There's a new documentary in the works, all about the struggle of insulin access and affordability. Rachael Dyer and Scott Ruderman, who lives with type 1, join Stacey to talk about their experience making this film and why they think it could make a difference.
Pay or Die Film provides an inside look at how the soaring price of insulin in America is threatening—and even taking—the lives of people with type 1 diabetes.
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
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Stacey Simms 0:00
Diabetes Connections is brought to you by Dario Health manage your blood glucose levels increase your possibilities by Gvoke Hypopen 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 0:22
This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:27
This week, a new documentary in the works to show people outside the diabetes community the struggle of insulin access and affordability. Rachael Dyer and Scott Ruderman had an experience in Canada that made them say, we got to do this,
Rachael Dyer 0:42
where he was paying at home in America up to $450 a vial out of pocket then to have the same vial same manufacturer same everything brought to him for $21 in Canada and to watch Scott just break down and start crying there in the pharmacy and for myself as well. I was left in shock and disbelief, and we just looked at each other as we walked out and said it's time now to make this documentary.
Stacey Simms 1:11
We'll talk to Rachael and Scott who lives with type one about their experience making this film and why they think it could make a difference. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Welcome to another week of the show always so glad to have you here. You know we aim to educate and inspire about diabetes with a focus on people who use insulin and insulin access and affordability as you heard is what this week's episode is all about. I'm your host Stacey Simms. My son Benny was diagnosed with type one right before he turned to almost 15 years ago. My husband lives with type two diabetes. I don't have diabetes. I have a background in broadcasting. And that is how you get the podcast
In our most recent in the news episode. And that's the previous podcast episode two this one, I explained Lily's new move to drop the price of insulin lispro. Between that and Walmart's deal with Novo Nordisk, which lets Walmart price Novolog, same exact Insulet Novolog. a lot lower. We're seeing some interesting action on the cash price of insulin at the pharmacy. As I've said for years, though, I think it's going to take state and federal legislation to see real systemic change, you still need to jump through a lot of hoops, you still need to know that this is out there, you still need to find coupons in many cases, or you need to, you know, have really good insurance. There's a lot going on, and my guests this week are hoping that their documentary film will help educate people and make a difference. That film is currently in production. It is called Pay or Die. Here's a clip from the teaser,
Trailer here: https://payordiefilm.com/film-teaser
Stacey Simms 3:17
If that last bit sounds familiar, that's Nicole Holt Smith, who I've had on the show her son Alec died after rationing insulin, and that audio is from her arrest at a protest at Eli Lilly headquarters in 2019. Today, you're going to hear from the filmmaker Scott Ruderman and Rachael Dyer. Scott was diagnosed with type one in 2009. He is an award-winning filmmaker. He's worked on documentaries for Netflix and Hulu in the BBC and HBO, his documentary short piano craftman won Best Director at the Madrid art film festival.
He has a long list of credits, as does my other guest Rachael Dyer. She is an award winning journalist and producer who won a Southern California journalist Award for Best International feature, as well as a Clio entertainment grand winning entry for her work on the greatest showmen live the world's first live commercial for theatrical release
the story behind Pay or Die in just a moment but first Diabetes Connections is brought to you by Dario Health bottom line you need a plan of action with diabetes. We've been really lucky that Benny’s endo has helped us with that and that he understands the plan has to change as Benny gets older you want that kind of support. So take your diabetes management to the next level with Dario health. They're published Studies demonstrate high impact results for active users like improved in range percentage within three months reduction of a one c within three months and a 58% decrease in occurrences of severe hypoglycemic events. Try Dario’s diabetes success plan and make a difference in your diabetes management. Go to my dario.com forward slash diabetes dash connections for more proven results and free information about the plan.
Scott and Rachael, thank you so much for joining me. I appreciate you spending some time with me and my listeners today.
Rachael Dyer 5:14
Thank you so much for having us. Stacey. We're really great, great time and looking forward to being here.
Stacey Simms 5:19
Let me start if I could with you, Scott, could you live with type one? Just briefly, could you tell us your diagnosis story, you were diagnosed as and as an adult? That's correct.
