There's a new way to connect people with diabetes who take insulin with assistance programs. It's a new website from Beyond Type 1 and, of course, it's not without controversy. GetInsulin.org launched earlier this month, so we asked Thom Scher, the CEO of Beyond Type 1 to come on the podcast.
Thom explains what the website is all about, why they started it and how it works. He also answers our questions about why Beyond Type 1 accepts money from insulin makers, what that means for this program and why they teamed up with groups like the NAACP to get the word out.
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Episode Transcription
Stacey Simms 0:00
Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Gvoke Hypo Pen, the first premixed auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.
Announcer 0:21
This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:27
Welcome to a bonus episode of Diabetes Connections, I want to take some time and put this episode out quickly to talk about the new program from Beyond Type 1, get insulin.org if you are new to the show, I'm really glad you found us usually put the episodes out on a weekly basis. But sometimes we throw bonus episodes in here and there.
My son was diagnosed with Type One Diabetes right before he turned to almost 14 years ago. My husband lives with type two diabetes, I don't have diabetes, but I have a background in broadcasting and local radio and television news. And that is how you get the podcast. And that's why this show has a little bit more of a newsy feel and newsy type feel than some of the other really wonderful diabetes podcasts that are out there.
Now earlier this month Beyond Type 1 launched a new program it is hosted at the website get insulin.org. They say this connects people with diabetes who take insulin to assistance programs and low cost solutions that match their unique situation. I was interested to learn more. And so I asked the CEO of Beyond Type 1 Thom Scher to come on. Now get insulin.org is kind of a clearing house. I will link up to it. Of course in the show notes.
The information has been out there for a while these are coupons and assistance programs from the major insulin manufacturers, the only insulin manufacturers geared for people in the United States. As you well know, it's a complex situation, there really is no easy way to find out exactly what you qualify for, you know where to start. And that's what this aims to do a lot of strong feelings online. And in real life when this program was announced, many people upset that Beyond Type 1 does take money from the insulin makers, and that they have taken money and are putting the logos of the insulin makers on this website as well. Of course, I talked to Thom all about that.
If you are looking for this information, and you want the coupons you'd like to go through and see I can tell you before this interview begins, it really is a comprehensive website to help you find what you are eligible for. So go ahead if you're looking go to get insulin org and check it out yourself. I also need to mention the sound is just a little bit off on this interview on Thom's and it sounds a little bit metallic. And long story short, that is my fault. My technical error, but it shouldn't keep you from understanding anything. It just might be a little bit distracting at first, and I apologize for that. Here is my interview with the CEO of Beyond Type 1. Thom Scher. Thom, thank you so much for joining me. I appreciate you making time to talk about this.
Thom Scher 2:54
I am thrilled to be on Stacey, anytime I get to be on your podcast. It's a good day. Oh, thank you.
Stacey Simms 3:00
When we last talked, and I believe that was around the time of the partnership with jdrf. When that was announced, you're already talking then about trying to do something about insulin access. So tell me a little bit about what get insulin org is all about?
Thom Scher 3:16
Yeah, get insulin.org was probably born right around that time. Actually, it was it was over a year ago that we started talking about it. And really what we set out to do was build a one stop tool that could get people to the right resources for them available today. And that's not only urgent resources, in terms of emergency need less than seven day kind of need. But it really allowed people to get cusThom action plans that were based on their individual circumstances. So things like income, prescription location, insurance type. And rather than get them a list of what is the frankly messy, messy web of a lot of different options, they get the options that are actually specific to their circumstances. And we set out to build that and have it be a relatively easy to use and friendly tool for people that are in that situation, which we know is frankly far too many people.
Stacey Simms 4:11
So how does it work? I mean, I'm it's easy to see you can get on it and click around but I'm curious to hear your words. How do you explain it? What will people find?
Thom Scher 4:18
At its core, what we ask of you is a very small subset of information out of the gate, I believe it asks you for zip code, it asks you for what specific insulin you're on both brand and depending maybe the product itself and or vial, etc. And then asks you what insurance type you're on. And at that point, the system starts to essentially tree out. So if you're on commercial insurance, and for example, on certain products from certain manufacturers, we're good. We'd have all the information we needed that point to tell you, for example, a copay card could be eligible for you based on what you've told us. If you say you're on Medicare, we're probably going to need additional income elements we may need to know if you're on no interest. Whether you were laid off as a result of COVID, those kind of questions come up in the flow as we work to essentially filter out the things that aren't relevant to you. So what you get at the end is just the specific programs that are relevant to you, I want to be clear, we're not acting as an actual Assistance Program, what we're doing is essentially eliminating the guesswork that's gone in for far too many people in this at that point, in time of not knowing which programs they should be going to in the first place. This project was born out of stories about just that, where we hear, frankly, these harrowing stories of people taking a day off of work, going into a clinic being told there might be a program available to them filling out an application having extension only to then be rejected, not knowing that it's because they'd applied to the wrong manufacturer or the wrong program within a manufacturer not knowing that they were actually being Medicaid eligible, those kinds of problems, and they kept happening. And for me, that's an awareness and routing issue. And I want to sort of double down this is far from systemic reform here that we're talking about. But what it's doing is offering a tool to those patients, and frankly, the providers that are helping them ensure that they're getting to the right place out of the gate.
Stacey Simms 6:20
So it's like a clearing house. You know, we've seen those piecemeal posts here and there Lilly has this, you know, novo has this you can apply if you've lost your job. This is a place where you go and put a little bit of information in and narrow it down through all of the assistance programs.
Thom Scher 6:36
Yes, so it includes programs from Lily violin, Novo Nordisk, and Santa Fe, as well as various government assistance options, in particular your state Medicaid programs, as well as Medicare information and chip information depending on state. And all of that is essentially aggregated. It also includes patient assistance programs and commercial programs. So that includes things ranging from copay cards on the commercial side, for example, or cash programs, and also the actual patient assistance programs. And that's important, because it's another area where patients have friction point. Because, as we all know, if you call the lily solution seller, they can't help you with your Novo Nordisk product. At the same time, if you apply to the Lilly cares patient Assistance Program, you may not be getting information about what you couldn't be getting from the commercial side, there are all sorts of bright lines that, frankly, are set up for regulatory reasons. And that's fine. But by injecting a nonprofit in between, we were able to create a one stop clearing house as you put it, and that's a really good way of thinking about it.
Stacey Simms 7:42
What happens to the information that I put in to be on type one,
Thom Scher 7:45
if you vanishes, it vanishes, it vanishes. Stacey, it's a great question. It's plastered all over the site, because we get it a lot. Everything you're inputting is done browser side, nothing ever communicates to our server with the exception being at the end if you decide to email the substance of it to yourself. And at that point, we use it for very strict purposes. And that is to send it to you and then purge it off of our servers as well. So we're only looking at the data in aggregate traffic location of that traffic, and then generation of action plans. So the number of people that are actually getting to an action plan itself. But outside of that we don't retain any of that information. It's actually a real point of concern, in particular, for often the people who need these programs most it's also a fear that we're just passing marketing information, for example, along to a manufacturer and we're very much not,
Stacey Simms 8:37
I'm curious about how the conversations went, because I imagine there were some people in the room who were like, We need this, we got to capture this information, because that's what everybody does on the web, right? I mean, you know, when I put out my book, I was shocked when my website, people were like, Oh, you got to capture every person who buys it does this and you know, people opt in, but at the same time, it's stunning how much information you can capture, if you want to, can you give us a peek into those conversations?
Thom Scher 9:01
Yeah, I think that there's always a give and take in those conversations. And for me, it stems from the goal of what we were trying to accomplish seamless, rapid information to actual people in need. And in that case, I don't need to capture that information. And in fact, I don't want to, they can slow the process down. And frankly, it adds a layer of this sort of thing is some kind of weird marketing output that was never really meant to be the entire premise at the get go was, look, there are people who don't know what options are available to them. And this is for them, at the end of the line are real people do not know which programs are available to them. And I want to add, it's unfortunate that that's the reality here. It shouldn't be on individual people to have the level of health literacy required to navigate the system. But that's the system we're in. And if we can reduce any of that burden, then that was the goal at the outset. And so I think the really honest answer to your question is I had no tolerance for those conversations. In the early days, when we started building this thing
Stacey Simms 10:05
I have to ask you about the elephant in the room, which is, and we've already seen criticism online and elsewhere, that there is money changing hands here, that Beyond Type 1 is taking money from the insulin manufacturers to put this site up to drive people to the insulin manufacturers, to be very clear, what is the relationship did the insulin makers give money to have their their logos and their websites as part of this, and separately, to acknowledge that you've been on type one has taken money from these manufacturers in the past.
Thom Scher 10:35
So first off, yes, we've taken money from the insulin manufacturers, it's disclosed on our funding model page. And we're clear about that. And what I maintain high degrees of transparency on it right on the top of the website, on the website, if you get there, it's on the homepage, it says it was funded by the four manufacturers, you know, this kind of a project is complex. And frankly, having that many manufacturers on a mass catalog with the partners of sorts that we do is a hard set of cats to herd anyway. But in this set of instances, what we needed was funding in order to be able to build the second or maintain the sun in order to get awareness out about the site. And the tool itself is pretty powerful on the back end. And I'd love to get into that a little bit more. But in terms of what it can do moving forward, because there's a lot more that I think we're going to be able to do with it. The other thing, though, is that we frankly, needed a working relationship with the manufacturers, in order to understand the nature of some of these programs really get a look under the hood at all of the edge cases, all of the one off instances in one off states where there have been for example, copay caps passed or various laws have changed the eligibility of programs understand the dates when those programs reset annually understand changes in eligibility to them and build a working relationship that will allow us to also maintain that accuracy on the site itself, so that we're directing people to the right places, you know, this information, one of the critiques has been it was publicly available. And there were a number of organizations that had big lists, we were one of them Beyond Type 1.org. Slash get dash insulin for the last couple of years has aggregated this kind of information. But what it hasn't done is have the degree of eligibility copywriting that you've described as Clearinghouse, rightfully so that this tool does, we're really able to get in there and say, Hey, based on what you've told us, we believe you're eligible for this program, you're gonna have to go to the program to confirm that. But that is so much more effective, having been able to actually work with the manufacturers themselves, and have that working relationship to not only ensure accuracy at launch, the accuracy and awareness of the tool moving forward.
Stacey Simms 12:44
I think there are some people in the community though, who would say we shouldn't be working with the insulin manufacturers, we should only be fighting with the insulin manufacturers, because the prices are so outrageous. And the situation is so dire. Obviously you disagree with that. Can you address that? Yeah, I think it's right,
Thom Scher 13:03
for patient advocates to question the relationships held by patient advocates, you're so friendly advocates anywhere, I don't think that's a bad thing at all. And I respect whose view is that you shouldn't be working with insulin manufacturers in the diabetes space. I do disagree. I think that it's important for us to have a working relationship, not only to be able to fund critical projects that can have a meaningful difference in people's lives. But in addition to that, to have a working relationship and a seat at the table to help drive change for work. You know, I think that some of this critique comes down to if we're working with them when we critique that, you know, I mean, at launch of this, we also published an open letter of sorts from me where I'm very direct that I believe it's unacceptable to see less prices having rose in the way they have, I'm very direct, but I think it's unacceptable to see rationing where it is, it's unacceptable to have the rebate system how it is. But none of that, for me, Trump's, what is the importance of getting this out to the people who need it and having the support to be able to do that. And I'll add on this, Stacey, you don't watch something like this in this day and age with insulin manufacturers about insulin and not know that that critique is coming. We of course knew that critique was coming. We launched this in spite of that knowledge, because we believe that downstream are actual people who need the tool. And that came out over and over again, over the course of building it has come out over and over again, Since launching it in no way means we're giving up on the upstream fight. And in fact that upstream fight is a much harder, much longer road. And it's a road that we absolutely believe in. We believe it definitely needs to happen. But it's not as simple as asking for list price to simply be lowered. In fact, there's quite a robust set of evidence out to the contrary of that. So I respect that view. But I disagree with that.
Stacey Simms 14:57
I'm curious, we're talking really days after this as long Have you heard from people that it's helped?
