#571 Insulin Cost: A Father's Fight

OmnipodJuicebox PodcastDexcomInterviewType 1 Diabetes

Nov 3

The father of a type 1 is trying to change insulin pricing in America. Support H.R. 4813 — Matt’s Act of 2021 at Insulin-Matters.com

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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:00
Hello friends, and welcome to episode 571 of the Juicebox Podcast.

When rods child was diagnosed with type one diabetes, and he found out how much insulin cost, he didn't just sit on his hands. He got involved rods here today and tell you about some legislation that he's trying to get passed. And he'd like you to listen to his story. And then consider helping out by calling your representatives and sending emails. We'll talk about that towards the end though, for now. Please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan are becoming bold with insulin. You may have heard me talking about wanting to add as many people to the T one D exchange as I can in the month of November. Well, diabetes Awareness Month is one day old right now as I'm making this. And on November 1, you guys added 54 completed surveys at T one D exchange.org. Forward slash juicebox. If you're a US resident living with type one or caring for type one, please head over and give it a look. This show is sponsored today by the glucagon that my daughter carries G voc hypo pen. Find out more at G voc glucagon.com. Forward slash Juicebox. Podcast is also sponsored by my favorite blood glucose meter, the Contour Next One, go to contour next one.com Ford slash juicebox. To learn more, and to get started.

Rod Regalado 1:57
Yeah. Hey, Scott. My name is Rod Regalado. And you and I briefly spoke a few weeks ago and and and you were kind enough to invite me on because we're we're trying to we're trying to pass a federal bill which puts a price cap on the cost of insulin. And so I'm really I'm just a single dad with a couple of kids at home. And, of course, that wasn't enough for me. I'm a glutton for punishment. So in fact, I actually brought in a foreign exchange student. So I've got three kids at home. And yeah, so that's kind of me and my son, Matthew was diagnosed with type one diabetes. And that's essentially how I started down this path about two years ago.

Scott Benner 2:43
So when you say we you're not you don't mean your lobbying Consortium? You mean? You? Right?

Rod Regalado 2:49
I mean, me? Yeah. Yeah, pretty much. Yeah. Let's find out. Yeah, pretty much a one man show. But, you know, this bill is going to die unless, unless our our brothers and sisters, our nieces and nephews, our parents and our kids demand some kind of change. And, you know, the status quo is just not acceptable. And that was, that was a reality. That hit me hard. When Matthew was diagnosed,

Scott Benner 3:18
how long ago? Was he diagnosed?

Rod Regalado 3:21
Yeah, it was September six. When he was 13 years old.

Scott Benner 3:26
It 2000 Yeah.

Rod Regalado 3:29
2019 19 2019 Yeah. Okay.

Scott Benner 3:33
2019 September, so you're just a year and a month into this? Two years, excuse me two years, I forgot what year was.

Rod Regalado 3:42
It happens to the best of us. Trust me, I don't think I'm the best. Well, you know, COVID COVID aside to kind of put everybody on the shelf for a year. So understandable. I get it.

Scott Benner 3:51
Fair enough. So, so two years with diabetes. You said you're a single dad have a couple of obviously a couple of people you're responsible for besides yourself. Right? What? What led to your even understanding of this? And the reason I ask is because as a person who has insurance, and whose child is covered by that insurance, I mean, I don't want anybody to get me wrong. I'm gonna play I'm gonna do a lot of devil's advocate thing while we're while we're talking today, right? Like,

Rod Regalado 4:20
no, perfectly reasonable. No, I want you to go right ahead. Hit me what you got.

Scott Benner 4:24
I don't know that in law. Listen, I know intellectually, that that insulin is incredibly expensive, and it's overpriced and, and all that goes along with it. None of that is lost to me. But in my life personally, insulin cost me $20 a month. Right. And so you know, what led to you being so aware of this and then tell me about how it impacted you and so forth.