Scott Ruderman 5:29
I was in college, and it was around 2009. And it was my first semester in college I was I was going to Suffolk University in Boston, Massachusetts. And for about two weeks, I really wasn't feeling good. had all the symptoms, I say got very blurry, drinking a lot of fluids. I woke up one morning, and I just couldn't feel my legs from my waist down. It felt like they were being bags, I went to the school infirmary. And they they told me it sounds like type 1 diabetes are just diabetes. But they weren't. You know, they said it's probably not. But when they actually took a glucose reading, they left the room, the nurse came back in and she said, Look, I thought the meter was broken. But I checked my blood sugar and it's fine. Your blood sugar is not, it's not reading on the meter. So it's definitely going to be high, we want to send you an emergency room. So I went to Mass General, and I checked in and I was there for about a week. And then I resumed classes the week after it was it was a really hard week. But it was just one of those things. And I think a lot of type ones could relate that you just have to accept it. And the learning curve is it took a few years to really get on top of it. And then as the newer technology came in, it just got easier to manage.
Stacey Simms 6:42
So what led you all to this documentary? I assume it didn't happen as soon as you were diagnosed, Scott, but can you tell us a little bit about kind of what led you down this path, of course.
Rachael Dyer 6:53
So this has been a passion project for Scott for some time. And Scott and I actually met working together in the field. So obviously, we're both in the documentary business. And we just finished up working on a documentary together. And then I have a journalistic background. And I had done quite a few stories where I was looking at a lot of Americans traveling to Canada to get alternative medicine up there and their prescription medicine out there because it was a lot cheaper. I hadn't ever focused on insulin, but I had done other stories. So when Scott and I had met in the field and started speaking, Scott had told me that he was a type one diabetic, which I knew nothing about at the time, I knew very, very little about diabetes in general, let alone type one. And I was traveling to Canada because I'm Australian and half Canadian, and I was visiting my family. And I asked God to come with me. And I told him that I done some of these stories about, you know, Americans traveling up there. And Scott didn't believe me at first. And I thought that it was crazy what I was talking about. But we went, we went to Vancouver and we said, Look, I said why don't we just try. Let's see how we go. So he went to a few pharmacies and there and then the pharmacists were great. And we explained our situation, you know, Scott had shown brought in the insulin that he was on. And they, you know, were so generous and welcoming and kind and said to him, Look, what insulin Do you need right now for this trip? What can I help you with? And as Scott likes to explain it, he says it was like he was a kid in a candy shop, just to have that overwhelming experience with insulin that was so inaccessible, and so expensive in America to come forward and have it brought to him where he was paying at home in America up to $450 a vial out of pocket than to have the same same vial, same manufacturer, same everything brought to him for $21 in Canada, and to watch scotches break down and start crying there in the pharmacy. And for myself as well was I was left in shock and disbelief. And we just looked at each other as we walked out and said, It's time now to make this documentary. We have to do something about it. So that led us on our journey.
Scott Ruderman 9:19
I have to stay Stacy, to Rachel's point, it was a very emotional experience. It was one of those experiences where you feel joy but kind of frustration and at the same time I think I say this all the time. I really looked at my hands and for the first time I said Well, I'm feeling a little bit more accepted and cared for and thought out for then my experiences going to a pharmacy in the United States where I need more insulin and my prescription. You know, it's not it's not fully made out for the month yet and they're kind of like no, you have to come back next Tuesday and I can walk out of there and they know I could potentially die without my Insulet So it was just quite an experience. And to Rachel's point again, yes, we both said we're making a film about this.
Stacey Simms 10:07
So it seems to me that just from what you've said, it looks like it changed a bit though from Why can't we get more affordable insulin in the US? Why can't you like you can in so many other countries walk in and buy what you need to people are dying? And I'm curious, did you realize that as you started this project, or was that always part of the story all along?
Scott Ruderman 10:27
For me, when I was doing the initial research, you know, when I realized, the first thing I said, in my head, I wonder what people are doing that can't afford it, and where they're going, and upon my initial research, you know, obviously, people that can't afford to go on Facebook, you know, the clinical black market and media. But then I started reading all these stories about people rationing their insulin, and going into decay and dying just to make ends meet. And that's where things got a little bit more serious. And like, Whoa, this is not just being able to afford it, people are actually losing their life because they can't afford it. And that's kind of where the film kind of took it. It's kind of approach was that this is an issue and people are dying.
Stacey Simms 11:09
Rachel, what do you think the film is for? You know, it's very difficult, as you probably know, and as you live with type one, Scott, it's difficult to explain any of this to people who don't live with it day in and day out. I'm curious who you're producing this for, of course, and
Rachael Dyer 11:26
I think, you know, with anything, that is a huge challenge with trying to firstly explain an illness, which a lot of people do not live with. And also to, to differentiate between type one and type two, that is obviously a challenge in the beginning. But you know, there are huge differences. And there are huge differences, which we do point out in the film. Obviously, as you know, with your son living with type one as well, it is a life threatening illness, and you are insulin dependent. So you know, we explore that, but also to exploring the medical system in America, which, as anyone who lives here can understand that it is very complicated, which they love for it to be to make everyone think that this is something that we just have to live with. But for me, being an Australian and Canadian, I think, the shock factor from an international audience and not having to not only live with a debilitating illness, but also to then navigate this healthcare system is what we're trying to present throughout the film as well and show the microcosm of this healthcare system in the United States. So I would say that this film is being produced not only for the type one community or the diabetes community, but for not only also to a domestic and international audience to show what is going on in the states and how unjust it is, and how unfair it is for people just to not be able to access life saving medication and medication that in a lot of other countries around the world is affordable and accessible, and you shouldn't be dying because of it. So it's for everyone.
Stacey Simms 13:11
I'm curious, too. It's so hard to get this message to be clear, because our healthcare system is so complicated to the point where you can go on social media any day and see people within the diabetes community arguing about whether or not people can afford insulin. In other words, you know, if you start any kind of Twitter chain or Facebook conversation, you'll have everything from you know, mine's covered. 100%. I don't understand what your problem is to why don't we just get a coupon to the president lowered the price of insulin? No, the president raised the price of insulin. It's so confusing at Scott, did you focus on any of that conversation? Or is this more focusing on individual stories?
Right back to Scott answering that question, but first, Diabetes Connections is brought to you by Gvoke Hypopen and you know, low blood sugar feels horrible. You can get shaky and sweaty or even feel like you're going to pass out. There are a lot of symptoms that can be different for everybody. I am so glad we have a different option to treat very low blood sugar Gvoke Hypopen is the first auto injector to treat very low blood sugar Gvoke Hypopen is pre mixed and ready to go with no visible needle before gvoke. People needed to go through a lot of steps to get glucagon treatments ready to be used. This made emergency situations even more challenging and stressful. This is so much better. I'm grateful we have it on hand to find out more go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit g vo glucagon.com slash risk.
Now back to Scott answering my question about whether the film looks at the bigger system or focuses on individual stories.
Scott Ruderman 14:56
That's a great question. This is a question that's brought up a lot as well. Let's just within our team, you know, this film is really, through, you know, the stories of people that are struggling. And we're capturing those human stories and seeing kind of the lengths, they are going to try to get access to the medication they need financially. And through their stories, we will kind of go into a little bit about the complex system, as well as politically what's happening. But the idea of the film is, this is a very character driven film. And we want people to be able to familiarize themselves with these characters and be able to, you know, say, well, that could be me, or that could be my friend's daughter who has type one or, you know, not even just type 1 diabetes. I mean, there's other medications that are so expensive, that anyone can kind of put themselves in those shoes and be like, what do I do if I can't afford medication. And that's really the shock factor we want to bring through in the film and urgency, because we can go on and on and on and talking about the complexities. But the problem is, it's never going to be solved, unless you're faced with the realities of it yourself. So bringing that to the viewer of making them feel like they are in the position of what our characters are going through is the goal to show the reality of the struggle
Rachael Dyer 16:16
to Scott's point that is very much the focus of the film, but we do have experts that we are speaking with that, breaking down the complexities behind it and showing how the system works. And with the experts that we have, they do actually show that the complicated system is being put there for a reason to make people feel like it is more complicated than what it actually is to make it so confusing that people just throw up their hands and say, I can't be bothered, this is just the way it is, which is certainly not the case. And it doesn't need to be the case. So you know, we do have the experts that have come in to break down that process and make it as simple as possible so people can understand this is not the way that it needs to be. Yeah,
Stacey Simms 17:03
that's great. Scott, what conclusion do you come from after this? I mean, I agree with Rachel, it's complicated, because it's designed that way. I do think the government will eventually get involved. We're seeing states now start making some changes. I'm not sure the federal government will ever take action. But you know, is it going to be a change in list price? Are we going to need to get rid of pbms? You know, did you draw any conclusions from this?
Scott Ruderman 17:28
You know, I think one of the the challenging things is the barriers of entry for just anyone trying to make a change with what's happening. And part of making this film is to kind of shine light on how complicated this system is. And no, this is this film gonna be the ultimate change? No, but it's trying to make the world a better place and down the road, do I think Insulet will be free? No. But I think just recently in the media over the last few years, this issue has been hot. And I think people are catching on and people are realizing that there needs to be more, you know, regulation on this. And prices need to be more affordable. I mean, think about when insulin, the discovery of insulin and Frederick Banting. I mean, the whole reason he sold it for $1 was so no one can make a profit of this. And I think looking at where we are today, I mean, discovery, insulin was a breakthrough discovery for the United States of America. And it's been celebrated. But if people can't afford it, and they're dying, because of it, that's going against the whole idea of making it affordable with bandings purpose to selling it. Hopefully, this is just a wake up call to say, hey, insulin was to to help people not to make profit off.
Stacey Simms 18:46
And I before Rachel jumps in, because I know she's half Canadian. Dr. Banting was Canadian, so we have to give the props. I know, I know, you meant you know, the manufacturer in the United States, and really purchasing getting all of that. But tell us a little bit if you could Scott about maybe some of the you said characters tell us a little bit about the people in this piece,
Scott Ruderman 19:05
of course. So you know, we have some principal characters, we've been following Nicole Holt Smith, who lost her son Alec, he was rushing his insulin, he couldn't afford, you know, the monthly cost. And he, he went into decay and died. And she's been fighting on the Minnesota State level to try to get access to emergency insulin in Minnesota. And we've been following her kind of battle on the state level. So that's one of our main stories. Another story. We've been following a mother and daughter who've been living out of their car because they need to make ends meet and you know, they're both type one, and they couldn't afford their insulin. So unfortunately, they were living in their car trying to survive, and they're the ones that crossed the border to find cheaper insulin in Canada. So we followed that story. And then we also have another story of a newly died This is during COVID. And the reason we brought that story in is we needed to, we want to cover all angles, we don't want all our characters to be this repetition of, I can't afford insulin, it's they're all struggling in different ways. And our COVID story of being diagnosed on COVID is, is to show the reality of what it's like and how your life just flips with type 1 diabetes, the management side, the physical side, and then again, the financial side. So it's all those aspects are in that story.
Rachael Dyer 20:29
Yeah. So just to Scott's point, I think that what we're trying to capture with all of our contributors and following their stories is it is just that it is a financial, emotional and physical burdens that, you know, everyone who is diagnosed with Type One Diabetes goes through on a daily basis. And I think that is the main emphasis that we really focus on throughout the film. And you see it through the stories, you see it through the emotional, physical and financial burden that they go through. And I think where Scott and I work well at both together, but our style as documentary filmmakers, is we are a very small footprint on the ground, a lot of the time, it is just Scott Nye traveling together. So we have a very personal relationship with the people that we film with, and they open up their world and they let us in and we become very familiar with who they are. And you see the heartbreak, you see the tears, you see the joy, and hopefully that is what is going to come across on film and and in the stories and if anyone has a daughter has a mother has a son has a child that is struggling in any capacity, whether it's with type one or something else, I feel as though that they're going to be able to relate. And that's the purpose behind these special stories that we're bringing to the screen.
Stacey Simms 21:58
Scott did anything surprise you, as you talk to these folks, when you live with type one yourself, I'm curious if anything that they said or anything they shared, took you by surprise,
Scott Ruderman 22:07
not only surprised, but as we kept going back into the fields, and filming, I think, you know, realizing that I am a type one and that this could happen to any day just kind of drop the reality perspective back to me. And I'm feeling what they're saying. Because, again, this I could be in this position. as a freelancer alone, covering my own health insurance, a bad month puts me in a bind. I'm actually the subject of my film in a way. So it's a very interesting connection. And it takes a toll on me. Every time I go and film, I need space after to just process what I'm hearing and what I'm going through, I think filming with Nicole Smith hope of being a mother of, you know, losing her son, I think my mom like what my mom would go through. If I were to pass away because of this and following Nicole. And you know, that's where you kind of see a real mother's purpose of just she's not going to stop being Alex's mother. By doing that she's going to continue to try to make an example that this is not okay, and be a voice for all the mothers out there that do have children diagnosed with type one and could be struggling because when you turn 26 years old, and you're off your parents health insurance as a type one, it's a new learning curve. It's a financial learning curve. And it could be very difficult. It could mean the job you get where you apply. It's not what you want to do in life. It's what can I do, that's going to keep me alive so I can afford, you know, for my insulin to keep me alive. It's a very scary and Nicole always says it's that number 26. And I'm only 31 years old, and I was 26. I remember that moment. It's really hard.
Stacey Simms 23:58
Before I let you go, unless each of you this question, why do you work in documentary? This is a it's such a different type of filmmaking. It's so personal. As you said, Scott, you kind of have to recover if every time you talk to somebody, why do you do it?
Rachael Dyer 24:12
I'll jump in. I think for me, as I mentioned earlier, my experience and background was as a journalist for over 10 years and you know, I dealt with some really challenging and and hard hitting stories. For the my first four years in America, I was traveling the country and working in breaking news. And for me, with the 24 hour news cycle that has just become so relentless, my personality is one of which I just had to stop being on the ground for less than 24 hours and seeing these people let's hop right and wanting to share their story more and so naturally, I just transitioned over to wanting to be in the documentary space to spend money. more time with individuals learn about who they are and share these really important stories on the world stage. Rather than just jumping in and out for a one and a half minute nice cars. Yeah, for me, it was just important to be there with the people, and spend the time sharing these really relevant stories.
Scott Ruderman 25:19
For me. I love storytelling, I think one of the greatest things about documentary is to every project, you're in a different world, you are discovering the lives of people and what they're going through, and to be able to film that and see transformation and see someone change along the way along the process is extraordinary. For me, it's also extremely challenging. And being in a room with a camera and filming people at on the moment. It's in this sense, you know, I like to say in fiction film, you know, the director is God. But when it comes to documentary and nonfiction, God is the director, and you don't know what's going to happen in front of your lens, and to be there and capture a moment that could only happen once and walk away with that and be part of that is what keeps me coming back to make more documentaries.
Stacey Simms 26:11
And in general, and maybe just for this one, too. I'm always curious, how much more do you film than you use? Right? I mean, it's got to be hours and hours and hours that you're filming that you're not going to use?
Rachael Dyer 26:24
Yeah, I think that's always the fun part. The fun part for us, but definitely not the fun part for the editor when they have hours, and hours and hours of footage to go through. But yeah, like Scott said, I think that the difference between documentary and true documentary is that you do not know a lot of the time what is going to happen, you can only prepare so much. But there is a lot that is unpredictable and doesn't happen and you you know, you want to film that you want to see the change and evolutions in these people. So again, I think it depends on the documentary, the subject matter, but and also to where you initially thought the film might go might not be how it ends up in the Edit. So we're not at that stage yet. So I think we will see but you know, there is a lot that we have filmed but a lot of special moments to within that.
Scott Ruderman 27:22
Yeah, another challenging thing about making a documentary. And you know, I just also want to point out there this documentary, until we started actually securing funds was funded out of pocket by me. And one of the hardest things is, you know, we have characters across the nation, West Coast, mid coast, and one of the hardest things is always being there at the right moment. And you know, being able to jump on a plane with all the gear get there and be there in time to capture it. That's a huge cost factor. And you know, that's a decision you have to make. That's one of the challenges about document and you're not with people, you know, we've been filming this for a few years now we're not with our characters fully on for years. It's it's coming back and going. And there are moments where it's exhausting for subjects because we're there and we have to take a break. And then we come back and you know, new development occurs. And that's the beauty of it is following and following and following it seeing that transformation.
Stacey Simms 28:17
Well, Scott and Rachael, we really look forward to the completion of this and seeing it and spreading the word. Thank you so much for joining me and sharing your story and we look forward to the release of the movie. Thanks. Thank you watch.
You're listening to Diabetes Connections with Stacey Simms. More information at Diabetes connections.com. I will link up the website to Pay or Die and any other information about the timing production, that sort of thing. Of course, there's a transcription along with this episode as there is with every episode since the beginning of 2020.
Just a real quick note about our experience with insulin and coupons. And I've shared this story before and it's been about a year now I realize that we decided we had changed insurance right around this time last year, and they wanted to change us from human log to novolog. But he's been doing great. I did not want to make any changes. I mean, you know how it is when things are going well. So we decided we had a little bit of a stockpile, Lino, let's fight it. And it took me a full two weeks of spending a lot of time calling the pharmacy calling my doctor we got some coupons I went to get insulin.org and went through that process and you know, immediately printed out a coupon for human log and said this will be $35 a month. It was not that easy. I took it to the pharmacy and they said nope, it doesn't scan so we had to jump through a lot of hoops. What happened for us was we got a new prior authorization from Benny's endocrinologist and the pharmacy ranted as a new prescription. So that helped us and you know what, I'm afraid knock on wood is word As I'm looking around here, we have not had to do anything else it renewed automatically for 2021. And so far so good. I'll keep you posted. if anything changes, it was a lot of hoops to jump through. I'm grateful I had the time and the knowledge to do so I know not everybody can spend that much time and has that good of a relationship with both their pharmacist and their endo. What a mess.
Alright, more to come. But first I want to tell you about another one of our sponsors Diabetes Connections is brought to you by Dexcom. You I want to talk about control IQ. This is the Dexcom G6 Tandem pump software program. And when it comes to Benny, even though I hardly expect perfection, I really do I just want him happy and healthy. I have to say control IQ the software from Dexcom. And Tandem has exceeded my expectations, Benny is able to do less checking and bolusing. And spending more time in range is a once these are the lowest they have ever been. This isn't a teenager at the time when I was really prepared for him to be struggling. And everybody’s sleep is better to with basal adjustments possible every five minutes, the system is working hard to keep him in range. And that means we hear far fewer Dexcom alerts, rural sleeping better. I'm so grateful for this, of course individual results may vary. To learn more, just go to Diabetes connections.com and click on the Dexcom logo.
If you're listening to this episode as a first airs, it's the first episode of October of 2021. It's also the beginning of a stretch of really, really busy weeks for me, I am hoping to have an episode every week this month. But please follow me on social it is possible, especially two weeks from now, that's kind of iffy, but I'll see what I can do. I am traveling to New York this coming weekend, I was supposed to go to friends for life White Plains, that is now a virtual event that's going to happen in November. But I'm still going because I have family up there. And I have some plans. So I'm really excited. And then the phone week I'm going to shoot podcasts live, which is a female podcasting event that I've been working on. I'm working with them to help with that event. So I'm really excited about that. And then later in the month, my husband and I are going to go away to celebrate a big birthday of mine. And in between I'm trying to make room for lots of just fun local stuff where I am because yeah, I mean, I don't usually celebrate my birthday all month long. But hey, I'm turning 50 I gotta tell you, I mean, are you Is anybody excited about turning 50? I'm not thrilled right about getting older. But man, I'm thrilled about getting older. I really have mixed feelings about this, because it is a milestone. So I'll be sharing more maybe on social media, we'll see.
But I do have a couple of fun announcements coming up. They will be mostly in the Facebook group, or at least they'll be first in the Facebook group. So if you're not in Diabetes Connections, the group please make sure to jump in there. end of October, maybe mid to late October. I've got a couple of announcements. I need your help with some upcoming projects. It's going to be a lot of fun. All right, thank you as always to my editor John Bukenas from audio editing solutions. Thank you so much for listening. I will be back with in the news that's gonna happen every Wednesday at 430. Even as I'm on the road, I've done it before. I don't mind doing it again, from my friend's homes, my sister's house or from hotel rooms. I like doing those in the news episodes live. So those will continue. I'll see you back here in just a couple of days. Until then, be kind to yourself.
Benny 33:12
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged