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A
Welcome back, friends, to another episode of the Juice Box Podcast. Well, everybody, we're going to jump right in. I'm back with Alison Smart. She was in episode 1652 called Save Lever. It actually was out in October of 2025. And she's back with us today to give us an update about what's happening and where are you right now. If you'd like to hear about diabetes management in easy to take in bits, check out the Small Sips. That's the series on the Juice Box Podcast that listeners are talking about like it's a cheat code. These are perfect little bursts of clarity. One person said, I finally understood things I've heard a hundred times. Short, simple, and somehow exactly what I needed. People say Small Sips feels like someone pulling up a chair, sliding a cup across the table and, and giving you one clean idea at a time. Nothing overwhelming, no fire hose of information. Just steady, helpful nudges that actually stick. People listen in their car, on walks, or while they're actually bolusing anytime that they need a quick shot of perspective. And the reviews, they all say the same thing. Small Sips makes diabetes make sense. Search for the Juice Box Podcast, Small Sips, wherever you get audio. Nothing you hear on the Juice Box Podcast should be considered advice, medical or otherwise. Always consult a physician before making any changes to your healthcare plan. Today's episode of the Juice Box Podcast is sponsored by the Eversense365, the one year wear CGM. That's one insertion a year. That's it. And here's a little bonus for you. How about there's no limit on how many friends and family you can share your data with with the Ever since now app. No Limits. Ever Since. Well, everybody, we're going to jump right in. I'm back with Allison Smart. She was in episode 1652 called Save Levomir. It actually was out in October of 2025. And she's back with us today to give us an update about what's happening. And where are you right now?
B
I'm in Washington, D.C. right now working on this.
A
How long have you been at this now, total?
B
It has been two years. Well, just over two years. We started November 8th was the announcement that this insulin, Levomere Insulin, would be discontinued in the US and we started really later that month. So it's been just over two years.
A
Okay, and what, what has you in D.C. today?
B
There are several conferences this week and I've had some appointments with congressional offices, so conferences with Health and Human services members. And it's been a good week.
A
Okay. What do you think? I guess. Why don't you catch me up on what's happened since you were on the podcast last.
B
Great. Yep. So this is just. So we're in March and it was October. So in just the last several months, we've had a lot of progress. We've had bipartisan congressional support. Congressional members of both parties have sent letters to Health and Human Services asking for a path forward for production of Deadamere insulin. We've had high level meetings with the FDA that have been a much different reception than we had when we started this two years ago. Two years ago. The FDA is used to dealing with large companies, not a small patient advocacy group. Well, small. We're getting a lot bigger. And the reception, with leadership of both the drug shortage staff and the Office of Biologics and Biosimilars was very positive, very understanding and caring. The response now is we understand you've made a very clear that there's a distinct need for this insulin. And we're hearing about it from more than just your organization, which is excellent. And they said they really wanted to emphasize there's a clear path forward if Novo Nordisk will come and assist. There are multiple pathways that could work, not just one. So congressional letters, FDA meetings, physicians are reaching out. We have maternal fetal medicine specialists and those that specialize in diabetes and pregnancy specifically, and other physicians who are reaching out about the need for this insulin and willing to be part of meetings with congressional staff. We also have multiple manufacturers that we're talking with, ready to go, that could make this insulin if they get the needed help from Novo Nordisk. And then at this point, we are asking Health and Human Services to engage Novo Nordisk executives in discussions for production of this insulin. So that's our progress.
A
That's astounding, especially because it started with what you and your living room.
B
Well, but, yeah, but I was already initially, you know, communicating with others who needed this and all of us were saying, ah, what do we do?
A
Right, right. Yes. You pull together some voices who are concerned and if it takes two years to get them to, okay, we understand this is a thing we should be supporting. I mean, does it take two more years to get the next step? Is it, do you think this is going to go more quickly? Do you think Novo Nordisk is going to be receptive to this?
B
So they're signaling recently that they will help. They've signaled to some congressional offices that we will be willing to assist with drug ingredients with the right partner. I don't know, you know, we're. We're. I don't know. I don't know the timeline, and. But I just. Boy, we're making great progress, and there's a real need.
A
Yeah. That's so cool. So I don't want to be sour, but. But let me ask you a question. So when you go to Novo Nordisk and say, hey, stop, don't, please don't stop making this or let somebody else make it, they go, we don't care. And then you get some Congress people to write some letters to some people, and somebody calls somebody on the phone, and now suddenly it's a thing they care about. I mean, is it that simple, or is there more to it than that?
B
Honestly, I think it might be that simple. I do. I've stopped. Our organization is not reaching out as much on our own. It needs to come from bigger voices. But it absolutely makes a difference. I mean, manufacturers care. They care what people think, but they really care what influential members of Health and Human Services and our administration think for certain.
A
So is this a situation where it's just kind of like business, where, okay, it's not really something we want to do, but people who we count on for pathways, decisions, et cetera, seem to think it's important. If it's important to them, it's important to us. It's like that.
B
I'm hoping.
A
Wow.
B
We'll see, right?
A
Isn't it funny how the world works?
B
It is.
A
So when you're down there in those meetings, give me an example of you have a meeting today, for example.
B
Don't. This afternoon. I have a conference this afternoon.
A
I'll be attending a meeting you were at previously in days past. You walk in, are these people that you've met previously, are you giving them updates? Are these new people you're trying to get on board?
B
All of the above. We're in contact with quite a few congressional staff at this point that we've been working with for quite some time. Had a meeting yesterday afternoon with a congressional aide that I've been communicating with for over a year. But some of them are new, and sometimes it's just me, but often we'll include virtually physicians at the last minute or. Or others, you know, maybe constituents. So it's all different.
A
Explain to me how you go from a person, you know, a few people focused on something to a slightly bigger group of people to someone who can get a congressional staffer to sit in person with you. How do you build that? Because you're basically a lobbyist now for One very small idea. So, like, how does that work?
B
It takes time, it takes connections and it takes constituents reaching out. So, you know, we've been saying a lot, you know, reach out to your congressional representatives. It works best if we work in conjunction, if constituents reach out to their congressional aides and it even just to get to the right aide or the right staffer is difficult. You get to that point and then if they can talk to our organization, then we can reach out here from Washington D.C. and it, it works better if it's, if it's in conjunction and. But sometimes the staffers will talk to each other through connections. It's, it's been quite the journey.
A
Does it need to be? It's funny because I'm, I'm thinking about the, you kind of everything you're hearing people talk about, about eyelid cells right now. Right. As an example. So, you know, there's, you know, couple of people here and there on social media who are like, you should write a letter to somebody and you know, but I mean, that's not very coordinated, like do uncoordinated things. Do you think somebody like you, who understands this needs to kind of grab hold of those ideas and coordinate them? Is that, is that really the key to getting it off the ground and getting it taken seriously?
B
I do. I. It's easy to disregard a form letter or a form email. These congressional staffers get many, many emails. And so if it's just forwarding some form letter, it doesn't get very far. It needs, it needs some, some personal contact, you know, constituents or just a real, you know, maybe some officers are more concerned with certain areas than other. And it, it, yeah, it's, it's interesting.
A
So it's as easy like just sending off like a, you know, some guy on Instagram told me to send this somewhere and I found it that you don't think that's going to get much traction.
B
Not necessarily. Unless there are many, many, just a few here and there. People, people are frustrated when they'll say, well, I sent one message. One message doesn't get very far.
A
Yeah. How many? Many. What is many? Many.
B
You know, I mean, I've asked that myself and, and some have said, you know, If I get 10 or 20 letters, I pay attention. I think it depends.
A
Right. 10 or 20 letters makes them pick up, makes the staffer pick up their head and say, I wonder if I shouldn't mention this to the Congressman. That kind of thing.
B
Right. Or, or you can have a few that are really persistent just sending one or Two messages is really not going to bend. Move the needle. Yeah, but persistency and volume makes a difference.
A
Time, not. And maybe not just months either, but maybe years.
B
You know, it depends.
A
Yeah. Well, you're. I mean, your thing is, I mean, I guess take two minutes here for people who maybe didn't hear your last episode and tell them how this started, what the impetus was that got it all moving for you and why you thought it was so important to do.
B
Sure. So my daughter was diagnosed with type 1 diabetes at age 13, four and a half years ago, and we started on Glargine. So let me just lay out the. The different insulins, just as a update. You can. Newly diagnosed, are typically placed on a glargine insulin, which is Lantus and Biosimilars and even Tojo is a. Is glargine, but it's more concentrated. Those are, those are 40% of the market, so they're the largest part of the insulin market. Some don't tolerate Glargine well. And the two alternatives are just made by Novo Nordisk. They are Levomere, which is Dedomir, or Traceba, which is Degladec. And I'll use the second, the generic name. Even though there aren't generics of those insulins. The basic differences, they have different pharmacokinetics. Glargine insulins need to form microprecipitates under the skin and have a slow release, and that can be a problem. If glargine insulin is injected into a blood vessel, it can produce an unpredictable hypoglycemic event. Also, if glargine is exposed to heat, it can also produce unpredictable hypoglycemia from a shower or a sauna. And it's also acidic. So some people don't tolerate, well, the inconsistency of glargine, and some just don't feel well using it. So then some will use. And glargine lasts approximately 20 hours. Dedamere lasts approximately, well, well 8 to 14 hours. So it's typically given more than once a day. But there are some people who only need insulin at night for fasting blood glucose. So that's why that insulin is ideal for many. It also acts differently. It binds with albumin. It doesn't form those microprecipicates. So it doesn't have that same potential for unpredictable hypoglycemia if injected into the bloodstream or if exposed to heat. Degladec lasts 42 hours approximately, which can be a real problem with people who are used to being able to change the amount of insulin to correspond with different times of the day or to correspond with a menstrual cycle. Or teenage boys often have multiple more needs in the day versus the night. Pregnancy. We'll talk about pregnancy in a minute. And then. We haven't included NPH in our argument, but NPH is needed for pregnancy, but it doesn't have a stable profile like de Mer. It has a defined peak that can be difficult for type 1 diabetics, but is needed for gestational and type 2 diabetes. And then there are insulin pumps. Less than half of those who need insulin use insulin pumps. And even insulin pump users need backup insulin. And women with gestational and type 2 diabetes would not typically use an insulin pump. So those are the insulins that are available. Back to my journey. My daughter initially used Glargine, switched to Levomair, had excellent management for several years. We went back and tried Glargine again. It's just more difficult for her to maneuver with being a. She's an athlete and dealing with a menstrual cycle. She also tried an insulin pump and in her case it made the activity difficult. I understand some people can make it work, but we have many in our organization who used an insulin pump for years who appreciate the ability to go back to shots and then just back to the journey. So two years ago it was announced that Novo Nordisk would be removing Levomere insulin from the United States. We started working on this, formed a non profit. Our goal is continued access to this insulin produced by a new manufacturer. Of course we'd love it if Novo Nordisk would just continue to make it. They're not going to, but they're signaling that they might help a new manufacturer make it. That's kind of the journey. Can I talked about pregnancy for just a minute?
A
I want to talk about pregnancy. Give me one second though.
B
Great.
A
If I take you in a time machine back three years and ask you to explain insulin, do you go, I don't know. There's fast acting and long acting. And now?
B
Absolutely.
A
And now you have a. A granular understanding of it?
B
Yeah.
A
My question would be, when you talk to somebody at Novo Nordisk, did they always have this understanding? Like is. Is there a world where this got this far? Because four people in a room said, why do we need this old one? We have the new one and didn't have that understanding. This episode of the Juice Box podcast is sponsored by ever since365 and just as the name says, it Lasts for a full year. Imagine for a second a CGM with just one sensor placement and one warm up period every year. Imagine a sensor that has exceptional accuracy over that year and is actually the most accurate CGM in the low range that you can get. What if I told you that this sensor had no risk of falling off or being knocked off? That may seem too good to be true, but I'm not even done telling you about it yet. The Eversense 365 has essentially no compression lows. It features incredibly gentle adhesive for its transmitter. You can take the transmitter off when you don't want to wear your CGM and put it right back on without having to waste the sensor or go through another warm up period. The App works with iOS and Android, even Apple Watch. You can manage your diabetes instead of your CGM with the Eversense365. Learn more and get started today at eversensecgm.com Juicebox One year, one CGM the
B
variety of understanding is fascinating to me. So Novo Nordisk executives, some understand it, some absolutely don't. The pregnancy piece. Some understand, some don't. Here's another fascinating group to talk to. Former drug reps from who worked for Novo Nordisk. They were extremely well versed in the differences of pharmacokinetics of glargine versus dedimir versus deglidec. That was prior to 2015. 2015. So Levomir came out in 2005. Tresiba came out in 2015. And at that point Novo Nordisk reps were switched to promoting traceba to physicians. So it's older reps who really, really understand the value of Levomir insulin. But yeah, the, the level of understanding is certainly different. Well, depending on.
A
That's interesting. So I wonder if everybody can like understand. I'm sure if you're in a business, it's, you know, a huge company like Novo or other companies like that, it makes sense to you. But for the average person walking around who's running a cash register somewhere or like, you know, listening to this while they're plumbing like it's, it seems crazy to think that the company that makes the insulin might not completely understand the value of the insulin. And to understand that the, the reps were the ones that were really educated about it and they were probably the ones keeping the doctors educated, which kept the need up.
B
Exactly.
A
Right.
B
Exactly.
A
Yeah. And then, and then you lose that pathway or things become digital. I, I also, you know, I, I'm not lost that you, that what you said earlier was, you need to look. I don't know if you use this phrasing or if it's how it popped in my head, but, like, if you want to get somebody on your side and get them to understand what you're talking about, you have to stand with them in a room and look them in the eye. You can't send them an email. Or. I say, this is really. Because you seem crazy. Like, when you do stuff like that. Like, I'm watching people now. Again with the eyelet thing. I think it's very important. I don't talk a ton about politics on the podcast, and I probably never will, to be perfectly honest. But, you know, in that eyelet thing right now, as an example, you know, they're like, you should have somebody talk about it. I keep saying I'm waiting for, like, an. I shouldn't say this like this, but I'm waiting for somebody who doesn't look crazy to be talking about it. Like, right now, I just see people ranting on social media, and I'm like, I'm not interviewing you. I want Alison, who can sit down and go, wow, here it is. You know what I mean? Like, I want to have an adult conversation about it. Not that I don't think those people are well intended or that, you know, their efforts might, you know, bear fruit or anything like that. Just when I sit and talk about it, I want somebody who can break it down the way you. You can. And that person then needs to be in the same physical space as the person they're trying to explain it to, because look at all the words you just use. Glargine the like. You know what I mean? Like, degle. Like, who unders. No one understands that. And so, like, you know, what are you trying to get a congressional staff? What are those people, like, 23. They've been out of college for eight minutes. Right? And you're like. And you're like, degledeck. And they're like, lady, listen. You know, like, I don't know what you're talking about. Right. It's hard work, but it's really important.
B
Well, yeah, And I just gotta say, it varies. Some of the congressional staff are college interns, you know, majoring in political science. But some congressional and Senate representatives will hire a physician, a fellow, to be the one conducting these meetings. I had a recent meeting. No, go ahead.
A
No, that's just awesome. I'm sorry. Like, yeah, tell me. I'm sorry. Recent meeting.
B
Well, I had a recent meeting with. With. And the physician who was meeting with me and there were a few others. She's a nephrologist which specializes in kidney conditions. And she says, oh, we don't use Trecebo with our advanced kidney failure patients because of the long duration of action. So it. You know that. And so it was interesting because we were able to just sit down and really go. The nitty gritties of this. This insulin. But you're right, often I've had to learn to. I used to. When I started this, I think, well, let me. Give me 10 minutes to really explain the situation. And now I have to be able to concisely present this in two minutes Sometimes.
A
I want to tell you, you're better at it now than the last time I spoke to you, actually. Like, I can.
B
Thank you.
A
Yeah. Like, you can tell that it really felt. I'm glad you brought that up because I didn't want to say it without you saying it, but it felt like. It felt like you sat in a room and you thought, I need an elevator pitch for this.
B
Right?
A
Yeah, because. Because that was, like, super clear. Like, that would. That. That was really awesome. Like, you're doing. That's awesome. You know what? I keep imagining we're talking about the eyelid cells and, like, you'll get this. You get this insulin back on the market, and they'll find a way to, like, do that, like, the eyelid cell thing. Your kid will get that. You'll be like, oh, my God, are you kidding me? How old is your daughter now?
B
She's 17.
A
17. Do you think that she understands the. The value of this, like, and the amount of work and effort you're putting into it? Because, I mean, this is most of your time now at this point, right?
B
Oh, for sure. Yeah, she does. She's great. She's. She's very supportive and she'll occasionally talk about it, but she's much happ. Live her life and let me do my thing. And, yeah, as you can probably understand.
A
No, no, please. My kid doesn't, you know, care about the thing I'm doing either. Okay, I'm sorry. Go back to pregnancy. Why. Why is this so important for pregnancy?
B
Okay, so I want to bring this up in light of the Isla act, because I think people dream of this day when insulin is no longer needed. Right. Pregnancy is a unique situation where there are pregnant women with gestational diabetes. Over 100,000 women in the United States a year have a pregnancy with gestational diabetes and need insulin for just the duration of that pregnancy. We're not gonna you're not gonna inject someone with islet cells that's pregnant with gestational diabetes, right?
A
Yeah.
B
So this is a unique situation. For example, Let me just give you another example as I talk about the pregnancy situation. Yesterday I talked to a maternal fetal medicine specialist who's an OB GYN who leads a diabetes and pregnancy program at a major university. And he sees their, their division sees over 1500 women, pregnant women each year having pregnancies that require insulin. And Levomare has been their go to for pregnancy. NPH has been a backup if the woman has gestational or type 2 diabetes. But NPH is difficult for type 1s because of its defined peak. But he said, you know, and he, he even considered Glargine and Deglodec as off label for pregnancy. He said, and they always want to emphasize any of these agents is more important than nothing, but we're losing the one that's, that works well because a main need, when someone has gestational or type 2 diabetes, they often need most insulin for their fasting blood glucose levels at night. So you want this, you know, 8 to 14 hour insulin. So that's just an example. But I'll just lay out the pregnancy argument. Everyone should be aiming for good blood glucose control. But when a woman is pregnant that nine month period of time, if she has chronically high blood sugar, she has a much higher likelihood of a large baby. That's early, you know, preeclampsia in the mother. A lot of complications come from not well controlled blood sugar in pregnancy. And that's why the need for Levemir in pregnancy is so clear. It was shown by the FDA to be proven in pregnancy. It was involved in multiple well done randomized controlled trials, which Glargine was not. There's been one randomized controlled trial with Treceba in pregnancy, but that study was problematic. It didn't show outcomes. And the pregnancy argument is huge. And that's why we have physicians, many of them specializing in diabetes and pregnancy, that want to be part of these discussions and be able to explain why this insulin is needed for pregnancy.
A
Right. And even, you know, I mean, listen, I've, I've talked to plenty of people who have had type 1 diabetes and used a pump through pregnancy with success. I've also talked to some who offset that pump use with an injected, you know, basal insulin. There's a lot of different ways to, to get to the end, you know what I mean? And taking a tool away does seem ridiculous. Also the idea that, you know, I like the way you started with that. Like, you know, everybody hopes that one day we just won't need it. But the process to get to that, even though they have, you know, I just had someone on the podcast a couple of weeks ago, right. Who's had the islet cell transplant. They're using the new Tego autoimmune, the immune suppressant thing that. Not having a lot of side effects or none, maybe they're saying so far, and, you know, big success. It seems like this is a trial. It's not FDA approved. They don't have, you know, a warehouse full of islet cells to pump into all the people who have type 1 diabetes. It hasn't gone through the process of, you know, scaling up or trying to get it through, you know, the insurance process. I always like to say, like, if they figured that out today, if it was perfect, if they had, you know, they had a building full of eyelet cells to cover for everybody, and they'd still be 10 years away from figuring out how to get it to you and when it got to you, it might not be affordable to you to begin with.
B
Exactly. Totally agree.
A
Yeah. And it's fine to, like, I live hopefully constantly. I think it's. I think it's actually very important. But I get scared that there are people out there that are like, oh, I heard they cured type 1 diabetes, and this. I don't really need to take great care of myself anymore because this will probably be over pretty soon.
B
Right.
A
I do worry about that because it does happen to people. They get a little laxed in their care because they think, oh, it's coming. You know what I mean? Like, they'll figure it out.
B
Totally agree.
A
Yeah. So it's just important to keep your eye on the real way things work. I mean, Allison just explained that it took her, like, the better part of two years to get people to, like, take her seriously.
B
Right, exactly.
A
To get through that system. So when you reached out, what did you want to share? I'm asking you a bunch of questions, but I want to make sure that there's not something like a message that you wanted to get out or something you wanted to tell me about.
B
That's. Honestly. That's the main thing. Just that. And if we can. If anyone wants to reach out, it really works best as a coordinated effort. So if. If people are interested in this, they can reach out to our organization, to me, and then we can work on it from both angles. That would be super helpful. And I also just wanted to let you know if anyone kind of wants an overview of the situation, there was a recent article by the Chicago Policy Review that maybe I could send you the link for that. That just really explains the problem. Well, this does require funding if people are interested. If you could reach out with that, you can just reach out to our website, alliancetoprotectinsulenchoice.org I just wanted you to know that we really had a lot of momentum, especially in the last few months. So if we can get some more, both physicians, patients, just everyone reaching out about this, it really helps more hands make this work a lot better. So. And I just kind of wanted to describe the situation again that with all the, with all the focus on as you. Exactly as if you said, you know, this excitement about possible cures, we're not going to outgrow the need for insulin. We're just not the newly diagnosed, the pregnant people just. And even the typical type 1 patient, we're years away from that solution. So if we lose sight of maintaining access to insulin, I even had, I had a physician reach out to me that in her state NPH was removed from basically the Medicaid formulary, which having an insulin removed from a form from a major state run formulary plan is often the first step to discontinuation. Can you imagine if they removed nph? I know in our type one community it's not looked on highly but boy, it's used a lot around the world and it's very important for pregnancy. And new manufacturers are working on Glargine. I mean that's, we're going to be left with Glargine and Glargine works well for a large amount of people, but for some it definitely does not. And so removing choice and not focused on just being able to have sustainable manufacturing of this product that is required to sustain life and pregnancies is problematic. So just wanted to spread the word about that.
A
Alliance to protect insulinchoice.org yes. And you said things have been picking up recently. What do you attribute that to?
B
Initially two years ago when we wrote. So for example, when we reached out to the fda, the FDA didn't want to meet with us. They basically sent a response, said, oh, you've got available alternatives. We were getting the response from Novo Nordisk, oh, you've got seven alternatives to Levomir. You can take Glargine, you can take Semglee, Resvaglar, Basaglar, Tujeo. They gave us several names for the same drug and occasionally that still happens. So here's another Example, the Utah Medical Association, I'm from Utah, voted in favor of resolutions that would enable manufacturing of this insulin. And then when that organization went to other states and other organizations, there was a lot of pushback, and they basically said, no, there's all these alternatives. And we know of one physician who's doing fine with pregnant women using glargine. So back to your question. Why the recent momentum? I think more physicians are reaching out and more patients are reaching out as they're being forced to switch. And saying, I'm. My control is worse. I have a man who just reached out who said, I've had type one for 25 years, and the first 20 years, I had horrible control. I just thought I had this horrible condition. I got on Levomir and I was able to dial it in, and I had great control. And then I've had to switch back again. And it went back to those initial 20 years of that horrible control. I think the increased momentum and the increased interest is people reaching out. Yeah, I think that's what it is.
A
That's awesome. Well, has this been a uplifting experience for you, or does it show you a side of life that is depressing? I mean, how do you think of if you can step out of it for a second? Are you motivated by what's happening, or is it taking the life out of you?
B
Oh, I'm motivated for sure. But absolutely everything you've said, I mean, it's every part of the journey. It's the highs and the lows, the certain. I've got this big, you know, we've got this big meeting coming up. This is going to be the golden ticket. And then, you know, that doesn't always happen. But excellent advancements that we didn't think were going to happen and then certainly disappointments from others that we organizations or, you know, entities that we thought would be engaged and involved that aren't. I wouldn't change it for anything other than I would change. I want this done. I want this to get done. But I wouldn't go back and say, I wish I hadn't done this. This has to be done. This needs to happen.
A
Well, you're pot committed now. There's no way out. Yeah, you got it. You gotta follow through to the end. Hey, you said that Novo said if the right company comes along to make it, do you have an eye on who that is and are they happy with that choice?
B
That is the mystery. So that's why we're compiling multiple, because we're hoping for the opportunity to come before them and say, okay, these are all the ones that we've talked to that are ready to go. But of course, it could be someone they choose, but that's been a big mystery. We've wanted to be able to present an optimal idea to them, and I don't know if we've reached that yet. We're hoping. This is definitely. It's like working a detective novel, trying to see inside someone's mind. Okay, what situation will be ideal for you? And we're trying.
A
What do you think the timeframe is to finding out if they're agreeable? Because I guess for people to understand completely, they've got to kind of. I'm going to use the wrong terminology here, but they've got to release something or. Okay, something. So another company can. It's about ingredients, right? So they probably have. Well, they probably have what stuff. That's their formula that they don't want to just give away to somebody else. Unless they get to a situation where they feel comfortable doing it. For whatever reason, they'll feel comfortable doing it. Do you think that's a thing that you'll know about in months or what's the.
B
Absolutely.
A
Yeah.
B
I. So I used to view this as a puzzle with a lot of missing pieces, and now I picture this puzzle in my head, and all the pieces have clinked into place. Even just the last month or two, especially the FDA piece was huge. Meeting with several departments with their leadership was a big deal. So all these puzzle pieces are linking into place except for the main one, the keystone. But because we felt like we had to get all those other pieces in place so we would be ready, and we are. So now is the time. I really think this will happen soon.
A
What do you think their main focus, nova's main focus is on choosing. Do you think it's. Do you think they're trying to put themselves in a position with a partner that they're helping or giving themselves a financial win out of this? Do you have any idea what their goals are before they say yes?
B
I think it's all of the above. I want them to come out looking, you know, the hero in this and to find the right situation where that's the case. And then just to step back. Some people wonder why another company can't make this without their help. Even though DERE is now off patent, for a new manufacturer to make this would take five to eight years and $200 million. I mean, it's just. And the uncertainty of proving biosimilarity to the FDA to a product that's not no longer available. A company is just not. Because I've had people say to me, certainly companies in India or China are working on this, and they were, but to our knowledge, they're not now. So it will require. It will absolutely require assistance from Novo Nordisk. It will require them sharing some drug ingredients for a few years and sharing some of the knowledge. And the right partner to do that will involve someone that won't be a competitor for them, will put them in the best light. And we're doing our best to find that right solution. And we really feel like we have multiple options. That would be good options.
A
Yeah. I do wonder if people listening understand that when, when a company develops a drug, right, like you said, there's ingredients in it, but it's not like, hey, I use King Arthur flour, the, the bread flour, and I use Domino sugar. And I, you know, it's not, it's not like, here's a list, and then I can go out and buy that same stuff and whip it together in the same way you describe in your recipe. Like, it's if. If a company says, oh, I want to make those cookies too, you know, they have to go buy the cookie and then break it down in a lab and figure out what's inside of it and then remake it. And they never remake it exactly the way it was made the first time. They. They make a similar of it, which is, you know, where, I guess where the word biosimilar comes from. But it's not as easy as, like, oh, just tell me. So you're actually asking them like, hey, you've got a, you know, you've got the recipe for the flower here, and you have. You got to tell us what that is so we can make it. Because we don't want somebody making a similar. That doesn't work the way the original works. We want it to be the original. And then Novo has to give away those secrets. And that's scary to them because that's probably something that they've, you know, they've made money on and developed, and they probably just don't want to give it away. And I think I understand that too.
B
So you explain that super well, exactly the way you explained. I kind of think of it as, you know, grandma makes amazing cookies, and you can try your best to make them, but you just can't get it just right. But if she shows you how to make those cookies, yeah, it goes much better. And the way you explained it is
A
exactly right because it's not just as easy as, like, whip the concoction for 60 seconds. Like, it's, it's happening in a certain mixer, in a certain temperature. The number of variables that go into making a medication and then reproducing it over and over again. It's much more complicated than somebody might think imagine.
B
Absolutely. And it required so much research and, and studies to bring this to the market. But to be fair, you know, they, there was some taxpayer money involved in that, and, and I just think there's, there's obligations on both sides.
A
If you're making me vote for my personal voice, I say, what are you doing, Novo? Just let it be like, you know what I mean? Like, just let somebody do it. If, if you asked me to sit here as the host of the podcast, I can see everybody side in it. Yep. I know why they don't want to give it away, and, and I understand why we need them to and, and all the reasons in between. So, yeah, I mean, get off your ass and do it. Like, let's go.
B
Yeah.
A
Allison's got to go home. She. What are you going to do after this? Do you think you've made a skill that you'll continue to use, or do you think you'll, like, you know, head back to the farm and stare out the window?
B
I have no idea. I. It will be nice to use some free time to do some. Take my dogs for a walk. You know, it's been a fascinating, educating journey, for sure, but we're just feel like we're close. We're not there yet.
A
If someone else came to you a year from now, you're done with this, it's all working, and you worked the whole thing out, and somebody else came to you and said, hey, we'd like to hire you to do this again for us. Is it something that you found invigorating, or is it not something you'd want to be involved in twice?
B
I can't even go there. I'm just so focused on this end goal and exactly what you said, though, three years ago. I never, ever a million years would have thought I'd be doing what I am now.
A
Yeah.
B
But I just feel like this need, I have to do it, and I have to do it well. The motivation for me, I really feel like lives are at stake. Absolutely. Now and in the future. And the more I get into this, the more people talk to me. I mean, I really feel the literal lives are hanging in the balance, and the pressure is huge to succeed.
A
I can't wait. I, I, Please Keep in touch with me. Like, I, I want to know, like, yeah, I want to know if you end up working, like at a Michael's craft and floral warehous and you're just like, I needed something with just, just fun, Scott. Or if, if this is ignited something in you, because what did you do before this? I'll let you go after this, but what did you do previously?
B
I was a part time physical therapist. I don't know. I just did my thing.
A
Awesome. Allison. That's awesome. And a part time physical therapist who just spoke about insulin in a way that probably made somebody from Novo think we should probably hire her. She seems to really understand this. That's really awesome. I appreciate you giving me an update. Tell me the website again.
B
Alliance to protect insulinchoice.org and you're looking
A
for people's stories, their money, their. Whatever they can give to, to help.
B
Honestly, biggest thing, their ability to, to reach out and say, okay, I, I want to. I want to help. I want to reach out to congressional offices. But yeah, funding helps with that. But your time, you're really saying, okay, this, this, this is worth some of my time to reach out to congressional offices to coordinate with this organization and help this happen.
A
Yeah. I don't know if this will actually ever impact my daughter, but I really do appreciate all the effort and, you know, just your. Of your life that you've put into this so far.
B
Oh, thank you, Scott. I really appreciate this. You're. You're doing great things, spreading education and it's just. It's just the world needs people who are willing to engage and share and make good things happen.
A
Well, I appreciate you putting your foot forward on this one. Thank you so much and thank you for the kind words. Hold on one second for me, okay?
B
Okay, thanks.
A
Are you tired of getting a rash from your CGM adhesive? Give the Eversense 365 a try. Eversensecgm.com Juicebox beautiful silicone that they use. It changes every day, keeps it fresh. Not only that, you only have to change the sensor once a year. So, I mean, that's better. Hey, kids, listen up. You've made it to the end of the podcast. You must have enjoyed it. You know what else you might enjoy? The private Facebook group for the Juice Box podcast. I know you're thinking, oh, Facebook, Scott, please. But no. Beautiful group, wonderful people, a fantastic community. Juice box podcast. Type 1 diabetes on Facebook. Of course, if you have type 2, are you touched by diabetes in any way? You're absolutely welcome. It's a private group, so you'll have to answer a couple of questions before you come in. We make sure you're not a bot or an evildoer, then you're on your way. You'll be part of the family. I can't thank you enough for listening. Please make sure you're subscribed or following in your audio app. I'll be back tomorrow with another episode of the Juice Box Podcast. How would you like to share a type 1 diabetes getaway like no other? Join me on Juice Cruise 2026. You may be asking, what is Juice Cruise? It's a week long cruise designed specifically for people and families living with type 1 diabetes. It's not just a vacation, it's a chance to relax, connect and feel understood in a way that is hard to find elsewhere. We're going to sail out of Miami and the cruise includes stops in Cococay, San Juan, St. Kitts and Nevis aboard the stunning Celebrity Beyond. This ship is chosen for its comfort, accessibility and exceptional amenities. You're going to enjoy a welcoming environment surrounded by others who get life with type 1 diabetes. I'm going to host diabetes focused conversations and meetups on the days at sea. There's thoughtfully designed spaces, incredible dining and modern amenities all throughout the Celebrity Beyond. Your kids can be supervised and there's teen programs so everyone gets time to recharge, not just the kids going on vacation. But maybe you get to kick back a little bit too. There's going to be zero judgment, real connections and a whole lot of sun and fun on Juice Cruise 2026. Please come with me. You're going to have a terrific time. You can learn more or set up your deposit@juiceboxpodcast.com juice juice cruise get a hold of Suzanne at Cruise Planners. She will take care of everything. Links in the show Notes links@juicebox podcast.com have a podcast. Want it to sound fantastic? Wrong Way recording dot com.
Episode #1798: Is Alison Saving Levemir?!
Host: Scott Benner
Guest: Alison Smart
Date: March 14, 2026
This episode dives into the advocacy work led by Alison Smart to preserve access to Levemir (detemir), a long-acting insulin previously slated for discontinuation by Novo Nordisk in the United States. Alison recounts the progress of her grassroots effort, including lobbying Congress, engaging with the FDA, coordinating with physicians and manufacturers, and pushing for broader recognition of Levemir’s unique role in diabetes management, especially for pregnancy. The conversation offers an authentic look at patient-driven advocacy and systemic change in diabetes care.
Quote:
“It started with what, you and your living room?”
— Scott (04:38)
“Well, but, yeah, but I was already initially, you know, communicating with others who needed this and all of us were saying, ah, what do we do?”
— Alison (04:42)
[02:07–06:36]
Quote:
“We've had bipartisan congressional support… Congressionals members of both parties have sent letters to Health and Human Services... [and] high level meetings with the FDA…”
— Alison (02:48)
Notable Moment:
Q: “Is it as easy as just sending off... you don't think that's going to get much traction?”
A: “Not necessarily. Unless there are many, many… One message doesn’t get very far… persistent and volume makes a difference.”
— Scott & Alison (09:19–09:59)
[10:33–15:49]
Quote:
“If glargine is injected into a blood vessel, it can produce an unpredictable hypoglycemic event… Some people don’t tolerate, well, the inconsistency of glargine, and some just don’t feel well using it.”
— Alison (10:33–12:42)
Quote:
“The variety of understanding is fascinating to me. Some [Novo Nordisk executives] understand it, some absolutely don’t. The pregnancy piece, some understand, some don’t... Former drug reps... were extremely well versed in the differences... prior to 2015.”
— Alison (15:49)
[21:03–23:29]
Quote:
“The need for Levemir in pregnancy is so clear. It was shown by the FDA to be proven in pregnancy. It was involved in multiple well-done randomized controlled trials, which Glargine was not.”
— Alison (23:08)
Quote:
“I get scared that there are people out there that are like, oh, I heard they cured type 1 diabetes... I don't really need to take great care of myself anymore because this will probably be over soon.”
— Scott (24:58)
[25:52–35:46]
Quote:
“Even though [Levemir] is now off patent, for a new manufacturer to make this would take five to eight years and $200 million... It will absolutely require assistance from Novo Nordisk.”
— Alison (32:29)
Highs and Lows: Advocacy is full of “the highs and the lows... excellent advancements... and disappointments.”
Motivation:
“I just feel like this need, I have to do it, and I have to do it well. The motivation for me, I really feel like lives are at stake. Absolutely. Now and in the future.”
— Alison (37:01)
Call to Action: People wanting to help should reach out via alliancetoprotectinsulinchoice.org and offer their voices and stories, not just donations.
On Personal Advocacy:
“You're basically a lobbyist now for one very small idea.”
— Scott (07:25)
On Political Process:
“Sending one or two messages is really not going to move the needle. But persistence and volume makes a difference.”
— Alison (09:59)
On Learning Advocacy:
“When I started this, I thought, well, let me... give me ten minutes to really explain the situation. And now I have to be able to concisely present this in two minutes sometimes.”
— Alison (19:17)
On Industry:
“It’s like working a detective novel, trying to see inside someone’s mind—OK, what situation will be ideal for you? And we’re trying.”
— Alison (30:34)
On Whether She’d Do It Again:
“I can't even go there. I'm just so focused on this end goal... three years ago, I never, ever in a million years would have thought I'd be doing what I am now.”
— Alison (36:51)
The episode balances technical clarity with real-world urgency, blending Alison’s expert-by-experience insights and Scott’s empathetic, down-to-earth perspective. It’s an engaging, empowering account of how a small group, persistent effort, and clear communication can potentially influence national health policy and corporate decision-making—reminding the diabetes community that every voice and story matters.