Rod Regalado 4:49
Yeah, yeah, sure. So So Matthew was diagnosed and we take him to Children's Hospital. Truly, we found it accidentally I took him in for a sports physical That's how it kind of started, took him in for a sports physical. And that exposed the diabetes. And the very next day we were at Children's Hospital in Omaha. He was in there for about two and a half, three days. And they released him. Of course, I had to get all of the insulin and the ancillaries all the supplies, test kits, everything that goes along with it. And so after insurance, my out of pocket was north of 1000 bucks. But keep in mind, that's not just insulin, that was everything else

Scott Benner 5:36
hospital stay

Rod Regalado 5:37
the whole the whole kind of thing. No, the hospital stay was separate. Oh, okay. That was that was just the supplies I got you know CGM at that point.

Scott Benner 5:47
Meter Test trips, a little glucagon, some insulin needles, correct thing. Okay.

Rod Regalado 5:52
Exactly. Right. Yep. So 1000 bucks flies out of my bank account. And surely, if if they didn't ask me for 2000 that have given it to them. I just wanted my son home just wanted him home. So the following month rolls around, and time to replenish the insulin again. This time, I only need insulin, I've got all the ancillaries. And again, for short acting and long acting month supply after insurance. My cost was about 400 bucks. And now the gears are grinding between my ears. And I realize this is not sustainable. This is not going to work. So naturally, I call the insurance companies Is this legit? This can't be legit. I call my HR folks. See if there's any any recourse here. Is there anything else I can do? I call the pharmacist. Nope. It's this is what it is. And so I'm married to this invoice. And my son who's 13 is married to this invoice for ever. That's what got prompted me to call. Call a congressman. I don't know. I don't want to I got no rich uncle's and I've got I don't know any politicians. But I call it all. Yeah. I just called the office. I said, Hey, what is the deal with this? And that's kind of how this whole thing started. It was it was truly it was just a matter of me finding some resolution, long term resolution for my son, Matthew. That's what it was.

Scott Benner 7:27
So rod, you're talking about $400 A month by $5,000 a year that just suddenly gets added to your total of your out of your outgoing money. And it's for obviously for health. And so it comes first. Did you find yourself being able to pay it? Did you find yourself not paying other bills? How did you handle?

Rod Regalado 7:46
Yeah, right. Right. Right. So yeah, and that and that's, that's the problem. So luckily, I I make a good living. I work for a good company. And I'm my insurance I think is probably better than most. But the but my but my son doesn't have that liberty. He's He's He's 15. Now thinking ahead already. You're one right. So so yeah, to your question. How did I do it? Yeah. So you push one bill this way, and you push that bill that way? And you just figure it out? So the college fund? Yeah, sure. That takes a hit. College Fund, what college fund? Because you're paying off the hospital stay at the mera Lago with needles. If that's there, that's not going to go away. Retirement Fund. Yeah, that kind of takes a hit. Because now you got to shift what you're putting into that to compensate for the invoice that you got coming in every month. Yeah. So Right. And I'm not special. There's nothing special about me. But I do make a good living. I'm, I would say I'm middle of middle class. Not I don't make a ton of money. I'm certainly not destitute. But it's that's a burden. That's a That's a big number. Every month, every month.

Scott Benner 9:10
Is it fair to say that prior to diabetes, you felt like you were doing better than just getting by? Oh, sure. Yeah. Absolute. And then absolutely. Now you feel like I mean, listen, I don't honestly, I don't care how much money you make. I grew up broke $5,000. You might as well tell me a million dollars. That's a lot of money. You know, it is yeah. And a good point is that an amount of money that you can't come up with? Might as well be a million dollars. If I tell you if I walk up to a homeless person and say I need $50 right now to save your life. That that might or you might as well be telling them give me $50 million and bring me the Statue of Liberty. They can't come up with $50 it doesn't it's

Rod Regalado 9:48
yeah, you're exactly right. It is that is exactly it. So so we're just one family. So think about this for a minute. So in America There's roughly depends on what report you look at between seven and 8 million people that are insulin dependent. And type two,

Scott Benner 10:09
is that really the number? Geez?

Rod Regalado 10:11
Yeah, yeah, yeah. Yeah. So I think the CDC is, is claiming 7.5 million. And those are insulin dependent Americans. And, and the number of diabetics is growing exponentially every year. So when you when you factor in the type twos that are insulin dependent. I mean, that number is going to be massive in the coming years, massive. And so something has to give this log jam has to break at some point, it is financial ruin for so many families. And again, I'm just, I'm just one guy, Matthew was my son. He's my only son. Yeah, this is this is much bigger than us. When I started, when I made that phone call to my congressman. I was thinking about Matthew. And as I put my toe in the deep end, I realized this is so much bigger than me. And Matthew, is it is a massive, huge problem. Huge problem. So,

Scott Benner 11:19
okay, so you call you call, I don't even didn't even know who to call like I wouldn't. Like who

Rod Regalado 11:25
the hell? Yeah, yeah, I just so I called anybody would answer the phone, basically. And, and I realized, after a couple of months, that the only solution to this is a federal solution. And as you know, Scott, there are at present, there's probably 30 Plus states that recognize the problem. And so those states are passing legislation on a state level that price caps, insulin now, that's wonderful. But the issue with many of these state bills, is that all they'll throw $100 price cap at it. And that sounds great and makes fantastic headlines. But the issue is, if you don't have insurance, you pay the retail price. You're stuck with it. Retail Price, and and, and I do this periodically, and I'm not going to embarrass anybody. But I called last night and I do this every couple few months, I'll call and say hey, what's the price on this name brand fast acting insulin, and I did it yesterday. And I called a pharmacy in Little Rock. And they're fast acting for a box of five was 600 bucks. And then I called Tucson, another pharmacy 620 bucks. Well, guess what, you also probably need long acting. And that mirrors that within a couple 100 bucks, it mirrors the price of the fast acting. So suddenly, if you don't have insurance, and your state has passed a bill that puts a cap on it. Guess what, you're still tethered to that retail price. So Matt's act. Matt's act is truly a federal price cap. And so the way this bill works, is if you don't have insurance, the most you're gonna pay out of pocket is 60 bucks for the uninsured. Okay, it's remarkable.

Scott Benner 13:25
Alright, so I want to dig into it a little bit. So you call some you call a politician? And you say to them, This is what's happened to me. What do I do? I mean, did they say you're gonna get a bill passed? Like, how did you start down that

Rod Regalado 13:37
path? Yeah, yeah. So yeah, basically, I was calling anybody would answer the phone, and I called my congressman. And they were, they were very nice. And they took notes and they said, what we'll get back to you. And a week later, I get no phone call. There's no resolution, no sympathy. So now I'm, um, I'm agitated. So I call again. And they put me into this fellow's voicemail and I didn't know who he was at the time. And I left them pretty snarky voicemail. And literally, within within an hour or two, this fellow called me back and just so happens, this guy. I just landed in the right voicemail. This guy was the Chief of Staff for my congressman. And in fact, this fellow is a doctor. He's an MD. And he took up the cause. And he looked at the supply chain, he looked at what the hurdles are, and he looked at why, why the price is so high. And that that seed that I planted, became Matt's Act became our federal bill and it is a bipartisan bill. So you're not your congressman,

Scott Benner 14:52
after you made this phone call and you know, got it got the chief of staff and everybody starts thinking about this why he decided Did to write legislation and sponsored himself?

Rod Regalado 15:04
He did. Yes. He wrote they wrote the bill. And it is a bipartisan bill we so that that's really how it happened. They looked at the issues and why the insulin pricing is as it is, and and they found the mechanism that drives that price. And, and the reality is, it's the middlemen, the middlemen drive that price. Okay.

Scott Benner 15:31
So I guess for people who don't understand that terminology, so there's a pharmaceutical company, they they manufacture the insulin, there's you over here who needs the insulin? In the middle, there's an insurance company that you would think in the middle, there's an insurance company who has an agreement with, you know, I don't know how much of this people understand there's formularies that, you know, the the insurance companies say, well, we'll pay this much money for the insulin. I know, if I'm understanding it correctly, then the insulin manufacturers kind of set up the pricing. So that the formula, they're thinking about insured people when they're setting up this pricing. Correct, right. And I think part of how they do it, then the problem becomes that if you're not one of these insured people, the price is set up super high. And you don't I mean, like it's it's all to me, it seems like a dice game, so that everybody gets paid. And

