: Well, walk me through what happened as the condition progressed.

Matt Hay: Certainly. I like to remind people one, I’m not a doctor and two, I’m the sample size of one, so my experience is my experience. And while I do have a diagnosis of NF, because the tumors can grow anywhere, every case is really unique. For me, because of the placement of those tumors, the hearing loss was the first thing, and that’s obviously very life impactful. I started preparing mentally and emotionally for what it might be living in a quiet world. And as I was working to come to terms with that, I woke up one day with neck pain and within six weeks I think debilitating is the word to describe the pain that I had in my neck and back. And it turned out I had a small tumor in my spinal column that was blocking about 80 percent of the flow of my spinal fluid. Without getting too medical, that’s pretty bad. You don’t want 80 percent of your spinal fluid blocked. The surgery to remove that was very invasive and I woke up essentially paralyzed. I lacked feeling in my hands and while I could move my legs, I couldn’t feel them. So, I’m focused on, hey, I need to prepare for not being able to hear and all of a sudden I can’t walk, and at a time in my life where I’m dating someone seriously and we’re thinking about marriage and kids and a life together. And now all of a sudden I’m working out visiting hours at a long term care facility where she can come to visit me. And those are about the moments where that denial portion of grief really starts to end because you’re like it’s here; this is NF and the challenges that I’m dealing with NF that others deal with NF—those are very much a part of my life. It was a pretty pivotable moment for me because instead of that invincible kid sort of floating through things, that was the first of what has now been 20 surgeries and really impacted my approach to life. By that I mean, I don’t really wait for things. It was really the springboard for my own advocacy. It ignited a level of perseverance I didn’t know that I had nothing has been as motivating for me in life as wanting to walk again and then eventually wanting to hear again. So, NF really impacted my personality, not just, physically.

Daniel Levine: In what way did it impact your personality?

Matt Hay: Well, word like, I mentioned perseverance and grit are buzzwords that might show up as the second or third option if you look something up in a thesaurus, but for me, it was very much—I’m in a bed and my goal is to get to a wheelchair; I’m in a wheelchair and my goal is to get to a walker. You get up every day and you work at that and you maybe don’t see progress by the end of the day, but maybe a little bit by the end of the week or the month or the year. And it really shaped the way that I approach my relationships. My professional career that I started looking at is what am I doing now that’s going to impact, or have a positive impact on me a year from now or two years from now. And you hear about Olympic athletes and they go through a training session and they might say, well, I deposited money in the bank today, and maybe I didn’t get the payoff, but today I made a little bit of a deposit. And I think anybody dealing with a physical ailment or long recovery, if you can’t relate to that, I would encourage you to try to relate to that because it’s a really good way to get through the day to day when you think I’m never getting out of this wheelchair.

Daniel Levine: It strikes me that you’re preparing for the loss of your hearing and all of a sudden you find you can’t walk. How long did it take you to recover from that?

Matt Hay: So, you start well on the wheelchair. My wife would break me out of long term care and we’d go to the mall and she’d push me around and we’d get ice cream. Those were the little wins. When I moved to a walker that was another win, but it took a month to get there and then it took another month to get to a cane. It was really one year and it was both a literal and figurative finish line because I got kind of addicted to the measurable gains that I was seeing through physical therapy and being able to say, hey, today I was able to walk on my own to the mailbox. And I looked like I’d maybe had a couple cocktails along the way because of my balance and lack of confidence. But each day got a little bit better. And because I don’t always make the smartest decisions, I noticed that the Chicago marathon was the one year anniversary of my surgery and I decided that my finish line of being able to say I could walk again would be to finish a marathon. So, that wheelchair to walker to a cane went to walking around the block, to jogging around the block, to jogging to end of the neighborhood. Eventually, my wife and I finished the Chicago marathon to celebrate the one year anniversary of that, which is both a literal and figurative finish line. And probably my first foray into advocacy and fundraising for NF related, nonprofit organizations and patient advocacy groups was raising close to $10,000 in doing that and the feeling of accomplishment—that we did this thing and it was both personally helpful and hopeful for the NF community—was incredibly powerful. So, it seems kind of weird to say 26.2 miles is the first step, but that was really my first step into what I thought would just be a career of volunteer advocacy.

Daniel Levine: One of the things you did when you became aware that you were losing your hearing is you listened to music that was important to you. Can you explain why you did that?

Matt Hay: Sure. it sounds like I’m pivoting maybe from walking again to hearing again, but those were both happening at the same time where I’m relearning to walk and in the meantime, I’m also getting hearing aids that are bigger and bigger because now the hearing in my other ear’s starting to decline, so as I’m getting stronger in one area, I’m getting a little weaker in another, but all along. And I think a lot of your listeners can probably relate. I was just tired of going to doctor offices and having them tell me, what more I couldn’t do. So, as I got a little bit stronger and could get out more—my wife and I are newlyweds and it’s summer in Chicago, which is just a wonderful place to be and a wonderful time to be and there were concerts all the time and my hearing was at the point where I could just still barely listen to music. And I thought this is really important to me. I’ve never been somebody who closely identified to music. And I played the trombone in band. There were four trombone players, and I was always assigned the role of fifth trombone to give you an idea how musically inclined I was. But I looked ahead and thought, I’m accepting that I might not ever hear again. I don’t mean things are going to be quiet. I mean, I might not hear the sound of my own breath ever again. The concept of hearing might become a memory to me, not a sense and what do I want to hear? I wanted to be able to have a song in my head 20 years later when I walked my daughter down the aisle, I wanted to know when people sang happy birthday at my kids’ birthday parties. I wanted to be able to remember what that sounded like. So, I really invested a lot of time and energy into listening to music that meant a lot to me with intention. Bridge over Troubled Water makes me think of my mom, my dad, and I would listen to Bob Dylan on tape in his truck. In college I got introduced to the Beatles and so they were the last music that I remember hearing with my whole ear. And I was not self-aware enough at the time to think of it this way. But looking back, I was essentially creating a soundtrack for a life I wanted to live and a life that I hadn’t yet lived. So, music became very important to me in the face of deafness.

Daniel Levine: There may be some listeners trying to figure out how we’re having this conversation. Now you actually have an implant that looks much like a cochlear implant, but is different. This is a device that’s connected to your brain stem. What exactly is it and what does it do?

Matt Hay: So, it sounds like a joke, but it’s not, there’s never been a better time in history to be deaf. I mean, I’m having this conversation right now, over a computer. I have caption on my phone so what you’re saying is being printed out to me by artificial intelligence in real time and the sound that I process is coming directly to my brain. So that’s the device you mentioned. People are familiar with hearing aids and cochlear implants, but that still requires your brain processing sound that comes through your ears. Millions of years of evolution—your ears are pretty phenomenal on the way that they process sound waves. My ears don’t work at all. Well, I’ll take that back. My ears actually work perfectly until you get to the very last step. There’s nothing wrong with my ears, except the nerve that connects to my brain and those tumors are on that nerve. It’d be like going down a brand new, perfectly paved highway. The lines are painted yellow, everything’s clear, but the bridge at the end of the highway to get you to where you’re wanting to go, that bridge is washed out. My hearing nerve is my bridge and that’s washed out. So, a hearing aid wouldn’t help, a cochlear implant wouldn’t help. But the FDA had approved a compassionate care device called an auditory brain stem implant or an ABI. So, instead having something that goes through my ear or my cochlea, I have 12 electrodes sewn directly to my brain stem where some really intelligent surgeons at the House Ear Institute in LA said, we think that’s the part of your brain stem that processes sound. We’ve only done a few hundred of these in the world ever, but we think this is the only way you’re going to be able to process sound. So, I’ve spent the last 18 years trying to turn 12 electrodes into Paul McCartney singing “Let it Be,” and that has been a whole different kind of physical therapy.

Daniel Levine: How would you describe the experience of hearing with this device after having lived for 20 years with normal hearing?

Matt Hay: Well, with any kind of surgical procedure, there’s a responsibility of a healthcare provider to manage expectations of outcomes and mine did very well in saying, your ABI might not work at all. This is an art and science. If it does work, best case scenario, we’re talking about life noises, which means of oven timers and police sirens. Well, I had been deaf for half a year at that point. So the idea of hearing an oven timer meant way fewer burnt pieces. It meant being able to hear my own breath, even if it sounded like a gravel truck, because it turned it on and the day it turned on, it worked. But my wife saying, “Matt, can you hear me” sounded like a bottle cap in a garbage disposal and that’s because we were immediately asking my brain to do something no brain has ever evolved to do, which is hear sound without ears. And instead of having an infinite number of sound combinations, we’re going to give you 12 options. So, it’d be like, hey, we are going to paint the ceiling of the Sistine Chapel with three crayons from Applebee’s. You know, you can, you can add some color up there and you can make a picture, but it’s probably not going to look like something a master has done. And I went into it with that approach. After a couple of years, I got there, and to put a number to that, my sentence recognition—meaning somebody speaks and I don’t see them—I would get about 30 percent of what they said. And everybody said, that’s wonderful, what a great outcome. Thirty percent is hearing enough to get you in trouble.  Thirty percent in the end is enough that I can confirm that, yes, I’m ready to have my cavity filled, but I also didn’t realize I was confirming that I had been given my Novocain shot and I had not been given my Novocain shot. That was followed by my first lesson in self-advocacy of when you can’t hear, be really clear that you know what a doctor is asking you. I was not happy with 30 percent because really who would be? Around that time, my kids were born and they’re 16 now, but when the twins were born, I was really frustrated with how much work my disability was putting on my wife, because I couldn’t hear the kids or distinguish the kids. And I wanted to do better. And I didn’t know how to do better because there were so few people that had an implant. At this time, your only option was to go to Netscape Navigator and hope you’d get even a hit. So, I thought back to that music that I listened to and decided, well, I’m going to start listening to those songs again, because those are the last things that I remember hearing—and what has actually become an actual formal data backed, hearing, brain processing, auditory processing technique. It wasn’t at the time. It was just me trying to make things up as I was listening to those songs. I mean, I have a CD called songs we like for my wife and my wedding, and I listened to 12 songs over and over again for about two years. And one day we were driving down the street two years into doing that. And I picked up one line from one song and we pulled over and had,  get a little emotional thinking about it now, I heard music. I’m totally deaf and my ears don’t work at all. And my brain processed a song that we listened to at our wedding. And that was the carrot that I needed to start using music and the brain memory of that song. And so really instead of my ABI telling my brain how things sound, my brain was telling my ABI, “no, he’s saying mother Mary comes to me.” So, I would start listening to this music and hear lyrics that I hadn’t heard in nearly a decade.

Daniel Levine: What is it like to listen to music? Is it a pleasurable experience?

Matt Hay: It is different. I had a very Zen audiologist and I would say things just sound bad. He said, not bad, they’re just different. That’s an important distinction because if you go through life, if I go through my life now thinking that’s not what I expected, it’s bad. I’m never going to be happy with my hearing. But if I accept that this is what my wife sounds like now, this is what Paul McCartney and Paul Simon sound like now, there’s sort of a philosophical approach to that. I’ve worked very hard at adopting that. So when I hear U2, when I hear “With or Without You,” or I still haven’t found what I’m looking for, I hear that as a song now because my brain combines a little bit of what I’m hearing now with its own memory of the way that used to sound. And I never thought I would say this 18 years ago, but there are days that I absolutely forget that I’m deaf. I’m deaf in the same way that I’m lefthanded. Those are facts about me, but they’re not things that even would occur to me to share if I were meeting somebody at the grocery store.

Daniel Levine: You went to work for a company involved in improving the sound quality of hearing aids and this got you deeper into the audiology community and you learned about phoning training. Can you explain what this is and what that’s done for you?

Matt Hay: That’s great. I had the opportunity to help launch a really wonderful device that would remove moisture from hearing aids and implants, which is a leading cause for device malfunction. But part of that role in sales and marketing was for me to develop relationships with audiologists across the world. What accidentally happened is that I developed friendships with audiologists across the world and one of those was actually, from a sales call perspective, a total bust because at the end of our meeting she said, this isn’t what I do in audiology at all. It was a lesson for me in sales. So, be sure to ask more questions before you start talking. She said, “I actually work with auditory processing disorder,” and I had never heard of that. Her explanation to me was much in the same way that dyslexia is well known among people reading, but that really is just your eyes and your brain having a disconnect and your brain interpreting things your eyes see in kind of a mixed up fashion. So, the theory is the same thing can happen with hearing and that has really gotten a lot of acceptance in the hearing loss community, in the professional community over the last few years. An auditory processing disorder is now a known thing. That’s because we understand better that your brain is really what’s hearing. I mean, your ears don’t know anything. Your ears are just a conduit. So, she said, “I would like for you to be a guinea pig because you only hear with your brain.” And I told her, “I’m happy to do that if you introduce me to some of your colleagues, but I don’t think you’re going to help me because I’m already performing. I’m already exceeding some expectations with my implant and I’m on year 18. And nobody really improves after year 18, with an ABI, or really with a cochlear implant for that matter.” And she said, “that’s okay, let’s try.” And so, the training we did was unlike anything else I had done, where instead of just trying to pick up audio by osmosis, and then being more intentional in trying to pick up and process sound by listening to songs or lyrics. She broke it down even further and into what are called phonemes, which are just not even a word, but mah versus nah versus puh. And she would do this with her face covered and then we would connect those very individual sounds with a word. So, they would be a mah and then a picture of a mom. And I would point to mom and say, mah, and we were really reprogramming my brain. And that’s what we were doing. We were reprogramming, hey brain, this is the way, mah sounds, this is a word that has that in it. And we’re connecting all of those through that. My speech understanding is now in the low nineties. So I’m about triple where I was in terms of how much I can hear compared to where I was when people said, “holy cow, you hear really well.” I’m at a point where if you give me really good audio and a quiet room, I can use the telephone to talk to my mom, my dad, my wife, or somebody who I know.

Daniel Levine: When did you become involved in advocacy?

Matt Hay: Well, I didn’t realize it at the time, but through all of this I realized that I was very fortunate to have the means and the support to be able to go out and learn these things about the ABI and music therapy and auditory processing training. And I felt the responsibility to other people with hearing loss and to the NF communities, specifically to share some of what I had learned. And doing that, I started getting involved in more NF advocacy organizations. there was a little bit of selfishness to that because it gave me an opportunity to get to know some of the world’s leading NF physicians, neurosurgeons, audiologists, neurologists. And so, it made me feel like some of the struggles that I went through in my early twenties at a time when I had no one to ask for help, it made me feel like I was perhaps helping someone else that might be feeling that same way, and throwing someone else a life draft at a time when I didn’t have one. So, I started getting more and more involved as I went through this hearing therapy that became a form of advocacy as well as I started talking about that and sharing my experience. So, I became an accidental advocate was probably the best way to say that. I had a job that was very fulfilling from a head and pocketbook standpoint and the advocacy I did on nights and weekends was very fulfilling from a heart standpoint. It’s what I really loved and everything else I did is what gave me the means to be able to do that and volunteer for those organizations. So, I really spent 20 years focusing on advocacy without realizing—I don’t think I ever called it—that it just was me feeling like what I thought was the right thing to do and maybe a little bit what I had a responsibility to.

Daniel Levine: You now work in advocacy for Alexion, the pharmaceutical company. What led you to do that work?

Matt Hay: I love the word serendipity and this was definitely a case of serendipity where I mentioned I had been working in advocacy and working in medical sales and marketing in the hearing industry. Through my work with several of the NF advocacy organizations, I knew that there was a pipeline of different medications that I had helped to fundraise to support some of these. I knew that AstraZeneca had gotten an FDA approval for a medication that wasn’t applicable to me, but it was applicable to the NF community, which was a huge thing. This had never happened before. So, I was aware that there was an FDA approved medication out there. I was aware that AstraZeneca had acquired Alexion because of their rare disease expertise and that Alexion was going to roll out this medication. I was peripherally aware of that. I had a friend that worked at Alexion who said, “hey, they’re hiring and building their NF team. You should reach out to them.” He’s on the sales side and knew I was on the sales side. So, he introduced me to a gentleman who would eventually become their executive director of sales for NF. I wasn’t looking for a job. I wanted to meet the guy that was going to lead this effort because I care deeply about wanting to make sure that it was done in a way that had the NF community’s interests   being put first. I met with him and our 30 minute call lasted about close to two hours. The outcome of that call is I learned about the role. I had never met a sales leader quite like him. And I told him that and said, “I would love to work with you, but I don’t think that I can, because I’m not sure a sales role is where I can provide the most impact for the NF community. There are other people out there that are going to be much better at that than I am, but I would love to help in some way.” And he said, “I totally agree”. And I think he was actually relieved that I said that because he was probably thinking the exact same thing. He said we’ll stay in touch and I thought that would probably be the last I ever heard from him. Three weeks later, he reached back out and said, I want to introduce you to the head of our own advocacy team and I want you to talk to her about NF advocacy, and because maybe I’m a slow learner, it didn’t occur to me at any point in the process that they were considering me for that role. So, with a very non-interview attitude, I explained to them what they needed to look for and what I believed they needed to look for in this role, why it would be hard to fill, what would be wonderful about the job, and if somebody started here’s the people I think they need to meet first. Naively after two or three conversations about that, I was just happy to help. It wasn’t until HR got on a call where I thought, wait a minute, why is HR here, and ended up—you probably see where this is going. They ended up offering me that position and I was actually reluctant to take it only because I didn’t know, I wasn’t sure if advocacy was a real thing. I didn’t know the company. I was new to the pharmaceutical industry in general, and people love to use words like patient focused. Everybody claims to put the customer first. So, the patient first, but my experience in 20 years of sales is that’s always true until money gets involved. I was skeptical of pivoting my career. It did not take me long after meeting my colleagues on the advocacy team, my manager, her manager, the advocacy team that Alexion had built. It didn’t take me long to realize that not only were they not treating advocacy and that patient focus as a buzzword, but that was very much a foundational component to every decision they made.

Daniel Levine: Well, how would you describe what you do as a patient advocate working with an industry? What do you do for patients and how do you advocate for them within a company?

Matt Hay: Well, it’s funny you ask that because another reason why I was skeptical is when I asked the hiring manager the same question, she said, I’m not really sure how to answer that, every day’s different, which to me was kind of a red flag. She likes to joke with me now, “how would you describe a typical day, Matt, you’ve been doing this for a half a year and there isn’t a typical day.” And I’m going to give examples cause that would be a very generic answer. Part of it is making sure the voice of the NF community is heard and reflected in all of the decisions Alexion is making, that the NF team is making. It’s sort of mainly ensuring I’m representing the voice of the patient and caregiver internally, but also what I didn’t expect is I also get to be sort of the mouthpiece for the NF team within the patient community. It’s my responsibility to make sure the patient community understands decisions Alexion is making, what roles different people play within Alexion, and why that matters to them. So, my very first meeting with one of the larger patient advocacy groups that I had served on the board of directors for in years prior, I explained to him that I was really excited because I feel like I have an opportunity to be a megaphone for all of the things they’ve been trying to do. And he said, “well, that’s funny because before you walked in, I explained to my team that I see you as a megaphone as well.” I’m a megaphone for CTF and you felt like CTF could be a megaphone for Alexion, and the same thing happens with other advocacy groups. It’s a very long way of saying I try to make sure the right people are heard and that each decision we make is done with the patient in mind and in rare disease that is so unique because you can’t just go out and find somebody with NF. There’s a reason a lot of people haven’t heard of NF. It’s just not very common. And the people that have it sometimes are in very tough situations and they’re not out there able to advocate for themselves. So, it’s so important to develop a relationship with those advocacy groups because we need to represent one another’s best interests. And the only way we do that is by establishing a very authentic relationship built on trust, and that’s a very big part of what I do is making sure those relationships exist.

Daniel Levine: What’s been the biggest surprise from working within a drug company as a patient advocate?

Matt Hay: I think two things—one as a patient for the last 20 years, when you hear about clinical trials and then they stop at a certain stage. And as a patient, I was always frustrated. Why isn’t more happening, why isn’t it happening faster, Why do these things take so long? And now having been on the other side of it, you look around and I can’t believe how many incredibly intelligent, motivated, empathetic, talented people get up every day to do nothing except focus on moving medical science forward for NF. So, nobody wants it to happen faster than we do on this side. And I didn’t understand that as a patient. I didn’t think it through that far. And so, I’m very proud now to tell my friends and caregivers or patients in the community that we’ve got a really incredibly talented group of people focusing on this every single day. We’re making it happen as quickly as we can, but there are guard rails in place and every one of those guard rails is there to protect the patient. So, that’s one. The second is I did not realize just how many roles, or how many teams were in place just to support the patient. I came from a background where 90 percent of the company was sales. And I don’t even know the numbers to put a number on it, but we have so many, we are building teams every day and growing teams whose goal is to support the patient. And this isn’t a perfect analogy, but sometimes I feel like the patient education teams, the patient support teams, the people that are helping make sure you get the right information at the right time, the people are helping you with insurance, the people that are at advocacy events and conferences, their role is to be sort of a Sherpa, and rare disease isn’t so rare when it happens to you. When it happens to you, it’s a significant load and burden to carry. I never imagined how many people at least within Alexion exist just to help carry that load and say, “you might not be ready, but know that I am here when you need me to carry that for you.” It makes me feel so good about not just what I get to do, but how we do it and the people that I get to do it with because I’m super protective of the NF community. I mean, I’m part of the NF community, selfishly. I want to make sure everybody’s treating us above and beyond. There’s a lot of pride in being able to tell them that that’s the experience I’ve had so far.

Daniel Levine: Matt Hay, U.S. director of advocacy for NF1 for Alexion. Matt, thanks so much for your time today.

Matt Hay: Well, thank you very much, Dan.

 

Stay Connected

Sign up for updates straight to your inbox.

FacebookTwitterInstagramYoutube