Thom Scher 15:02
Yeah, I have a member of my team said to me when we launched, and it's some of the most sage advice that was given about this, that launch day was going to be about hotcakes, we were going to see hotcakes from people that were critical of it, we were going to see hotcakes from people that really thought it was impactful, we were going to see patients stories about these programs working or not working for them, we were going to see industry leaders and sort of key thought leaders having strong opinions about one way or another. And then at the end of the day, none of that really mattered compared to the stories that we hoped would emerge about people actually using it. And we're starting to get some of those stories. And I, I was just reading one of my inbox from a partner at an org who sent us that they had walked somebody through it over the phone. And that they they'd gotten a phone call asking for help, and that they take them to the site and walk them through it, that it worked for them. We also had a conversation with them. We're doing some work with Dr. Dan Peters, on our leadership council. And she just had glowing things to say about its use case in clinic. And we saw a lot of that kind of commentary that this is going to be a really powerful tool for providers to be there. And so yes, I think you know, Far too often in the diabetes space, I think we get lost in some of the the higher level talking points about why and how we're operating and whatnot, when all the way downstream or just people trying to frankly, manage their diabetes, live the best lives that they can and get through the day sometimes. And that's a huge volume of people. And I think this tool more than anything is for them not for the hotcakes by myself or you or Twitter or industry kind of none of that matters to me by comparison to whether or not people are actually using it. And
Stacey Simms 16:42
curious to it also says in partnership with some groups that I'm familiar with. But I haven't seen in conjunction with diabetes issues before Feeding America, the n double A CP, the National Hispanic Medical Association, tell me a little bit about reaching out to those groups and why it was important that they get on board with something like this,
Thom Scher 16:58
it's critical to me, it spoke to what we were trying to do. I remember the Feeding America conversation really clearly the first one that we had with them, and they're phenomenal partners. And we're going to one of the things I'm really excited about with the tool is that we're going to add some food security information in terms of how to find local food banks that's based on some of the information that we're getting that's coming likely in the next week or two. With Feeding America. You know, one of the critiques that I think is so often dead on when we talk about helping those who need the help most is that people say well look, doing Facebook posts about Insulet affordability isn't really helping those that are sitting at a pharmacy counter somewhere not understanding how they're going to pay for insulin, not knowing what options are available to that Feeding America is on the front lines of the equivalent of that when it comes to food security. And they know what so many of those community health scrolls really look like they had tremendous insight for us into how we built this, how to get it out. And it gives us a direct mechanism to drive awareness of the tool in groups that may have outsize to me need these underserved communities. And definitely sick he is the same way NAACP has a robust health arm, and they think about the best way to serve those who need support. And you know, they obviously deal with that through various lenses. But we were honored to have their support and they and NHS and Feeding America, I think it speaks to the idea that this issue is one that, frankly, transcends the diabetes clumber station. This is so often about the people who are impacted by diabetes, who aren't part of those online conversations. They're not part of Camp set events and summits in the life. But they're absolutely impacted by the disease. Yeah,
Stacey Simms 18:43
I worry about that too, to be frank with you. Because you know, my podcast audience, as you listen to this podcast, you know, these are some of the most well informed, most engaged, these are people who may have the time to listen to a podcast who know where to find information. So to hear this, this push to try to get this info to people who might not be on Facebook, listening to podcasts, that just makes a lot of sense to.
Thom Scher 19:05
Yeah, look, I also will add here I could be asked for your listeners isn't that they perhaps need it. Although I encourage them go play around with the tool, see what it gives you let us know if you see anything that we can do to improve. But more than that, it's about sharing it. And I think some of the things that our team has been most touched by have been people who shared it with even the equivalent of, Hey, I may or may not support Beyond Type 1, I may or may not need this tool myself, I certainly don't believe that this tool should have to exist in the first place. But I acknowledge that it needs to. And there might be people who follow me, there might be people in my network who do need this tool. And so I'm getting it out there for them. And that resonates with me so much because it's the only way that you can get necessarily the people who really need it is through conversations like that, partnering with those on the ground that are really doing it and making sure that it's getting into that hands of the people that are actually not only using it, but working with the people who are using it.
Stacey Simms 20:05
I like that idea too of sharing it with the physician sharing it with your endo, or your general practitioner who may not know anything about Beyond Type 1 at this point. And then to have this for other people who may need it as well.
Thom Scher 20:15
Yeah, you know, Stacey, I'll add to on that there's a reason why we housed it at get insulin.org. It's not some brand play for Beyond Type 1. I think that for us, if this was some kind of traffic play of the like, like, sure those critiques are a lot more appropriate if we'd launched something and driven a ton of traffic to the Beyond Type 1 site with a bunch of click through now, now isn't what we did here. We tried to build this thing. So it could be standalone independent with a strong coalition of both diabetes and non diabetes partners. And frankly, a ton of touch points offline, to ensure that this gets out there, which we're doing. I'm doing this podcast, but there's also radio ads happen in certain places and digital marketing happening in certain places. Yeah, we're doing a lot of targeted work over the course of this quarter and into 2021. To make sure that this is getting to the right places, we just sent print versions of awareness materials to a ton of clinics. So this has a lot of tentacles that bring that we haven't talked about a ton. Because it's all part of what is a much bigger strategy around how to ensure that this gets out there to the right people. And the diabetes audience that you have is a core part of that course.
Stacey Simms 21:23
Thom, before I let you go, and you may not be able to answer this, and that is fine. You know, we're talking at kind of the peak of this incredibly historic, bizarre, I don't know what kind of words you want to use to describe it election year. I know, I'm not gonna ask about politics, don't worry. But I am curious, are you optimistic that we're going to see a progress on actual insulin pricing and changes? I feel like the last couple of years, even with the hot takes, as you say, there does seem to be a groundswell of if that support, maybe just better education among the public. I'm a little bit more optimistic than I used to be. And I'm curious if if you are
Thom Scher 22:00
no, Stacey, I don't know what you're talking about. There's an election and 2020 has things going on that are crazy. I, I am optimistic. Look, I think the reality here is that the system is very broken. And we all know the system is very broken. The unfortunate reality about diabetes is that it's not that it's diabetes broken. It's that diabetes is the poster child for how broken the system is. And that means that we believe the answer to that is regulatory reform. It's it's actual legislation, federal and state. I agree. There's been a groundswell. And I credit grassroots activists that I credit the work of number of organizations for that I credit a handful of politicians on both sides who've done work on this arena. But we are hopeful. I think that we're starting to see policy proposals that make sense that are gaining traction. Do I think we're going to have it immediately, you know, all of a sudden, on one day, no, I think this is going to take time. But I think we all know that with time, this issue is going to only get worse, unless more is done. So I am optimistic despite what is a relatively sad view on the reality in terms of the state of affairs.
Stacey Simms 23:11
Well, thank you so much for joining me to explain this. I appreciate it. And you know, we'll check back we'll see how things are going. And I do appreciate you taking the time to address the criticism and explain the program. Thanks, Thom.
Unknown Speaker 23:26
You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 23:32
As I mentioned, of course, we are linking up at Diabetes connections.com in the show notes, and there's a transcript there, by the way, as well. We do a transcript for every episode in 2020. And I hope to kind of go back and put more in. I've been doing this show for more than five years and more than 300 episodes. So there's a lot of transcripts to go back.
But I think it's really important that you get this information and that if you need the assistance that you get it, I would love to know what you think now that you've heard Thom speak out, I'm sure many of you are still quite upset he addressed the issue about taking money from the insulin makers doesn't mean that you have to agree with it. But I'm glad that he came on and explained the stance of Beyond Type 1.
I also want to add that I'm going to be doing an episode or social media post or something to get some information out. So as they say, watch this space, because I have a personal story. And I have a friend with a personal story. And we are both going through some difficulties using specifically Not a single amount but whatever the Lilly coupons. And as we are navigating through this, I am kind of waiting for the situation to resolve to share the information and what we've learned with you. So I really hope to bring that to you within the next week. But I will say there were two separate issues here. One, the annual cap that Lilly has that all the manufacturers have and how to get around that. And the second is why would it be difficult to use the Lilly coupon when you have commercial insurance if it tells you that you can. So there's a lot going on.
Anyway, more information as always At Diabetes connections.com Follow us in the Facebook group at Diabetes Connections the group or on social media me Stacey Simms, and I'll keep you posted on those two personal stories, one of which is my own story about using those lovely coupons.
Stacey Simms 25:13
Thank you to my editor John Bukenas from audio editing solutions. Thank you very much for listening. We will be back here on Tuesday with our regularly scheduled episodes. I will see you then, until then, be kind to yourself.
Benny 25:31
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged