Building The Noise with Erin Frey: EPISODE 014

SPEAKER_04 0:00

We call it death by zip code. So basically wherever you're born, um, the state next door to you might screen for a condition that your child has, but your child won't be found if if the condition is not on the list in your state. Can you imagine realizing that if I would have had my child in a different state, my child would be alive?

SPEAKER_00 0:18

Yeah. That I I like that is not okay.

SPEAKER_04 0:21

No, it's really heartbreaking.

SPEAKER_00 0:24

Welcome to the Building the Noise Podcast.

SPEAKER_01 0:27

Ladies and gentlemen, welcome to Building the Noise with me, Matt Teresco. Joining me today is Aaron Fry, a patient advocate focused on the state level policy issues that impact patients all over this country. And unfortunately, Aaron, I'm sure you would agree, growing uh as these years seem to tick on under the current administration, more and more issues impacting patients. But your focus is on ensuring that parents to be and those in the rare disease community have as much information as possible early on uh in that child's life. So thank you for the work that you're doing, and thanks for joining us today.

SPEAKER_04 1:03

Absolutely. My pleasure. Every day's a day to save babies.

SPEAKER_01 1:08

There you go. I love that terminology when we first met and you had that same comment. I could not agree. My mother was a labor and delivery nurse, um, and she used to talk about the joy of her job bringing babies into this world. So, yes, saving babies, even more important job.

unknown 1:23

Yes.

SPEAKER_01 1:24

So, if for our audience who might not be aware of the policy initiatives and the policy work that takes place at a pharma or biotech organization, tell us what your typical day or month might be like. Because obviously, I know that things in the policy space don't move all that fast as much as we like them to. Um but you know, I think a lot of people have questions about how we change healthcare policy.

SPEAKER_04 1:52

Yeah, absolutely. Well, and the term it takes a village, or we hear about tribes and coalitions, things like that. I think that's the most important element. One never does this work alone. Um, so as I'm talking about what I'm doing, there's always a big we in that world. And throughout my career, I decided that working at the state level on policy is really the most fulfilling because it does move faster, say, than at the federal level. And usually it's how states, you know, states passing bills, it sort of builds a tipping point, if you will, a lot of times. So federal policy tends to come from states. So when we're thinking about newborn screening, which is the topic that um you were alluding to about informing parents and making sure that they've got early information. Um that's kind of been my professional and personal passion over the last 10 years. I do want to set it in a couch, though, where when you're advocating on behalf of rare diseases in the rare disease community, you're dealing with a lot of different types of issues. I think this year I'm tracking on the state level maybe about 400 bills in the state. So I've got to watch all of those things in the background and make sure that the rare families, you know, there've been some examples where state legislation is actually helping rare families, like will Medicaid out of state coverage if you have a rare disease or an orphan disease diagnosis, for example. Um, there's a lot of things going on in this space, but I do tend to focus on newborn screening and kind of lead in that space. Um, and so yeah.

SPEAKER_01 3:42

Is that the acronym RUSP? What does that stand for? Um just so that we're all on the same page.

SPEAKER_04 3:48

Yeah, so the RUSP stands for the recommended uniform screening panel. So a little 101 on newborn screening. First of all, the value of newborn screening is that every baby in the United States gets their little heel pricked and a few drops of blood go onto a card, and that card gets sent to every state's newborn screening lab. Just about every state has one. If they don't have one in their own state, they'll use another state's lab. So every baby goes through this process. And there is a list of conditions in each and every state that they screen for. And most, if not all, of the conditions on that panel are rare diseases. Rare diseases that if you find them early, namely when the baby's born, then there's something you can do for the baby, an activation, a therapeutic intervention, a treatment is available. So we know that if we find you, we can treat you. We being the collective newborn screening system or you know, all of that, the medical system and all of that. So who decides what conditions are on that list in the state? And that's where the RUSP comes in. So at the federal level, there used to be a federal committee of appointed individuals from different walks of life, different functions, different representations of federal government that all got together quarterly to review conditions that had been nominated because they met several criteria that that committee set. And if those criteria are actually met and the review is deemed, yes, this is a good condition to nominate to the list. We'll go forth with it. It's a very, very, very long process. This is something that could take three to five years. Very, very long. You've got to get data, you have to prove it works, you have to have a newborn screening test. There's a lot of things that go into that. So it's not just a simple nominate and three months later everything's good.

SPEAKER_00 6:00

Yeah.

SPEAKER_04 6:00

So once that federal review committee decides, yes, we recommend this condition to be screened for in the state public health system. The reason it's so arduous is because public health means every baby is tested. So we've got to approach it with a very big sense of responsibility, right? If we're making everybody do this, then we better learn, well, know what we're doing, right? Doctors better better be ready to treat these kids. Yeah. So that federal list is called the RUSP, the recommended uniform screening panel. And the states use that list to decide which conditions are we going to screen for in the state. So once it's approved at the federal level, then every state has to also go through their state review process in order to get it added to that list. That tends to take another five years after the RESP approves it.

SPEAKER_02 6:59

Wow.

SPEAKER_04 6:59

So we're talking this whole thing is triggered by usually an FDA approval on a treatment. So you've got FDA approval trigger pull, right? Yeah. Federal process, three to five years, state process three to five years. This means people are waiting ten years from the time a treatment is approved for the optimal way to find these babies early enough to treat them so that their health outcomes are the best that they can possibly be. Wow.

SPEAKER_01 7:35

Again, because of the bureaucracy of it? Is it is that is that normal if we think about other countries and the way that they may do it elsewhere?

SPEAKER_04 7:44

That's what's kind of crazy. I think other countries are even-I don't mean to sound accusatory, slower, worse, you know, those kinds of things. It's really hard because you have to be careful when you're dealing with a mandated program, which is what we have in the US, there is a very high level of responsibility. That said, if it's just me talking here, and I think I can say so on behalf of so many rare families that I've met, everything that we ever think about, everything we put our effort into, every waking moment is about time.

SPEAKER_00 8:18

Yeah.

SPEAKER_04 8:19

And every single minute matters to a rare family who has one of these babies that are suffering from one of these diseases. And that's bad enough. And then you realize there's so many rare diseases, on the order of 10,000 rare diseases, only 5% of them have treatments at all, and only some percentage of those are actually amenable to newborn screening. Sometimes you have to do genetic testing. You can't find them in newborn screening.

SPEAKER_02 8:46

Sure.

SPEAKER_04 8:46

So we're talking about like a sliver of the rare community. But when you're thinking about time and it's your family and your child, or you know, one out of every 10 people lives with a rare disease, and that's around the world. So in the US, that's about 300,000 kids every, you know, every year have are living with a rare disease.

SPEAKER_03 9:10

Sure.

SPEAKER_04 9:11

So it's it goes from, oh, this doesn't touch me very much because it's rare, to oh, this probably not only touches me somewhere in my family, but my friends, my acquaintances, my people I go to church with, people I just know in my life. And um, when we go around, little vignette here, when we go around to state legislatures and we're trying to talk about this and how to make this whole process work better and faster, um, inevitably we find um what I call rare champions, right? They're the ones that say to me, I know somebody who has this disease or that disease. And then I say to them, Okay, well, it sounds to me like you would like to be a rare champion, meaning if we find a kid in your state and we need some help, I gotta phone a friend, you know, I've got somebody and just help to see if we can move a mountain for that kid. But I digress. That's a little bit further down the road, I think. But yeah, yeah, the whole concept of newborn screening, because it's at the federal and state level, it is bureaucracy, but it also is responsibility. And I think that some some balance there is warranted. Um, I always say I'm working to make this go faster, but it will never be fast.

SPEAKER_01 10:26

Sure. Yeah. What's interesting about newborn screening, I think the, if I'm not mistaken, the poster child, so to speak, for that is Cyprus from my genomics days, in which they had so many individuals being born with, if I'm not mistaken, it was beta thalassemia or alpha thal. Okay. Um that they were running out of blood in their blood banks. Oh my gosh. So they implemented um not just newborn screening, but uh ultimately almost like the Hasidic population of the Jewish uh uh sex uh doing it at marriage to ensure that knowledge was there. And it went from something around 83% of people in Cyprus being carriers of Alpha Thal and many of them having children with it, uh, to somewhere below 1% in two generations.

SPEAKER_04 11:25

Yeah, I mean that to me is like right now they'd only do newborn screening for conditions that have a treatment so that you have something to do if you find the baby. But I always think about, and many, I know many families do, right? Like newborn screening has broader implications. If you find a baby that has a condition, now mom can get tested, dad can get get tested, grandparents can tested, they can family plan for other kids if they want to have in the future. There's so many heart-wrenching situations where a family has two kids, let's say within two years, and kid number one, the symptoms show up when they're two or three years old, but they've already got that second child.

SPEAKER_00 12:03

Yeah.

SPEAKER_04 12:04

And now they know that the second child has the disease. They had to find it out the hard way with the first one. They have to wait for symptoms to appear. And by that time, it's usually too late. You know, you can't move time backwards, right?

SPEAKER_00 12:17

Yeah.

SPEAKER_04 12:18

So then what happens with these families is the first child grows up and is, you know, they've got their health outcome or their progressive disease that maybe it got treated at some point, it slows down, but they've already progressed to a certain point of you know, disease progression. Yeah. If not really normal, depending on the treatment and how early and all of that. And so these families, this the things we can learn from siblings, from you know, the broader family, like if I just I always think about those things. There are things that I have no control over, right? Which is a lot of the ethics of the program, but I still think about them and it's and I listen to the families. And yeah, a lot of what guides my drive, I guess, like to keep going, in spite of the fact that it takes so long, it's slog sometimes. It's I I just get from the families when I'm listening to what they're going through. I've realized a lot of times, Matt, I'll like I'll have an idea in my mind of what I think ought to be done in a state. And then I just find myself, I'm gonna pivot, right? I'm gonna, I'm gonna change over. Like I might start with a bill in a state that is just trying to say, add this condition to your list, right? A two-sentence bill that says, just do this, you know, for any particular condition. And then I'm talking to families, and I'm talking to families with other diseases and, you know, other people that have thought about it more broadly. And quickly it evolves to wait, we need a systems change in the newborn screening program. And that is kind of what happened to me over the last 10 years. I started to this and I realized like there are some themes of problematic arenas that are coming up. Like as I talk to all the different stakeholders from all around the newborn screening world, including the people who are doing the screening in the states, and they say to me, We don't have enough staff, we don't have enough money, we don't have enough equipment, and the state won't give us any more money. So I want to do this, right? Our hearts are in the right place. The pet parents and families are getting mad at the state, mad at the lab because they won't do it. But you dig deeper and you find out what's the root cause, right? Like what's the reason why, and how can you solve that?

SPEAKER_01 14:49

Sure. And so So you end up not, you know, not just adding, you know, uh rare diseases to the panel, but you're helping them run their program.

SPEAKER_04 15:00

I'm helping them by listening to them and and supporting them.

SPEAKER_01 15:04

Yeah.

SPEAKER_04 15:04

If what I'm trying to change is feeling defensive, namely public health labs, then they're not gonna see me as somebody that they want to be dealing with and they're gonna be an adversary when I try to pass a bill.

SPEAKER_00 15:19

Yep.

SPEAKER_04 15:20

And again, every time I say I, there's a we up there.

SPEAKER_00 15:23

Yep. Yeah.

SPEAKER_04 15:24

So I want, I've always wanted to make sure that whoever my bill or our bill is gonna impact, that they understand the intention behind it and help me figure out what is the best way to approach. Because if I'm actually causing a problem by passing the bill that I'm passing, when I could have actually provided a systems change that was helpful, then I've missed an opportunity and I've made an enemy. And there's no reason to do that if you can just have a conversation. So many departments of health, when I approach them at first, I can feel them defending the existing program because that's their job, right? They represent, we're doing well for the state of whatever.

SPEAKER_01 16:08

Don't call our baby ugly, so to speak. Sorry for lack of better terminology.

SPEAKER_04 16:12

And I've literally gone to such lengths as I've gone to like a couple of governors that I know better and say to them, look, I can work with your Department of Health, I know them, but I think they're feeling like they need to, you know, be a cheerleader for the program. Can we talk about how you could help enable them to be to see us as a solution provider, right? Or a solution negotiator that I'm helping them by listening to them about what they need so that no matter where they are now, they can improve. Everything that we ever do, again, it's time, right? So if it takes 10 years and I can make it nine, that's improvement. That's progress. If it's five years to add in the state and we can make it three, that's improvement, that's progress. By the time I'm dead, maybe we'll have it that it can go super fast.

SPEAKER_01 17:03

Yeah. Well, no, but you bring up a really good point though. I mean, when you're dealing with any organization, but truly when you're dealing with a state or federal program, especially in the current administration, the current climate, um, everyone's worried about their job.

SPEAKER_02 17:19

Yeah.

SPEAKER_01 17:19

So if you're gonna come in and say, hey, we can make your program better, they might hear, as you said, your program's poor.

SPEAKER_04 17:27

Right. That's right.

SPEAKER_01 17:28

And now you're putting my job at risk by saying my program is poor.

SPEAKER_04 17:33

Right.

SPEAKER_01 17:34

Right. Um but I liked, you know, uh one of the things that we had talked about in our last call was this this notion that you have the uh recommended universal, right? Those two words, recommended universal screening program. But not every state runs exactly the same program, correct?

SPEAKER_04 17:55

Right, that is correct. We call it death by zip code. So basically, wherever you're born, um, the state next door to you might screen for a condition that your child has, but your child won't be found if if the condition is not on the list in your state. Can you imagine realizing that if I would have had my child in a different state, my child would be alive? Yeah, that I I like that worked is not okay. That's no, it's really heartbreaking.

SPEAKER_01 18:20

I I worked with um a parent, uh two parents, honestly. Um, their child had spinal muscular atrophy, and that hit them like a truck, as you might imagine. Um and then in another case, uh, it was fragile X, but it was only recognized in the first child after they had their second and once that was yeah, once that was identified, they were able to go back and actually reclassify grandpa's ataxia and tremor as fragile X associated ataxia and tremor, not Parkinson's.

SPEAKER_04 18:57

Yeah, oh, okay, yeah.

SPEAKER_01 18:58

Yeah. Yeah.

SPEAKER_04 18:59

I mean, the natural history of a disease, you've got to capture that. That actually helps with research and development. So those family, those family tree things can be contributing to that too.

SPEAKER_00 19:11

Yeah.

SPEAKER_04 19:11

We can't know how to fix it unless what goes wrong when it naturally um progresses.

SPEAKER_01 19:16

So it's it's interesting. You're bringing up a lot of terminology. You know, we we call the show Building the Noise. Um, and you know, I know that you and your work are doing a lot of the same as as a group and building coalitions to build the noise. Uh, but if I'm not mistaken, you had also shared that you were in a band. How does how how do you see forming a band and the different components of a band like doing big A advocacy, as we call it, on the policy side?

SPEAKER_04 19:47

Thank you for giving me a slot to talk about what I woke up thinking about this morning when I would thought about doing this podcast. So, yeah, I used to be in rock and roll bands since I was 17, and um, gosh, for probably 30 years or more, I sang in bands. And the analogy that came to my mind was you know, you're talking about building the noise. So in a band, I'm a I was a singer, and so I could sing, I could sing a cappella, I could sing in my car, I could sing in the shower all by myself, right? But yeah, building any noise, it's just me. I'm all alone. It might be beautiful, but it's it's not gonna, you know, impact anybody or change anything, right?

SPEAKER_01 20:24

Not gonna hear it, you know, three blocks over.

SPEAKER_04 20:26

Yeah. So then as you add pieces to your band, the guitar player, a pianist, a drummer, right? Maybe a couple horns, uh percussionist, right?

SPEAKER_03 20:37

Yeah.

SPEAKER_04 20:38

I could play a mean tambourine back in the day. When you get all of this stuff going, then you are building noise. And then as the singer, and this analogy leads to like if I'm building a coalition, I'm kind of the singer in the band, right? Like I'm the one sort of reaching out, interviewing folks, pulling people in, building the group. And um little by little by little, I ri I realize over time that I can kind of let go because now you all are together and everything is going well. And we obviously work together to to do a thing, right? Pass a bill or or make a change of some way. But um yeah, so building the noise. It and the other thing that happens is they start to know each other, right? So, like the folks in Oklahoma might start to know the folks in Colorado, and it just it really starts to expand.

SPEAKER_01 21:31

Yeah. I've noticed that recently with um there's an organization I worked with, HPIC, um, focused on the the state really prescription drug advisory boards at this point. And it's just interesting to watch these disparate individuals in different states all coming together and getting really close, right? But you they might be in Colorado and other folks are in Florida and others are in New Jersey, but they know each other really, really well because they're there for each other and they know what the fights are all about.

SPEAKER_04 22:00

Yep. Well, and they recognize that they're not alone. I mean, especially in the rare world. Like if if you think of the the community of your own kids' disease, for example, or your own disease if it's you, that's so, so, so small that around the world there might only be a few people, you know, a few thousand people, maybe even a few hundred people.

SPEAKER_00 22:18

Yeah.

SPEAKER_04 22:19

If you realize the rare community in my general vicinity, then you've got a bigger, a bigger tribe, if you will.

unknown 22:26

Yeah.

SPEAKER_04 22:26

One thing I've noticed, Matt, and you and I were talking about it a little bit earlier. Um, over the years, I've realized, at least in the rare disease world, like there started to become this um, there was so much focus on federal level types of things. And I get it, right? Because at the federal level, if you pass a bill, it impacts, you know, the whole United States.

SPEAKER_02 22:47

Yep.

SPEAKER_04 22:48

But it just takes a really, really, really long time. And sometimes, you know, and I think a lot of the time, that tipping point, I think I said earlier, comes when you build up a number of states that have passed the state version of the bill and then it moves over. What I started to realize is when I was going into states, like for example, I was going into Tennessee and I was trying to pass a newborn screening bill. And long story short, it took me like two years to get to gather the people together, build the trust with the Department of Health, you know, all the things.

SPEAKER_03 23:19

Yeah.

SPEAKER_04 23:19

And I realized, like, my gosh, like that. I wish that could happen faster because then we could, you know, here again, time, right? Like, yeah. I'm only one person. I can't be in every single state in the nation.

SPEAKER_01 23:32

But if I've got or logging 400 bills.

SPEAKER_04 23:36

Yeah, exactly. I've got to figure out how to how to gain scope without still being only just me, you know. So uh a friend of mine um came up with an idea that has resulted for State Zebra Network.

SPEAKER_00 23:54

Yeah.

SPEAKER_04 23:55

And it just started up two years ago. And um, anybody who's listening and cares about rare, like I definitely invite you to take a look at their website. I think it's state zebra network.com. So zebra is what we use in rare disease. Doctors are told if you hear hoof beats, assume it's a horse because it's probably not going to be a zebra. Yep. Well, in rare, it is a zebra.

SPEAKER_00 24:18

That's right.

SPEAKER_04 24:18

That picture right there is two zebras, if you can see back there.

SPEAKER_00 24:22

Yep.

SPEAKER_04 24:22

Um, so State Zebra Network has it's basically a coalition of coalitions with the idea that um I they might kill me for saying this. I look at it speed dating. So industry industry government affairs professionals can sort of submit their ideas or their priorities, and then all of their patient advocacy members from around the country also do the same. And when there's a match and topic, we're kind of we're invited to, you know, communicate directly with each other.

SPEAKER_01 24:56

That's awesome.

SPEAKER_04 24:57

Isn't it? So that's one way that industry and patient advocacy connects authentically, right? Like we're not telling them what to think. They're not telling us what to think. We're you know, independently saying we're both thinking about the same thing. So why don't we get together and you know do it do it together because more, you know, yeah, we'll go further, so to speak. Yeah. So then the other thing that has happened from that is that um states have figured out that, you know, here's several groups became a member of State Zebra Network or several individuals. And oh, these three live in Oklahoma, or these five live in Utah or wherever. And so they've helped them start to think about themselves as a state rare coalition. So like Oklahoma Rare or um Alabama Rare was one of the first, and uh, the leader of Alabama Rare is actually involved with State Zebra Network as well, as are many others. I mean, it's a wonderful group that has just that's fantastic. Yeah. So as government affairs professionals, especially those of us for rare disease companies, there's usually we're there's not a lot of us, right? So yeah, I find myself one of the most heart-wrenching things that happens to me is which it's not about me, but whatever. I have to go into one state, do a thing, and then I've got to leave because I've got to go into another state and do a thing.

SPEAKER_00 26:18

Yep.

SPEAKER_04 26:19

So I have felt like I can't, if I come in and build that coalition and then I abandon it, ah, that doesn't sit well. You know, I can try and stay in touch and things, but it it's really, really difficult to do.

SPEAKER_02 26:31

Yeah.

SPEAKER_04 26:31

So with State Zebra Network helping to sort of formulate all of these different groups, it can stay and they can do the things that are their priorities, whether or not I'm there, or someone from another company, or someone from the Every Life Foundation, or someone from the National Organization of Rare Diseases, right? Plugging the names of the nationally scoped organizations that generally do great work at the federal level, but they've got bandwidth issues too. So how can they be, you know, how can they expand their state presence through these groups? And it just really is working.

SPEAKER_01 27:06

I mean, I I that's a fantastic opportunity for everyone uh that's listening that is on the industry side. Tell your tell your policy partners about it if you don't find yourself doing policy. Um and at the same time for all of the nonprofits uh that are listening, get you get involved.

SPEAKER_04 27:24

Yes, absolutely. You have an opportunity. Yes, they can Seed Zebra Network can help with a lot of the administrative functionalities too. Like, how do I get a 501? What how can I bill track? You know, all these different things. So yeah.

SPEAKER_01 27:38

I'm gonna have to check that out myself as I build a 501c3, and I'm trying to figure that out as as we build, you know, build the plane while we're flying it.

SPEAKER_03 27:46

Yep, that's right.

SPEAKER_01 27:48

That's right. Um, you know, my big question here, and you keyed in a little bit, you know, you're obviously you're doing state policy work for industry. How did you find that niche? How did you get into it?

SPEAKER_04 28:02

Oh, I tripped and fell and I took a nosedive off of a cliff and landed really, really, really well. Um, I started out my career in executive search, believe it or not, at the Sears Tower. I won't, I won't go into super big details from the 1990s, but um, 1900s.

SPEAKER_00 28:22

Come on, not 90s, no.

SPEAKER_04 28:25

So 9-11 happened, and um I wanted to get out of the Sears Tower, which was you know supposedly going to be the Chicago skyline, yeah. Yeah, that's where I lived back then, obviously. And I in executive search, you're placing vice presidents and CEOs into their positions. And so I called up one of the guys. This is my first foray into networking was through that executive search stuff. So I called up the CEO of one of the guys that I placed in a hospital that was near me, and I said, Hey, I got you a job. Can you get me a job? And lo and behold, he did. And um, that's how I got into that networking at its best. Yeah, yes, exactly. Community relations, government affairs work was my first foray into it. And it was for a hospital system. And um, he kind of gave me a lot of rope because it was a new position, and I got to kind of play and figure out what I wanted to do. I got to also figure out how a bill becomes a law and what's my role in that. And why is it?

SPEAKER_01 29:26

Is it bad that schoolhouse rock is coming to mind?

SPEAKER_04 29:29

Yeah, no, because that's exactly what's not at all bad at all. Okay. So yeah, then from there I just went, you know, to different groups and different companies and landed in pharma in 2011, about 10 years later. I've been in pharma since then, but I got into rare disease about 10 years ago. And so this one, this one feels like, oh, it's got me in the heart, it's got me in the head. Um, the people are absolutely worth fighting for. And I I'll well up a little bit when I say this. I wake up every day thinking about how can I fight for them? How can I save time? How can I shave off minutes from the moment, you know, that a treatment is approved to the moment the has access to it, or from the moment that baby is born until you find that diagnosis so you can get that treatment as early as possible, all of that stuff. But it's yeah, fighting for that is worth doing.

SPEAKER_01 30:27

And and it doesn't feel like work when you're when you have that big of a mission. And you know, what we've what we have found here at Arco is that it's often difficult sometimes for C-suite leaders to recognize the value of policy and advocacy.

SPEAKER_03 30:41

Yep.

SPEAKER_01 30:42

Because, you know, you're looking at quarterly and annual balance sheets and and wondering, well, how is this going to help now? And exactly as you said, if you're not doing that work to help those patients get a diagnosis earlier, um, if you're not uh from an advocacy perspective, helping the community to know what's there and what's available to them, but also then uh on the state side, helping those patients locally and in their state to rally around legislation, you're never going to impact the bottom line.

SPEAKER_04 31:13

Yeah. And the way it usually works for me is I kind of start with a thing, I call it a possibilities conversation with like a state person, right? I just get like I think of it as opening a door a little bit. Like, hey, I'm thinking about this. What are you thinking about? And okay, what if we built it like this? And here's a menu of things that we can think about together. So I do the the upfront, right? Like I try to figure out I'm not lazy. I'm gonna think about what are all the possibilities I can think of, but I'm not done then. Like I nothing happens without a conversation. Like you cannot, if you're not talking about it, it ain't never gonna happen. Like you have to have conversations and you have to have wrong ideas or ideas that don't work, you know, in order so that you can finally hit on the one that really takes off. And when you when you are doing that with people who are living it, with doctors who are treating it, with um hospitals who are, you know, they have a stake in the game, right? Like everybody that's involved, every time that kind of stuff comes together, and I realize like that that guy that first hired me into government affairs um is still to this day a mentor of mine. And he asked me, I'm sorry, this is a little bit circuitous, but I'm gonna get there. So he asked me, What is your purpose in life? And I answered immediately, and he said, Whatever you're telling me immediately is not it. Like you need to go and think on it, and you need to think on it hard, and you need to really, really dig down deep. And so I came to him with probably four or five different iterations that he would turn me away and say, Nope, that's not it. He wasn't telling me I was right or wrong. Yeah, he was telling me go deeper. And no matter what I would have said, even if I hit it on the first try, he would have said, go deeper, just keep thinking, right? Because we stop thinking so fast all the time. Finally, I landed on I bring other people's good ideas to life. And so what I know is I need to start the idea, I need to be the ember, and then other people fan the flame, and then they figure out what they want to do, and then I help them do it. I bring them connections, I catalyze other people's involvement, I own language, I play the bad guy if somebody needs me to, right? Like whatever they need, and and and then they also in turn say to me, whatever you need. And it becomes this very wonderful symbiotic situation where honestly, even if I do mess up, I say the wrong thing, or I make an assumption that was incorrect, or any of the number of things that people can stumble over. Yeah, there can be an honest conversation about look, you went too far there, or this isn't what I meant, or um, hey, the Department of Health said they liked this, but now they don't. And so what are we gonna do? We have to pivot and I can think together with them. And it's that stuff is where it's really at. I don't care what you're advocat advocating for, nothing happens without a conversation, possibilities, conversations. You aren't the boss of anything, right? Like you've gotta just stimulate the conversation. So all of this to go back to bringing other people's good ideas to life, like that's how it happens for me in my brain now, right? Like after all of these years, all of my stumblings, all of my imperfections, all of my You're constantly listening. Constantly listening because it's never about me.

SPEAKER_00 34:58

Yeah.

SPEAKER_04 34:59

You know, it's always about who's who am I protecting, who am I who are you serving to build a path for? Yeah. And that guy from my first government affairs role gave me that.

SPEAKER_01 35:12

That's an unbelievable gift to be given. And one of the questions I always like to ask is what's been the best piece of advice you've ever been given? And that sounds like that is the best. And I would say that you've given everyone here on the you know, listening a gift to do that thought process for themselves. Because once you're in alignment with that and you know what your calling is and what your mission is, everything just feels so much easier.

SPEAKER_04 35:40

Yeah.

SPEAKER_01 35:40

It's not easy.

SPEAKER_04 35:42

You know how when you have a conversation with someone and you feel chafed or you feel like, oh, you know, that kind of hurt my feelings, or yeah, whatever. It's almost like and or you feel angry.

SPEAKER_00 35:52

Yeah.

SPEAKER_04 35:53

You talk with a legislator who just blows you off or something and you just feel mad.

SPEAKER_00 35:57

Yep.

SPEAKER_04 35:58

Like all of those things I realize once to your point, like once you know it's a calling, it's like, okay, well, um, I can handle that. Yeah. Water around rocks, you're not gonna stop. Right. Yeah. I'm gonna keep going. And if it isn't me, I'm gonna tell somebody else to go, you know, to come in from a like a flanking position. Yeah, it's like you know, to come in from another angle.

SPEAKER_01 36:22

You can tell me to go pound sand, but I'm gonna send seven, eight more people in from different angles.

SPEAKER_04 36:27

Yes. So that it's yeah, you can say goodbye to me, but that doesn't mean I'm gone.

SPEAKER_01 36:32

That's right. I love that because that persistence, that grit is what we've always seen to be and and truly that foundation of the relationship that you're discussing as well. Yeah. As where folks always stand out in advocacy and policy. You know, it doesn't matter. I've been doing this research for 12 years, and year after year after year, the top people that we hear about, it's never this person got me this grant or this person um was able to come through on this funding opportunity. It was always I can call this person whenever I need to. Yep. I know that they're gonna answer, and I know that they're gonna listen. And if they don't have an answer for me now, they're gonna go and find one.

SPEAKER_04 37:17

That's right. That's right. Absolutely. I'll show up, I'll be there. And if I can't, I'll bring someone else into the mix, right? Like I'm never gonna let it go. It's I don't know. I want to use a religious word, right? It's a blessing. It is a blessing, and I I just feel like if I'm made to do this, then I'm going to always honor the people that I'm doing it for.

SPEAKER_02 37:40

That's right.

SPEAKER_04 37:41

And I think so many times when you're talking about like it's just a check, right? It's money, it's funding, yes, that's helpful stuff, but that's not that's not that's not the value. That's not what changes lives, right? Like it's it keeps the doors open. But it's just not the only thing. Yeah, it keeps the doors open.

SPEAKER_01 37:59

It keeps the doors open, but it allows those conversations that you're talking about, those pivotal idea generation discussions. It allows those to keep happening. And that's that's where the magic is.

SPEAKER_03 38:11

Absolutely.

SPEAKER_01 38:12

When you remove all barriers and say what would be the best thing for this patient population.

SPEAKER_04 38:18

Yes. And there again, is listening, right? So um I can tell a story about this. So the um the American Cancer Society is doing a great thing called biomarker's testing coverage. This is another issue, and I'll be brief about it. But no, please. Georgia was passing the bill, and I read the bill because it popped up in my bill tracking because it was biomarker and right. So I'm reading that bill and I'm like, oh, it doesn't have anything to do with us. It's just about arthritis and cancer and immunology.

SPEAKER_00 38:49

Yep.

SPEAKER_04 38:50

Wait a minute. If it's about all of these different kinds of disease states, why couldn't rare be one of those disease states?

SPEAKER_01 38:56

Yeah.

SPEAKER_04 38:57

So I talked to my boss about it. She was like, Yeah, I think it's, you know.

SPEAKER_01 39:01

Why not rare?

SPEAKER_04 39:02

Then I had to talk to my molecular diagnostics people to see, am I crazy or do we a type of testing that can identify rare conditions? Like, I just want to make sure I got my T's crossed here. Yeah. When I got that, yes, I called the policy leader of um ACS of American Cancer Society, Cancer Action Network, and we started a conversation about it. Before I knew, here comes the industry association saying, Yeah, we'll support it. The national rare organizations, yeah, we'll support it. And little by little by little, rare diseases is now listed as one of the conditions in all of their work. And really, so that's a way like one little person, right? Yeah, just asked a question and figured out, oh, like here's another pathway to an earlier diagnosis. That's right.

SPEAKER_01 39:52

If it's not newborn screening, it could be any kind of biomarker testing, which is urine, blood, genetics, like so yeah, and as you and I both know, more information allows us to have more information for for a lot of things, right? And you know, in my genomics days, the dirty word was variants of uncertain significance. Yeah, yeah. Right. And whenever I would ask a geneticist or a genetic counselor, how do we get rid of those or how do we take that percent down? Well, you need more data to know if there's a certainty to that significance or not.

SPEAKER_04 40:28

Yeah, exactly. Is more than one person coming up with the same thing and having the same phenotypic bodily symptom and outcome.

SPEAKER_00 40:36

Yep.

SPEAKER_04 40:37

Yeah, there's I mean, and there's more of that coming. I mean, data from newborn screening, it's going to evolve to include genomic newborn screening, which means like right now in every state, to circle back to newborn screening, there's maybe 40 conditions are on the RUSP, and maybe you know 30 to 40 in each state. And um that's it, which is not a lot compared to 10,000. So when you pull in, so there's newborn screening and then there's genetic testing. Yeah, not not every condition can be found through newborn screening. It's got to be found in your blood, right? So when you pull in genetic screening, now that can be scalable. Like hundreds, if not thousands, of diseases can be screened and with the same, you know, blood sample.

SPEAKER_01 41:23

The same panel. Yeah, same. Yeah.

SPEAKER_04 41:25

But then you have a whole boatload of information, and it wouldn't be the same panel, it'd be a much bigger panel. It'd be, you know, hundreds of hundreds or thousands of diseases instead of just 30 or 40. So, but the states are necessarily worried about that. So, how do we do it? Well, you know, there's all kinds of pilot programs going around about genomic newborn screening. So any of you out there interested in newborn screening legislative or advocacy efforts, just please know in bills, it'll show up separately, right? There's the public health traditional newborn screening, and then there's the genomic newborn screening, newborn screening, which is that broader data set. Um it will never only be genomic newborn screening, right? Like you still have to um, like you were saying, there's fusses, there's genes that may or may not manifest into disease. So you still have to figure out a way to understand, okay, if I've identified a baby through genetic testing, then how can I be sure that this baby needs treatment now? Or how can I know when treatment should be offered, right? So you still need the mechanism of the traditional newborn screening to figure out that part.

SPEAKER_01 42:40

Yeah, if you will. It's a great point. And I think one of the big I know one of the big blockers, for example, in um in Alzheimer's research and biomarkers there is fear of discrimination.

SPEAKER_03 42:54

Yeah.

SPEAKER_01 42:55

So how do you tackle genomics, you know, let's call it genomic newborn screening and the implications of that data on life insurance.

SPEAKER_04 43:06

Yep. There's a lot of state bills I've noticed this year in the element of, you know, keep your eyes open for what else is going on. I've noticed a lot of other bills this year. I believe that every life is running that chart running that effort in the states, actually, um, or at least tracking it at this point. Um, I think they are leading on it though. Um, but it's to ensure that any anything found through genetic testing of any kind or you know, just anything like that, not only genetic testing, anything found is not is not allowed to, you're not allowed to discriminate against them in the realm of health insurance.

SPEAKER_03 43:42

So health insurance.

SPEAKER_04 43:44

And then life insurance is the is another piece of it too. Yeah. There's definitely an effort going on about that, but um to our earlier point about like it passing in states first until the tipping point goes to the feds, I'm not sure if there's a federal effort on that front too. I think there may be.

SPEAKER_01 44:01

I don't know what I'm saying. Well, I think as you said, it's gotta st it's gotta start at the state level, first and foremost. I mean, even if we go back to ACA, that started with states running similar programs, and Massachusetts was was the the poster child, right? Um and and yes, it believe me, we all know it's it's got its warts, it's it's got its issues. Um but I was just speaking with someone on the right side of the aisle yesterday who was talking about the need to take all children and put them on a state type Medicaid program.

SPEAKER_03 44:35

Oh well.

SPEAKER_01 44:36

Yes and the uh the amount of savings that that would be able to pass on to employers, but also the mindset risk, you know, the the the fear that all parents have of what happens if that's my kid, yeah, and how do I afford treatments or whatever it might be? Right, now you can remove that from a parent as well, yeah, knowing that that you know, for the first 18 years of their life and in this person's mind it includes prenatal care as well. Yeah, we ensure that the future of our country is healthy.

SPEAKER_04 45:08

Wow. I love that idea. Yeah, I thought that I mean that down.

SPEAKER_01 45:12

And and and honestly, you know, I find myself having more and more of these types of conversations about what could be.

SPEAKER_03 45:19

Yes.

SPEAKER_01 45:20

And if it could be, how do we get there?

SPEAKER_04 45:23

Yes. And you and that's where the as you said, that's where the magic is. Yes, having the conversation because if you never have the conversation, it'll never happen. I like that you brought up that it was a right-wing person because that reminds me that I guess the other thing, one of the great learnings that I've had too throughout my career is that you cannot ever assume what a party is gonna think about a thing.

SPEAKER_02 45:46

Sure.

SPEAKER_04 45:46

Um, I have been so surprised so many times, whether it's a Democrat supporting something that I thought they wouldn't, or a Republican not supporting something that I thought they would, right? Like either all the permutations and combinations of what I thought, yes, it's never accurate. So I always feel like that that surprise is the thing that gets me through the periods of time when something falters because of political backlash. Yeah. So there's a great disappointment when a bill doesn't pass just because somebody's mad at the bill sponsor.

SPEAKER_01 46:26

Sure.

SPEAKER_04 46:27

Which happens all the time.

SPEAKER_01 46:28

All the time. All the time.

SPEAKER_04 46:32

I'm not gonna do what she wants to do because she is this, you know. And that happens, and we have to live with that. But on the other side of that coin, you can also be pleasantly surprised when you find somebody's gonna make a move or be supportive when you never thought they would be.

SPEAKER_01 46:49

And it's amazing, you bring that up, and I'm finding this every day where I speak with people who don't think anything can get done because of the administration that we have.

SPEAKER_02 46:59

Yep.

SPEAKER_01 47:00

Right? And then things happen. Yep. Oh. Or, you know, new funding pathways, for example, I know in the rare disease space opportunities through the Department of War. Wow. Because of the evaluation of biomarkers that are necessary for um our warfighters and uh assessing threats and you know, all of these like biochemical weapons things.

SPEAKER_04 47:26

Exactly.

SPEAKER_01 47:27

Exactly. That there is there's opportunities for those that have um registries in the rare disease space to look at funding opportunities and even B Corp opportunities um by you know the research that they're doing. It's a completely new way of thinking about you know rare disease advocacy and these typical 501c3s that maybe there's an opportunity to actually begin some of the uh manufacturing if someone wants to, um, that it doesn't just have to stay academic in nature, it can actually proceed further.

SPEAKER_04 48:05

Yes. Oh my gosh, absolutely. That's so interesting. The Department of War is doing that.

SPEAKER_01 48:11

Yeah. Um it's coming.

SPEAKER_04 48:13

I think that what you just said too about research, you know, there's this thing called the Valley of Death for rare treatments that when the science is building up in an academic setting, and then it's gotta cross the valley of death in order to get into a company that's gonna build. And so there's I don't know as much about that as I probably should or what have you, because you know, all rare treatments, like gosh, we need it, we need them, you know. And investment is investment is struggling in rare diseases because of uncertainty, blah, blah, blah. Like there's all kinds of ripple effects around. But at the end of the day, it's also true that rare disease is trending, right? It's up and there's more more rare treatments than there's ever been before. And so, you know, and I think that'll keep going up because we I think we're at what 3,000 at this point? 3,000 treatments?

SPEAKER_01 49:03

Well, 3,000 diseases that have rare diseases that have a treatment out of the 10,000.

SPEAKER_04 49:09

That would, I'm not sure. That would be a good number. That would be better than I thought it would it was.

SPEAKER_01 49:14

So we just went from 7,000 to 10,000 rare diseases not too long ago, right? Yes.

SPEAKER_04 49:19

So the buses have been figured out.

SPEAKER_01 49:22

More information, better information. We're able to figure out these once unknown pathways. And I would say a lot of your work, as you've referenced, is about time, but man, we think about the rare disease patients' average time to diagnosis. Yes. What is that nowadays? Do you know the numbers?

SPEAKER_04 49:40

I think it's five, seven years. I think it's seven. Yeah. Okay.

SPEAKER_01 49:43

So it's not changed much in 20 years. Um, that it's still about seven years to figure out what's wrong if you have a rare disease.

SPEAKER_04 49:53

Yes.

SPEAKER_01 49:54

And that there, that there gives you valley of death, valley of despair.

SPEAKER_04 49:59

Yes, exactly. And and that right there is is so every time I talk with the legislator about rare diseases, newborn screening treatments, right? There's always, well, how's how is anybody gonna pay for it? Right. So you have to have the head con the heart conversation, which is, you know, this disease is terrible, and you know, here's why you should care about this.

SPEAKER_00 50:19

Yeah.

SPEAKER_04 50:19

And then there's the head part of the conversation that has to come into play too, because you've got to arm your legislators and your advocates with both sides of that conversation. And when the funding part is a huge part of the head, the head part of this conversation. And the when we think about how, you know, what does it cost? You know, there's a spectrum, right? What does it cost to not have life? That's the worst cost that you've paid because the patient dies young, which is the most awful. But how do you monetize that? A lot of people don't even want to. They can get to the place that says we don't want that, yeah. But then from there, it becomes how much have we spent on caring for this child that didn't have a treatment for this rare disease?

SPEAKER_00 51:09

Yep.

SPEAKER_04 51:09

And then once we have a rare disease, how do we compare that to understand, okay, even if we're paying on the order of a couple million dollars for a gene therapy, the most innovative treatments out there right now, how does that make sense from a value proposition? And the answer is because you're going to spend way more than that if you don't give the person the gene therapy. However, thus far, it's hard to do that math because the gene therapies are so new that we don't know how long the people are going to be living on it. We don't know the duration of the therapy. Are they going to need a second shot in 20 years or not? You know, there's so many questions still. But the general math, if you could use some variables instead of actual numbers, I find usually at least hits the cord of common sense with legislators. Like it makes sense for someone to have a better life, a better health outcome if they're treated early.

SPEAKER_00 52:07

Yep.

SPEAKER_04 52:08

And so if it costs a little more to get that earlier diagnosis, I can commonsensically see how that makes sense. And then likewise to pay for the treatment if we find a baby that has the problem. But you know, some people will use that as an excuse to not do it. Yeah. Right. Okay, well, if you can't tell me how to pay for it, I'm gonna dismiss you. So guess what I do then? I go on to the next legislator.

SPEAKER_01 52:34

Hey, you're not stopping. You are not gonna stop. Yeah. But you know, you bring up a really good point. I mean, if you look at Zelgenzma, right, which was for spinal muscular atrophy, I'm pretty sure if I'm not mistaken, that was the first uh gene therapy that came out.

SPEAKER_04 52:49

One of the at least, yeah.

SPEAKER_01 52:51

Yeah, and that was the first time we ever saw ICER tell them to do a price increase. Right. Right. Yeah. But brought into that account, as you referenced, was the life of the patient, the the expense of care for that patient that was gonna die early.

SPEAKER_02 53:08

Yep.

SPEAKER_01 53:08

Um, the impact on mom and dad, because in that in those families, typically both need to be uh home for round the clock care for that child, right?

SPEAKER_04 53:17

So which is a state economic problem because now the people are paying income tax for the state.

SPEAKER_01 53:23

Exactly. So all of that gets factored in, and it went from, I think, if I'm not mistaken, the numbers were like 1.2 million to 2.3 million is where they recommended it. That's the that's the increase that Icer, who's you know, very cleanly historically going the opposite direction on costs that they would recommend? Yes. Um it's been interesting to see, and honestly, you're you're brilliant at what you do, and the way that you go about doing it and developing those deep relationships, more so understanding that you are that ember that can bring ideas to life if you hear them. At what point in your life did you have this pivot that you recognized there's something else that I meant to do? Where was that life pivot for you? Because I know in your story you started off a lot different than most people might know.

SPEAKER_04 54:16

Yes, yes, yes. I was a I was a teenage mom who made good. Um, yeah, I think that the pivot for me, so okay, I should say more words about that. I was 19 years old when um my first giant whopping quote unquote failure happened, and that was that I was pregnant.

SPEAKER_01 54:36

Sure. And um a failure by any means, a 34-year-old man at this point.

SPEAKER_04 54:42

That's exactly right. So yeah, he's 34 years old now. But when I was 19, you know, it was, you know, it's it felt like a failure.

SPEAKER_01 54:51

Sure.

SPEAKER_04 54:51

And he and I have had this conversation, so it's okay, no worries, no worries to anybody.

SPEAKER_01 54:56

No surprises, okay, no surprises here.

SPEAKER_04 54:58

No surprises. But obviously, that turned out to be one of the greatest things in my life. And then it led me to understand that I need to finish my college degree, I need to get a good job because I was single and I need to pay for this child's life, and I need to not be a failure, right? So it was like the driving force that got me up into work and up into college. I paid my own way through college, got through all of the things. And fundamentally, that job that I told you about that the guy mentor, you know, the the hospital system, yeah. He knew that I was a teenage mother, and as it turned out, his daughter became a teenage mother. And one of the reasons that he hired me was to prove to his own 10 years younger daughter that life isn't over just because you have a child and at a young age. And so all of the things in your life come together, right? Your personal life, your professional life kind of meld together for some reason. To me, that's like that means that's where you put your foot down next.

SPEAKER_02 56:10

Yeah.

SPEAKER_04 56:10

Right? You've got to go down that road. And that's the way my whole career has been. It's it's kind of it's almost like whenever I realize that something bad is happening to me, something I'm suffering, I have learned over the years to realize that that failure or that suffering, absolutely on the other side of it, something good is gonna come from it. Like how I got into the rare disease world was I got let go from where at the pharma company where I worked.

SPEAKER_03 56:43

Yeah.

SPEAKER_04 56:44

And that was devastating, right? I I didn't know what I was gonna do. And then little by little I I built a career back. I started at a startup company here in North Carolina where I live, and then went to a patient advocacy group from that that was involved with rare disease, and then at the biotech that I work for that is rare disease. None of that would have ever happened to me.

SPEAKER_02 57:07

That's right.

SPEAKER_04 57:08

This bad layoff not occurred. And I was mad, I was upset, I was hurt. Yeah, that happened. And it just, you gotta figure out that on the other side is something better. I know I'm not so Pollyanna to say that that's not all I know that that's not always the case, right? People suffer. Yeah, and I just I can't say what I just said about keep going without acknowledging that sometimes people just suffer and they suffer for a really long time. I would also say that most rare families that I've met don't live in that suffering. I read a book by Lisa Brackville called I'm looking for it over here. It's called Even So Joy. And it was her story as a mom of um having her her daughter Victoria and her she called it even so joy. And that the number of families that's whose children pass away while a treatment is getting developed and things, we call them warriors. I I cherish those families and and cherished their sacrifice.

SPEAKER_00 58:14

Yeah.

SPEAKER_04 58:15

And so yeah, I just want to balance that that Pollyanna, like, it'll be fine with like I get it, that sometimes things are just really hard and you gotta sit down for them.

SPEAKER_01 58:25

But even as you said, yes, you have to give your space that you have to give yourself that space to mourn. Yes. Um but even as you've referenced these these families that are facing, let's call I'm gonna call it what it is, the worst possible circumstances imaginable to have to watch your child suffer. Even they have, and I've met many of them myself, find the good in this world and the joy of in life. Again, I don't know how. I don't know how how I would do it. Um but you and I have both had our struggles. We've both had um plenty of pain in this life. And I completely agree with you. I mean, the the the phrase that I live my life on is the the all of the shit that you've gone through in life prepares you for the person that you once were. It prepares you to help that person.

SPEAKER_03 59:22

Oh, nice, right? Oh, I love that. Yes.

SPEAKER_01 59:26

Your mess your mess becomes your message.

SPEAKER_03 59:31

Yes, I love that. That's exactly right.

SPEAKER_01 59:34

You're able to live out and and show your son what's what's still possible. You're able to to show um your mentor's daughter what's possible, and yeah, it sucks in the moment, and it sucked for me for 18 years. Um but I wouldn't change any of it.

SPEAKER_04 59:53

Yeah, yeah, exactly. You know, exactly.

SPEAKER_01 59:57

And and you have to have you have to have faith and belief that it's gonna work out because it it does.

SPEAKER_04 1:00:03

You do, you really do. And you have to you have to realize too that um I'm thinking about how you turn a wish into being, right? And it's a lot of people, for example, like they have ideas or they have wishes or they have wants, right? Or whatever. And then what always has amazed me or baffled me, I guess, is we've touched on a lot of these themes throughout this, but like how does it actually get done, right? Like how yeah, you have an idea, like how does it actually get done? And it's easy to sit around and say, well, have a conversation and you know, all this stuff. But it it is real work, right? Like implementation is real work, and it is a grind, and it is like you have to build out a strategy and you have to write it down and you have to hone it, and you have to actually make a strategic plan that involves not only your brain, but many other brains, so that everybody is going on the same direction. And then you have to figure out the the I mean, the actual implementation plan. I've heard so many people talk about goals. And I'm just like, yes, I get it, but it's it's gotta go beyond that exercise and really into a tactical where do we start? What do we do first? Who do we engage? How do we engage them? Right. And really, really, I've make in my mind like these bullseye things, right? It's almost like as you're starting an idea, you have to start at the bullseye. You have to get that, you've got to find the catalyst, right? What's gonna make it explode? And then from there you build out, you know, your your collection. Anyway, I don't want to get too much into those weeds, but it's but the point is there are weeds.

SPEAKER_02 1:01:53

Yes.

SPEAKER_04 1:01:54

You do have to go through them in order to pass a bill. You have to write the bill. Find the statute in the in the computer, and you have to cheat language is a finicky thing, right? Yes, and you have to get that language approved by everyone that's involved in your thing, and you have to, you know, work out any differences, and then you have to get the legislator to actually buy into it, right? There are steps of any process that I often I don't know, maybe it makes me an old lady, but I kind of think to myself, like, gosh, with so much focus on entrepreneurship and everything, and I love that. And it is yes, you also have to have the doers.

SPEAKER_00 1:02:32

Yes, the doers.

SPEAKER_01 1:02:34

And you know, this starting a small business, you know, it it sounds it the creativity that comes from it's fantastic, it's a great exercise. But on a, you know, when it's Thursday night and payroll was due yesterday, and you know, you can do of all the creativity you want, somebody's gotta do it.

SPEAKER_04 1:02:53

Look, I still collect business cards. You can't see them over here. I have a stack of business. I still collect them. I it's a weird thing. And I, on the day when I'm just like aggravated or I'm spent or I'm burnt out, I will spend a couple of hours manually entering them into my contact list. I still do it, it's ridiculous because there's so many scanners and all the things with your phones.

SPEAKER_01 1:03:20

I was gonna say there's an app for that.

SPEAKER_04 1:03:22

But it's like a therapeutic, I don't have to think for a few minutes.

SPEAKER_01 1:03:26

I will say I do the same thing.

SPEAKER_04 1:03:28

I also have realized that my brain feels like it's literally moving at the end of my workday. My literally, I've had physical feelings in my head, like electrical this. And my dad recently moved in with my husband and I, and I was telling him about this last night, and he's he's like, Well, what do you do to get rid of that? And I said, I I talk to you, dad. You know, I cook dinner, I do something that I don't have to think about like really complex hard things or make a hundred thousand decisions in a day. I just follow the rules on the blue apron page.

SPEAKER_01 1:04:03

And I that was I will say, those are cathartic.

SPEAKER_04 1:04:07

Well, and I just I don't want folks to believe, right? Like life still is going on, right? Like you have to take care of yourself too. And these little things, like I remember thinking when I was young, there was a lobbyist that we had hired who was really, really, really important and really fancy. And I remember thinking, I bet she doesn't do her own laundry. And there's a part of me that no matter what happens to me, I want people to know I still do my own laundry. Like this is this is still real life while you're doing this big strategic and implementation of massively life-changing things, right?

SPEAKER_01 1:04:41

Like you still gotta and the weight, the heaviness of the environment that you're in, but you're still doing those little things, still preparing dinner, still manually inserting the contacts into your phone of the business cards you have. Yes, yes, yes, yes. I love that.

SPEAKER_04 1:04:58

When I'm gone, they're gonna find a big like bag full of business cards that I still have. I've been collecting them since 20, oh, since 1996.

SPEAKER_01 1:05:08

That's see, my wife actually still has binders of business cards because she would put them in the slots and like these aren't trading cards. No, you know, but to her, it was organized, and that organization was you know feeding into the next thing, and then and that was her process. Yeah, right. And from what I've learned from you, it's also it's important to have your process and stick to that, right? So it's sitting down and having deep conversations of the possibilities and where where could this go? But then you're always going wider of what else and who else can be involved and who else needs to be involved. Um because as you referenced, sometimes you have to pivot. And sometimes that politician is no longer the one that's gonna get it across the goal line, you have to bring somebody else in. Um and that's that's what I've taken from you is just because you found an answer doesn't mean it's the answer.

SPEAKER_04 1:06:08

Right.

SPEAKER_01 1:06:10

You know. My last my last question for you. If you could go back to that 19-year-old, what would you tell her?

SPEAKER_04 1:06:23

The first thing that popped into my head is, and I promise you this wasn't a pre-planned question, you guys. Nope. It was don't worry. The first thing that popped into my head was don't worry. Now if I thought about it for another second, it would be like you, you know. The idea is like you don't have to be so hard on yourself.

SPEAKER_03 1:06:47

Yeah.

SPEAKER_04 1:06:48

You know, I think we're all so hard on ourselves, like especially when we're young, right? Just we're still learning, we're just beating ourselves up about the head and shoulders, trying to act like we're okay out in the world.

SPEAKER_02 1:07:01

Yes.

SPEAKER_04 1:07:02

And I think that I don't necessarily I wouldn't change anything, right? I just think that if I could have known back then, if I could have had confidence that I would be all right, that Tyler would be all right, that I didn't have to worry, and that um it would be okay. Like I think I would have been freed up to do, I don't know, different things, more better.

SPEAKER_00 1:07:30

I don't know.

SPEAKER_04 1:07:31

Or or see, there's a thing, I wouldn't want to change it. I just want to change my state of mind. You know, a calmer state of mind, less, less sleepless, less worried, more present. Yeah, more present.

SPEAKER_01 1:07:45

Yeah. Not dropping them. I completely understand that because I think back on those 18 years and I don't remember them much.

SPEAKER_03 1:07:53

Yeah.

SPEAKER_01 1:07:54

You know, and that was, I mean, ultimately, my that was my kids from zero to eight, eight and nine. And I I don't remember those years, and part of me beats myself up for not remembering them, and the other part of me is going, well, that was survival, so makes sense, you know. Um, but I love that. That you know, know that it's gonna be okay.

SPEAKER_04 1:08:15

Yeah.

SPEAKER_01 1:08:16

Have faith in it that something good is gonna come out of all this.

SPEAKER_04 1:08:21

That's better. Faith in yourself, faith in your family, faith in your friends, faith in your abilities, faith, like just have faith. Have faith in God, have faith in all things. Yes, it's it it does. If you if you do have faith, then it'll be there. And if you don't, then it won't. Like it, you just you're kind of creating your own destiny.

SPEAKER_00 1:08:42

Yes.

SPEAKER_04 1:08:42

But it was the struggles that that helped out too.

SPEAKER_01 1:08:46

So yes, yeah. Yep. Hey, as I uh have heard it put, pick up your cross or one will be dropped on you.

SPEAKER_04 1:08:54

Yeah, there you go.

SPEAKER_01 1:08:56

Right.

SPEAKER_04 1:08:56

And it's been so fun, it's been really enjoyable. Thank you.

SPEAKER_01 1:09:01

I really appreciate this conversation. I love you're you're a true coalition builder in every sense of the word. May that be of ideas, of people, of of environments. Like I can just get a sense from you that this is exactly what you're built for, and and you're leaning into it and making amazing things happen. So thank you for all the work that you do on behalf of patients and families every day. And I will be sure that we also link to um the State Zebra Network uh for StateZebra Network.com in the show notes uh when this gets posted online as well.

SPEAKER_04 1:09:38

Wonderful. Great.

SPEAKER_01 1:09:40

Thank you so much, Aaron, for your time. Have a wonderful rest of your week.

SPEAKER_04 1:09:44

Thank you. You too, Matt.

SPEAKER_01 1:09:45

Thanks.

SPEAKER_04 1:09:46

Bye, everybody.