It was surprising to me just how many there were and a lot of these families are just traveling around the country looking for some kind of hope because they know there's a timeline on this. They just don't know how long that is. So they're kind of just traveling around looking for what state is going to give them some kind of an opportunity. And when you look at again the timeline too, this was one of the other changes that we've made in the law was around remote appointments. So a lot of patients have told me that they spend their last few months just traveling around the country hoping that they might qualify for a treatment. They don't know that they'll qualify. They just show up in a state and meet with doctors and say, here's what I have, what I qualify for this treatment. And a lot of times the answer is no. So they spend a lot of time and a lot of money traveling around just to be told no. So with this legislation, it actually will allow patients to have that first appointment remote so they can join a Zoom call. Americans are capable of achieving extraordinary things when they have the freedom and opportunity to do so. This is American Potential. Hey everyone, and welcome to the American Potential Podcast. I'm your host David Fram. If someone is battling a rare life-threatening disease, you'd think getting any type of treatment. It would be simple, right? Unfortunately, it's not. Too many patients face roadblocks that really keep them from accessing certain options. But some states are changing that, removing barriers so people with terminal illnesses have options instead of nothing at all. Today, we're sharing the story of one state that passed a right to try bill. And this one hits even closer to home because a former lawmaker who helped make it happen is one of the very patients it was designed to help. I want to welcome Sarah Scott, who's Deputy State Director for Americans for Prosperity and Hampshire. And she's going to share this lawmaker's story and also what the bill will do. Sarah, thanks for joining us. Thanks so much for having me on. Thanks. So, Sarah listeners can get to know this lawmaker, Michael Yakuya Kubuvic. Shoot. Michael, a little better. Share his story and where he grew up. So, Michael is in longtime activists for the AFP and the Hampshire team. But he's originally from the Soviet Union. So his story started coming over to America many years ago, but his childhood was over in the Soviet Union. So he really had a lot of firsthand experience about what it means to live in a country that's not free. And so he brought that perspective here to New Hampshire. And we first met Michael. I think it's gosh probably back in 2018, 2019 now when Michael showed up at our Americans for Prosperity office during an activist training class we had. He walked in the door and said, you know, I care a lot about Liberty. I want to make sure that what I saw growing up never happens here. Teach me how to get involved. Wow. So firsthand experience of seeing what a top down authoritarian place looks like and he didn't want to see that replicated. It really gave him a lot of passion for wanting to get involved because he knew just how bad things could get if people didn't stand up and make a difference. So I've heard him talk a lot about his upbringing there and things that he's he's seen and really kind of focused on where we can avoid that slippery slope and making sure that that doesn't come to New Hampshire specifically. So him getting involved with American Prosperity and getting involved in politics eventually let him to run for state rep. What did you know what did that what did he do what did that look like and like what did he do while he was a state rep. So New Hampshire has an interesting setup because we've got 400 state representatives here. So when we ask our activists to get involved and take that next step, we're not asking them to just make an extra phone call. We're asking them to run for office and so that really looks a lot different. Our activists and legislators are really committed and they want to make a difference. Our legislators make $100 a year and they don't have any staff. So they really just are super activists. It's the people that care enough to get involved and want to take more action. So Michael came in and wanted to get involved as an activist. He didn't know anything about getting involved in New Hampshire politics. He never aspired to become a legislator. He came in the door and was like teach me how I can help. I want to make sure that America stays free specifically New Hampshire. And so he went through our activist training classes. He got to know a lot of other people in the AFP office. And we kind of became his his go to spot for a lot of things. And he met some other connections through AFP and Hampshire that helped him also to get involved. And so we hit a point where we're like you know what Michael we really need you to run for office. We need you to take the next step there. And so he signed up to run. And from there he got elected his first time running. He was elected as a state representative. And he really looked to AFP to be kind of that continuing ally for him. And he was one of our best. I would say he was the behind the scenes guy from the New Hampshire house. Sometimes legislators get elected and they want to be the one that's upfront giving all the speeches and doing the media interviews and things like that. Michael was really looking at behind the scenes on how we could make this work better and how he could bring more people into the fold. That's great. What are some things he did in order to do that? Was he a bit of an organizing influence? Yeah. So one of the cool things that Michael put together is something that we still do in the AFP office still today. So he realized that with 400 state representatives and no staff, those legislators were really honestly disorganized. There wasn't a lot of bringing everybody together and figuring out who's on what page and how can we all get united towards the same goals. So when it would come time for bill filing, we would never really know who was filing a bill. Did somebody already sign up for it? Did nobody sign up for it? And we just kind of were unclear on where we were going. So Michael came to us and suggested that we organize meetings in the office. And he was like, can I bring legislators in around each topic and we'll talk about what is good look like? Where are we going with this? And what kind of legislation do we need to push forward the next year? And who are the key players in that? So who's going to sponsor the legislation? Who needs research? And kind of getting everybody on the same page. So we started doing those meetings in our office. So we would bring folks in around an issue like healthcare policy and say, you know, this is what we think good looks like in terms of healthcare. And here's some of the research legislators would have a chance to ask for more information. We'd bring in other coalition partners and just get everybody on the same page. You know, you and I have worked together in New Hampshire for some time in fact, in the past. And I, I adored New Hampshire. It's just one of my favorite states. And I love kind of the odd really direct, you very democratic way that there's such a great history to it of democracy there. And so I love what he was doing is so necessary because it is, you know, it's 400 state reps making $100 a year. I mean, these people have jobs and lives and everything outside of it, but they're just doing it because it's the passion and the care. So I love that he was doing that. So my stage, then ran for state senate, right? And tell us what happened when he was running for states. You know, we asked people first, can you sign up to run for state representative? And they go, yeah, I guess I could do that. And then if they're really good at their jobs, we asked them to do even more. And we asked them to sign up to run for state senate. So unlike our house of representatives, our state senate is only 24 members. So very much smaller, but they still only make $100 a year. So running for state senate is tough because you, you don't have much staff. You don't have a lot of money to spend on this. And it's a larger district to run in. So for a long time, we really didn't have a consistent aligned group in the New Hampshire Senate. We would look at the House of Representatives and say, you know, we've got a lot of conservative values over there, a lot of aligned people, but we really didn't have that in the Senate. So we ended up encouraging Michael to run for state senate and through the encouragement of us and a lot of other people there, he decided to go sign up and run. And so he ran his state senate campaign and he ended up having a primary. It was definitely a tough primary battle. It was kind of, I would say like the establishment versus the liberty. And so there was a lot of excitement and momentum because we hadn't seen a primary like this as far back as I can remember, actually things don't turn over as much in the New Hampshire Senate as it does in the New Hampshire House. So we had definitely quite the primary experience there. It was a tough race. And Michael ended up beating his primary opponent, which was much the surprise. I think of a lot of folks watching this race. That's great. So, um, But he also, but I believe he got some bad news while he was running for Senate. Yes. So, uh, after the in Hampshire primary the next day was super exciting. Michael had won his race. We were all ecstatic about that. And then we got a call with the bad news that Michael actually wouldn't be able to continue running in the general election. So that was pretty shocking to all of us. He had gotten a diagnosis, a very terminal cancer diagnosis. And he wasn't going to be able to continue running for office. So to have gone through that race, the primary and have had such a hard fight, we had so many activists that were involved and excited about this. And then to hear that Michael wasn't going to be able to continue on. And we didn't know what was going to happen to him. Because at that point, I think a lot of us had heard that he had cancer, but they couldn't even figure out where the cancer was at that point. So it was definitely a shocking thing to hear. So he's encountered some obstacles trying to get treatment, right? What are some of those obstacles? So Michael's diagnosis was stage four cancer. And like I said at first, they didn't even know where it was. I couldn't even tell you how to pronounce the name of the cancer he has, but it's a bile duct cancer. And it's very aggressive. And I think the five year survival rate for this is about 5%. So when you get this diagnosis, they're kind of saying you don't have a lot of options. We're going to try our best to treat you, but it's it's an uphill battle for sure. So Michael started cancer treatments right after the primary and continued on with that. He's gone through round after round of chemo. And all of it's pretty much just a guess that like we don't know that this is going to help you at all, but here's the treatment that you have. And since then, I know that Michael has tried a lot of different experimental treatments and looked at other ways because 5% survival rate after 5 years is not exactly great odds. And so he's really been looking everywhere to kind of find the treatments that might actually help him. And that kind of led him to this legislation and the fight that we had in Hampshire over right to try. So we're going to be talking about what red to try is. So right to try is letting people try these experimental treatments if they're facing terminal diagnosis. So a lot of times people get that diagnosis. They say, we can't do anything for you. Good luck. And instead of saying that's where it ends, it's saying if there's a pathway forward that we're not telling you to cure, but there's a chance that maybe this could help you. We're going to let you go and try that. And so we passed right to try legislation in New Hampshire and at the federal level back. I think that was 2018 now. And we had a lot of excitement around that. We were really motivated and thought, man, you know, we fixed the problem. And then unfortunately we figured out since then is that we removed some of the barriers, but there were so many still in place that this legislation still wasn't actually helping patients. And so we realized that we needed to put together some legislation in New Hampshire is where we ran it this past year to make right to try legislation actually usable. So we made some changes at the state level to one, clarify the protections for doctors. So Michael told us a lot about the risks that doctors go through. He mean he talked about the nurses and doctors put on spacesuits every week to walk into his treatment because it's just it's a dangerous treatment. But they're willing to do that. But the problem with a lot of these experimental treatments is not so much that the doctors are not willing to take that risk because they're taking the rest is to go in and treat him insurance companies don't like that risk the insurance companies for the doctors. And so they're really concerned about civil liability issues. And so this legislation basically says that patients know what they're signing up for. They know you're not giving them a cure. This is just hope and it's giving you the chance that maybe there's a miracle. And so it waves that civil liability so patients can basically sign a waiver and say, I know this might not work. And then the doctors have that flexibility to actually go and treat the patient. So in essence is a right to try legislation really just allowing patients who are basically really dire prognosis to assume the responsibility in the consequences for these experimental or less tested treatments. Yeah. So basically they're just saying that we know that we're acknowledging this is not going to be 100% a cure. We just want the chance to try. And having that flexibility there, it just didn't exist in the original right to try legislation and was probably the biggest barrier and the biggest reason that we haven't seen significant usage of right to try since we initially passed it. This was the issue that came up time and time again. I even heard stories of doctors that understand this kind of treatment and one doctor in particular. I think her husband was sick and they were looking at how to get treatment and basically told like we do see an option. There is an experimental treatment. But there aren't any doctors that are actually able to take the risk to give you the treatment. So seeing the fact that there is hope and we're just putting these roadblocks in the way is just devastating to people. No, I mean, it just seemed to ask you so frustrating for that person or loved one. I mean, you know, if there's any hope you want to aggressively pursue it. Absolutely. And one of the other changes that I thought was really interesting that I didn't know about initially is that the original right to try legislation focused primarily around drugs and not just experimental treatments in general. So there's been a lot of advancements in technology with things like individualized gene therapies. And when you look at genetic diseases, there are just so many genetic diseases that don't have any treatments. I think if you look at rare disease in general, 80% of them are genetic in nature. And I think maybe only four or five percent of them have any kind of an approved treatment. And so FDA approval is a huge, huge cost for companies. It's very time consuming and it's very expensive. So if you have a disease that maybe affects 20 or 30 people oftentimes it doesn't end up going through that FDA approval process because it just wouldn't be profitable for a company. Right. And so this legislation lets you focus more on those individualized therapies too. So we heard a lot from families that have children with rare genetic diseases. So the kids are maybe like okay right now, but we know by the time they hit maybe eight or nine years old, it's going to be terminal for them. So it's kind of getting ahead of that and saying that we are going to be able to do these targeted individualized treatments with them that might might help them might make them live a little bit longer. It could even be a cure. We're not sure yet, but we're going to be able to test out and try. Wow. I mean, yeah, it takes one other level when you think about being your kid. I mean, I know that's the reality for a number of people. It was definitely. It was surprising to me just how many there were and a lot of these families are just traveling around the country looking for some kind of hope because they know there's a timeline on this. They just don't know how long that is. So they're kind of just traveling around looking for what state is going to give them some kind of an opportunity. Sure. And when you look at again the timeline too, this was one of the other changes that we've made in the law was around remote appointments. So a lot of patients has told me that they spend their last few months just traveling around the country, hoping that they might qualify for a treatment. They don't know that they'll qualify. They just show up in a state and meet with doctors and say, here's what I have what I qualify for this treatment. And a lot of times the answer is no. So they spend a lot of time and a lot of money traveling around just to be told now. So with this legislation, it actually will allow patients to have that first appointment remote so they can join a Zoom call, for example, just to not necessarily to get the treatment, but just to be told, yes, you qualify. I know you don't. Yeah, that's not the way I would think you want to. Well, I mean, you got to rage against this, right? If you really want to try whatever you possibly could, I know one of my kids is doing it. Yeah, we travel all around to find whatever hope we could. So when this bill was, it was past this year, what in the lead up, what were some concerns that lawmakers had about it? So I think really a lot of the concern was about if this was necessary, because we had heard a lot about right to try legislation and everybody kind of thought we passed it. We're all set. Why do we need to keep working on it? What's the goal of this? And we really had to go through and explain to people that we did pass legislation, but it didn't work. We removed a couple of the barriers, but there were still some huge roadblocks in the way that meant that patients weren't getting treatment. So it was a lot about issue education and making sure people understood the importance of it too. And so at one point, we hit some kinds of disagreements over how do we define terminal, for example, and there were a lot of questions over just terminal mean they have to, you know, it would be terminal in six months. Does it mean it would be terminal by some point in the future? So we defined that and there were a lot of conversations with legislators and you know, a lot of times when things get complicated, legislators say, why don't we just sit on it and we'll come back to it next year, we'll figure it out. And the thing about this bill though is you couldn't put it off another year because that could be the matter of life or death for a lot of people. So there was a lot of pressure on legislators to say, no, we can't, we can't just put this aside and work on it for a year. We have to fix this today because a lot of the people that this bill is trying to help won't be here next year if we don't pass this today. So there was definitely a lot of debate over that definitely some high tensions because you know, it's a very emotional issue and so many of these legislators had a connection to Michael. And so they didn't want to push this out any further. And there was definitely one of the higher emotion bills, I would say it wasn't as controversial as it was emotional people really were motivated and passionate about passing this. Yeah, you know, legislators passed consequential legislation all the time that really affects people's lives, but this is truly a life and death issue in the immediate thing. And then when you double down at that, you know, a lot of more friends of Michael's and colleagues that it really does take on a lot of meaning. Yeah, that proximity. It really is just different. I mean, we can say, you know, we're going to wait another year to figure out a tax policy. Tax policy is not going to be a matter of life or death for people if we push it off another year or if you're looking at something, you know, dealing with energy costs. Another year isn't going to be that big of a deal, but an issue like this, this is everything. And so there was just a lot of pressure, I think, on people to figure out how could we come to some kind of an agreement. And I'll be honest too, like they took a lot of expertise. There were not a lot of people there well versed in this topic. Sometimes when you deal with like the New Hampshire House, they don't have staff that can do all the research. So they're relying on their own research. And, you know, this is a part time job, I guess I would say for them doesn't pay great, but it is a part time job. And so they're trying to do their own research and they're really relying on people to share those experiences. So I think this was really where Michael made the biggest difference because he could give them that firsthand education experience of this is what I'm dealing with. This is how the system works right now. You know, if you want to make this kind of a change to the bill, this is what the repercussions would be here. And really kind of helped walk everybody through what what does this look like in reality? Yeah. Well, what else can we do when it comes to right just right? So there are still a lot of things that I think we're figuring out need to happen. One of those does I think go back to the definition of terminal. There are a lot of diseases we know that are continuing, they're going to continue to get worse over someone's life. A lot of chronic illness, for example. And so I think one of the things we could do there is continue to expand that. So if there are people that are facing a disease where they're going to continue to decline over years, you know, let's get them help now. Let's not wait until they're terminal. Yeah. Let's try to expand on that now. And I think New Hampshire is really set up in an interesting position because we're right next door to Boston. And Boston is one of the biotech centers of the world really. We have such great medical care there. And we have a lot of people that want to experiment and figure out, you know, I think we can save patient lives. And so I think we've been talking more and more to some of these companies that are looking to come in to figure out what are those other barriers still. And that definition definitely does seem to be one of them that we can still work on here. One of the others is looking at actual treatment centers, getting treatment centers set up here so that you can continue to innovate within those centers also. I believe this next year, our legislators just were filing bills on this a couple weeks ago. And I think we've got three or four bills in this next session that are going to continue to try to expand on these efforts already, which is funny because two years ago, nobody was talking about this issue in New Hampshire. It was just totally off everybody's radar. And now that we've had this fight last year, everybody is coming to the table with this with their own ideas for how they think we can improve things. We've had a lot of businesses come up to the state to talk through, you know, what their issues are still. What kind of barriers are in their way. So I'm really excited to start hearing the conversations on it next year. And I'm pretty optimistic that we're going to continue to make some changes on this because this bill is definitely seen just a lot of support across the board. That's fabulous. So how's Michael doing now? So Michael is he's incredible really. He's been going and throughout the whole fight last year, he was testifying on these bills. There was one day that I had listened to his testimony and he explained that he had just had a pretty invasive surgery a couple weeks prior. I think it was and he still showed up and was testifying there anyways. And he's been continuing to fight alongside all of us on this issue. And he unfortunately missed the bill signing for it. He was getting some treatments there at the time, but he's still around. He's coming to our events every time we have an event. I'm always shocked at the fact that he is still consistently shown up. So right now he is going down to New York pretty frequently to get treatments. There's still not really a, you know, this is what we can do and this will be the cure. There's still it's a lot of waiting to see. There's a lot of, you know, try traveling over to a state here for a trial. Does that work? Things like that. I would say the thing I'm really most impressed with Michael on is the fact that he is pushing through all of this and is just so dedicated to this throughout the right to try. He didn't really look at this as a bill for himself. He was like, you know, I'm already traveling down to New York. I'm getting what kind of the experimental treatments they can give me through trials. And he was like, this is for the people that don't have what I do because he talked a lot about the support of his family, for example, his kids aren't little anymore. His kids are a little bit older. So, you know, he doesn't have a two three four year old at home that can't miss out on having their dad around. And then there's also just a huge cost. So there are a lot of patients that don't live anywhere near medical treatment. They we live right next to Boston. So it's really world class treatment there. Totally. So you talked a lot about the fact that he saw this as fighting for the people that didn't have the options that he did. And so that was definitely really inspiring to see he's still fighting. It's definitely an uphill battle for sure. But I've been really encouraged to see how well he's done. Yeah, what an inspiration. I mean, you know, we talk about people who took a step to get involved and then end up changing their state, change the world, change their nation, their community. This is a great example of that, you know, that through his efforts and you know, those of his that he that and that what he touched off amongst his college, you know, hopefully many more lives could be saved that wouldn't otherwise be so it's a real inspiration and it's a great story. I'm glad sir that you can tell Michael story here. And I really will give Michael the credit for this bill. I mean, he was the one that was looking up definitions of how can we find compromise between this legislator and that legislator on how we define something. And at the end of the day, he was the one that ended up giving everybody a definition that they could agree on, which the definition of terminal, which is funny that we have to even argue over this kind of a definition, but he was the one that was able to come up with something that everybody could agree on and it was information that none of us would have had. It was stuff that he knew from his own experience and he was dedicated enough to fighting for this that he went on and talked to the right people and got everybody on board. That's great. Well, thank you to you and your team for partnering with Michael and thanks again for telling us the story and sharing it with us. I hope I hope it's Michael just keeps keeps up the fight and we have a great outcome. He loves telling the story to everybody. So I think he'll be really excited to hear that we've been able to talk about it and I really appreciate having me on. Yeah, thanks, Sarah. Always a pleasure. Thanks. Thanks. Hey folks, if you like this episode and would like to stay connected with the podcast, be sure to like and subscribe to our channel as well. As well as following us on Facebook, Instagram and YouTube. But always remember, freedom and liberty are easily taken granted. Don't take it for granted. Go out there and defend freedom and liberty. Thanks for joining us and we'll see you on the next episode. Thank you for listening to American Potential. You may listen to more stories from Americans working every day to expand freedom and opportunity in their communities by visiting American Potential.com.