Rod Regalado 16:29
it is yeah, right. Yeah, it's a game amante. It really is. Yeah, yeah. So basically, the way the system works right now, manufacturers produce this drug, which seven and a half, 8 million people have to consume daily. So in order for that product to reach the market, what they do, and what we're talking about is PBMs, pharmacy benefit managers, these are the middlemen, the pharmacy benefit managers negotiate between the manufacturers, and the insurance industry. And, and, and what they do is they say, well, we will place your insulin on the insurance formulary as a preferred drug. But in return, you guys, the manufacturers are going to give us rebates, rebates, you're not only going to give us rebates, but you're going to give us administrative fees. And so that jacks up the price and so these rebates, which is truly a trade secret, people don't know what those rebates look like, because they are trade secrets. It's not it's not disclosed. But if you don't, if the manufacturer does not pay the rebate, and the administrative fees, they are placed on a lower level on an insurance policy. So it might be a secondary or tertiary drug.

Scott Benner 17:59
And that's dangerous for them because then your doctor won't prescribe their drug because it's not covered by your insurance. Correct. Exactly. Right. Yeah, exactly. Right. Can't sell their stuff then. Okay.

Rod Regalado 18:09
That's exactly right. And, and not only that, but these pharmacy benefit managers also have a tremendous influence over the pharmacies, pharmacies, their pricing is set and if you don't charge your patients that retail price and they find out about it, they will cut you off. So they hold hostage the manufacturers and they hold hostage the the pharmacies and so you're saying

Scott Benner 18:41
that this is all set up so that the pharmacy benefit manager managers can make their money correct. And basically doing nothing but acting is like they're like the bag man. Right? They just they

Rod Regalado 18:55
truly are they truly are. They they are they are the they are the the dark people behind the curtain, pulling all the levers and they are they don't they don't package it any sexier. They don't make it any more potent or they don't get it to you faster. They do nothing but negotiate pricing between manufacturers, insurance and pharmacies they do nothing more than that. So

Scott Benner 19:21
how does this exist? At some point someone must have put legislation here's me guessing that years ago like oh, we need somebody to make sure everything's on the up and up so we'll put this this thing in place that and then it just they like everything else. People figure out how to game the system around good, etc. Yeah,

Rod Regalado 19:38
yeah. All I'm sure there is and surely Scott, I don't know how this thing was born. I know it goes back probably 2030 years and and I think the thought was if they have some middlemen negotiating the price, then the insurance companies would get a better return on on their negotiations. But in reality, what happened was, like you say, they figured out how to maximize their own profits. And they basically hijack the system. And that's truly what they did. It was truly

Scott Benner 20:13
any benefit that is there. Is it any good being done by a PBM? Or like, like for another drug maybe? Or like, is there I'm trying to imagine how something that's doing this can exist without somebody just going like, what we can't let this keep happening. So like, you don't I mean, does it do any good? Do you know that

Rod Regalado 20:30
that I can see no, no, truly, I can't. And I'm probably the wrong guy to ask that. Scott. Truly, I don't know. But it seems to me, if you look at the health care system as a whole. I mean, there's a reason why, you know, one in $7 is spent on health care in this country. Yeah. It and you got to think there's no way that these drugs cost that much to produce,

Scott Benner 20:55
it makes it makes you feel like it's entangled purposefully.

Rod Regalado 21:00
Sure. Oh, it's absolutely they've absolutely muddied the water. Yeah, absolutely. You can't have it at all. Yeah, I know, the average guy. I can't I can't make sense of it. But I do know, I do know, they hijacked the entire insulin industry. They did. So when they're getting away with it, what's

Scott Benner 21:19
the name of the bill that they put forth again?

Rod Regalado 21:21
Yeah, it's it's hr 4813. And it's, it's called Matt's act. Okay. 4813 is our bill number.

Scott Benner 21:31
And what does it do like, like layman's terms? What does the bill accomplish if it gets signed into law?

Rod Regalado 21:37
Sure. Yeah. So pretty easy. So basically, what we did was we, with the Congressman did was they looked at manufacturing costs, and they know what manufacturing costs are for insulin, because these manufacturers negotiate with the federal government, for Medicare and Medicaid, so they know what manufacturing costs are. So they looked at that. And they thought, Okay, well, we have to keep the manufacturers in business, because let's face it, they keep us alive. They keep us alive. Yeah. So they looked at that, and they said, Well, we know what manufacturing costs look like. We know what usual and customary markups look like. So they put a $60 cap, and that number is in flux, it might be $50 at the end of the day, and it might be 65. But that's roughly the number we're looking at. So if you are insulin dependent, and Matt's Act passes, that'll be your cost, if you are uninsured, and underinsured,

Scott Benner 22:41
and that's for your need, right, not for a file or a pen. So like if you're a person who needs a vial a month $50 If you're a person who needs three vials a month, $50 or no

Rod Regalado 22:50
$50. Okay. Yeah. What's your ever your prescription is? Whatever your purse? Yep. Yeah.

Scott Benner 22:55
And and this just covers people who are uninsured? What's the No, no,

Rod Regalado 23:00
no, our bill covers not only the uninsured, but the insured. So here's the genius of the bill. So if you have one of those high deductible plans, and let's say your deductible is, I don't know, let's say your deductible is $4,000. Well, you have to spend $4,000, before the insurance pays anything, anything. So you're you are going to pay the retail price, right until you hit 4000. The way mats Act works is if you have a high deductible, your out of pocket cost is zero. The assumption being you are paying that insurance company so much money, they will that they are going to carry the burden. They will your cost is zero. Yeah. And if you have run of the mill, average, everyday insurance, like most people, your cost is 2020 bucks. So if your copay is 15 bucks, it's 15 it co pays 25 Well, that's, you know, that's that's 25 bucks. Yeah,

Scott Benner 23:54
but there's no situation where it's suddenly $2,000 If you know you're right, if you'd need a ton of it's I'll tell you, I looked at your numbers that you're that you're touting here I have it is as of 2018 1.4 million T one 6.9 million T twos. That's, um, that's astounding. Okay, so now this thing gets written it Listen, what I know about this, you could fit in a thimble, but the way you're explaining it makes sense to me. I have the heart of a liberal person, you know, and I don't think that your healthcare should bankrupt you or or cause you to have to find 1000s of dollars a year that you don't have, right or you know, to go down a different road for a second Rob, even if you come up with the five grand like you said you're taking from somewhere to pay for this, right? And so maybe today it feels like you're getting away from it, or getting away with it, but But How old are you?

Rod Regalado 24:52
I'm 57 Okay, so 57 years

Scott Benner 24:55
old, let's say 20 years from now. Rods not walking so well or not remember things so well and his kids have to put him into some sort of a home. And now because rod wasn't able to save money, he's stuck with a Medicaid or Medicare system. And now he's in a subpar place. And at some point, at some point, this chicken comes home to roost, like you might be able to, like, push it off for a while and get your son his insulin, you know, you or somebody else, but at some point in your life, this is going to make an impact. And I think it's easy for people to think well, like drive a cheaper car, don't smoke cigarettes, you know, whatever your lifestyle choices are, which is, is a reasonable statement. But I'm saying at some point, it comes back to get you 10 years $5,000 $50,000. Yeah, 20 years is $100,000 out of pocket. And just because you can come up with five grand a year, doesn't like my daughter was diagnosed at two. So I mean, hold on a second, I'll do this. I'll play this with you for a second if my daughter is diagnosed at two. And I think they I think that women live to like 84 on the national average. So at two years times $5,000. This is assuming it doesn't go up, which of course it would, in a lifetime, at $5,000. A year at a lifetime. $410,000 at $5,000 a year.

Rod Regalado 26:22
Yeah. And that And that's assuming you don't go to the hospital and suffer DKA. So think about this got. So let's say, because let's face it, one in four Americans one in four every single day rations their insulin because they cannot afford it. And so what happens, they can't afford the insulin. So they go into diabetic ketoacidosis. They take them to the hospital, they treat them for two or three days. And then they discharged him with a 20 or $30,000 invoice, well, they couldn't afford the insulin on the front end. Right. So what makes you think they can afford that invoice you just handed him. And now Now you came up with a half a million dollars basically over a lifetime for insulin, insulin only. Now now add up how many times you have to go see the endocrinologist just for your routine checkups. That's not free,

Scott Benner 27:14
yet doesn't have to be that harsh. He didn't even have to go into DK, what if you're just carrying a heavier a one C than you should be. And when you're 30, you start running into health issues, those health issues are going to cost way more to the system, like so there's no common sense. And I listen, I'm with you. Like I said like I am a I'm a person who looks at things and I try to make sense of them. So if $5,000 a year aggregates out over two to $410,000 $500,000 a year or in a lifetime, and a couple of hospital stays is going to equal that number anyway. Well, then I the only thing I can think of and here's where I want to play devil's advocate for a minute is are the people who pull the strings on this, like, what don't I understand about an economy? Like, I hate to say this, but if people weren't sick, what our economy fold, like are they're like Machiavellian lunatics pulling strings going, listen, some people get sick, they have to buy medicine. And if they do, then that, you know, keeps a pharma company in business. And then pharma company makes advancements and maybe we learn about things. 50 years? Like, I mean, is there like a big picture that I can't wrap my head around?

Rod Regalado 28:32
Oh, no, no, I don't know. I think you're monitoring capsulated perfect. Yeah, it's money. It's funny, because because if it really was about people and lives and the economy in general, if that was a true statement, then then then there's no reason that they can't sell insulin to keep people healthy rather than watch them rational. And there's a reason believe me there is a reason that the manufacturers are offering coupons. There is a reason because because they know, but it's the middlemen again, you're going right I'm going right back to the guys that are pulling the levers. These like you say the Mac of alien dragons that are between the manufacturers and the patients. Those people only care about profits keeping only care about profit and it's a sad day. It's truly a sad day that America has allowed this to manifest itself as it has over the last 1020 years so I could its present. I

Scott Benner 29:36
could sit here broad off the top of my head and I haven't given a deep thought to it but I could sit here and paint you a picture where we need the machine to grind because if the machine grinds we make advancements we learn about different things. You know, if if if there and I am a person who who fundamentally believes that people get up and go to work in the morning to get paid. Yeah, so brilliant people, you know, I mean to I'm going to make a point and then I'm going to come around to it. So if I'm in college, or I'm getting ready to go to college, and I'm a truly brilliant person, and I look at the at the world, and I say, Okay, well, my goal is to make money, let's say, That's my goal. What, what, what form of work am I going to go into where I can do good, exceed my expectations for myself, personally, make a comfortable living, raise my own family, maybe go on a vacation sometime, buy a nice car, you know, save some money, etc, etc, like, chase my dream, and move the world forward. That's just a hopeful thing that a bright person might do that, right. And so and so when you have that person who spends for eight years being educated, you know, a master's and I'm listening, we could make an argument right now that it shouldn't cost hundreds of 1000s of dollars to get quality education like that, but it does. And so I come out of school 345 $100,000 in debt, and now I need to make $200,000 a year at the minimum, or I'm going to be screwed. And this company now needs to pay me because I am the best and the brightest. Someone's got to pay for that everyone needs to make money, the company needs to make money. Like when the machine grinds like that. It does benefit humanity. It doesn't benefit someone at home without insurance who needs insulin. And when I but I have to believe that there's a way to bank the machine grind without grinding people up as its fuel. Like like, Can't there be a there's gotta be a middle ground? And you think Well, Bill does that right? Like it? Fine. They make money still. And we get insulin?

Rod Regalado 31:40
Yes. Yeah, I know, without a shadow of a doubt. And we know this because these manufacturers, here's the interesting thing. We know what manufacturing costs look like? Okay, because these these companies negotiate with the federal government for Medicare, Medicaid, right? We know what, what their, what the manufacturing costs look like. So when you take and I'll just going to throw a random number out there, but it's fairly close. Let's say manufacturing costs plus usual and customary markups. Let's say that number is 20 bucks. And that and that's fairly close. It's probably maybe 22 or 2418, whatever, right? So when that product leaves the factory floor and arrives at the pharmacy, suddenly the price is 600 or $700. Right? Now, I have no problem with these manufacturers making a profit, they have to make a profit because they're going to manufacture new drugs, new, they're going to discover new things that makes humanity better. But when the system's hijacked, as it is now, no one benefits except those middlemen. Now, think about this, Scott. So let's say you, you come from a family where you can go to college, and you can get a master's degree and you have the liberty and your genius, and you can rack up a half a million dollar debt. Think about the kids who come from families like ours, where I don't have the liberty to put away 500 bucks a month. Yeah, so my son, my son is already disadvantaged, because I can't put away that kind of money. Right. So So what about what about those kids that we push them to the side and saying, yeah, sorry. No bad luck for you.

Scott Benner 33:37
Yeah. So I'll make the I'll make the alternative argument, because there's only two of us here. But everyone, as I'm saying this, I don't think this just please, I don't feel this way. Yeah, who says everybody gets to succeed?

Rod Regalado 33:52
Yeah, right. No, it's a fair question. Yeah. Nobody, nobody says, I mean, ultimately, at the end of the day, you truly are responsible for yourself. Yeah, but I believe I believe humanity's generally good I really do I believe that

Scott Benner 34:08
I do too. I think that people generally want good for each other. I do think that there's a study that shows that they want good for each other as long as it doesn't come from them. So there's I forget what the question system is you can ask people like these three questions about what they would give to someone else. And it's a it's interesting like they'd give you no, it has to do with what you have like would you give someone the shirt off your back? Yes, because I have more shirts. Would you give somebody this no because I don't have more of that like there's a there's a way the it listen to read it's got to be a survival instinct right like I can I can part with this and still be okay but I mean I so I don't disagree with you like I think if if some broke ass kid somewhere is brilliant and doesn't have the the opportunity to stretch his his legs and and figure out what he can do in the world. That's a shame. And and it should, it shouldn't be that way. I also think you're going to get hit with people who say, Well, why do you get to tell me how much I charge for the thing I make if you don't like it, start a pharmaceutical company and make your own insulin. That's what we did. Like that. You know what I mean? Like, that's gonna be the, the kosher to some to some real hardcore capitalists, they don't hear I'm rationing my insulin, and I'm sick. And it's going to shorten my life. They here, I started a company, I made a thing. You have no idea what the the risk that I went to, to start this thing. But I could also argue that away and say that these companies have been around so long that the people who put their who put their ass in the game are long gone now.

Rod Regalado 35:44
Right. But you all also have to be aware, and I'm sure you you know this. But one of the things that, and I'm not going to knock the manufacturers I mean, they are running a business. But one of the tricks that they've they've utilized over years past is they change the they change on a molecular level, they'll change the product, so as to extend their patents. And there is a reason why there's only three manufacturers, because because there are no generics. But if you want to talk about the economics of, of manufacturing drugs, that and and I have no problem with patents. I mean, these companies invest billions of dollars to manufacture these drugs. And they should be rewarded for it. But no problem with that.

Scott Benner 36:31
But but some of these Nazi insulins they've made their money a

Rod Regalado 36:34
million times over a million times. Yes, yes. Yeah. It's obscene.

Scott Benner 36:38
And so they're protecting their patents by changing. I do know that they'll they'll change the molecule a little bit to get reprinted. And then that that starts the process over again. Yeah, they'll and then they'll kind of like legacy out the older insulin so it's not available. And now you're now there. Now they hold their they their protect right back now. Right. But yeah, but

Rod Regalado 36:59
just because it's legal, just because it's legal doesn't make it moral, right? Because really, they haven't really changed if they've changed one molecule, right? And you're going to try and tell me that just because you change this tiny little molecule that you should get a patent extension for another? What is it seven years? 10? I don't know. I

Scott Benner 37:18
don't want long enough time to come up with another molecule.

Rod Regalado 37:20
I bet. Plenty of time. Yeah, sure.

Scott Benner 37:23
And so again, arguing the other side of it. It isn't moral. And I really I agree with you like I mean, if obviously, if money. Well see, I also think it's an oversimplification to say money, because I also think they're protecting the business. I think they're trying to stay in business long term. Like, I come from a completely bizarre perspective on this, because I have this podcast and anybody who listens to me knows that my heart and soul is in this and 100%. But my wife also went to college to be a doctor, and for personal reasons, couldn't go to medical school, and got a job at a pharmaceutical company, 21 years old, coming out of college, and is still at a pharmaceutical company, my wife is brilliant. And she and for anyone listening, believe this works her ass into the ground every day. And I know it might be hard to think of like a desk job is hard. My wife's job is intellectually past, intellectually, tasks her in a way that leaves her exhausted every day. Sure, this COVID thing sat in my dining room for 18 hours a day making sure that one of the COVID vaccines was going to be safe. My wife is the kind of person you want, looking at stuff like this, and making decisions like this. And those people are not a dime a dozen. And so you don't I mean, and so in so take all this out of it for a second take out insurance and all the horribleness that this is she's a person who has children, she has a home, she's trying to send her kids to college, she is putting an honest effort into something that she took years to understand. She wants to be compensated for it in a fair way. And she'd like to go on vacation once in a while. And I will show you from a personal perspective. If I had to bet $50 Right now, my wife's going to drop dead at a desk from a heart attack one day and there's no one listening to it. Well, Trump but listen, I'm telling you how how hard the job is and how hard she works and how stressful it is. And my point is that no one is going to remember her and that she's not the only person who does that. So I listen. Is there a CEO at the top of a company whose you know, Third Mistress is driving around in a Maserati that I paid for with insulin? Maybe? Right? Is that good? No, but you can't be mad at my wife about it or people like her who were actually in in the in they're trying to do good if you met those people they are you.

Rod Regalado 39:52
Oh, I know. I have I harbor no illusion about oh, no, I know. And that's and that's the investment. That's the investment that these guys companies make, they see the value of these employees. Because every day they go to work, trying to find some breakthrough. That's their job. That's what they're good at. They're geniuses. They're brilliant. And they can't do that

Scott Benner 40:15
their brains work in a different way. I don't I can't do eight how people like that think and most of us can. I also want to say not that I feel like I have to, but my wife's company doesn't make insulin. So I feel a little unencumbered, like giving a bigger picture from there. But she has worked for a company in the past that does, and then I can tell you that while she worked there having a daughter with type one diabetes, she felt extra fulfilled at her job. Yeah, and, and even moving forward. Now. There are you know, the the workers in pharma companies, they rely on each other. Like, there's, there's these meetings that they have, I don't know enough about them to be thoughtful about them. But my wife is involved in a meeting where like, people from different pharma companies get together and just talk about problems they're having or ideas and try to how to solve things. And the amount of times that I've heard my wife on calls, helping people make better decisions about helping people with diabetes, even there's value in that now, all of this is nice, and it doesn't change what you're saying. And it doesn't make it very true that there's no morality to charging somebody $5,000 a year to stay alive. I'm just trying to paint a picture that the way the world works, is so entangled, that I'm so concerned that pulling one thread, you can't fix anything but I love the idea of what you're trying to do. So my question is is how do we like what happened to the build it stall? What does it need? Why are you here?

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Rod Regalado 44:51
No, the bill has not stalled. Um, but basically so I make I make phone calls every single day every day. And I collaborate with diabetic advocacy groups. Shout out to touch by type one, by the way. And, and I work with these people daily, I make these phone calls and emails daily. And the the challenge that I see all the time is that most, well, virtually all of the time I call a congressional office and they're completely unaware of the bill, you have to understand these people have so much on their plate, their local constituents are calling about this, and that they have their own issues within their district. So they're not necessarily, let's face it, there are 1000s of bills that are introduced every year, these congressmen and senators are not going to know that this bill exists. And that's the challenge. And that's why I reached out to you, Scott, because I don't want this bill to die in the middle of the night. So

Scott Benner 45:57
how do you stop that from happening? Because I'm so scared that what you're gonna say is it's money, but it's maybe it's no, no, no,

Rod Regalado 46:02
no, no, no, no, it's not money. No, no. It money helps. But no, it's not money. No, what all I would ask is for all of your listeners, just take a look at Matt's act, it's 4813. Just look at the bill. See what it does. It's a very simple bill. It's not like most bills that are introduced these days are 1000s of pages long and reams and reams of paper. Mats act as 16 pages only deals with insulin and pricing. And it has safety nets in there to make sure that we're not jobbed and hosed. At some point down the road. There are safety measures in place. And I would just ask that you call your congressman, and ask them to at least look at hr 4813. And look at the merit of the bill. You either like it or don't like it in something my grandfather said to me when I was just a young boy. If my nickname was rabbit, he called me rabbit. He said rabbit, if you don't ask the question, they can't say no. But occasionally, they'll say yes. I'm just asking that people look at the bill, call their congressmen and ask them if they wouldn't mind. CO sponsoring the bill. Now, the one thing I'm hearing from a lot of congressional offices and Senators, is that now we're supporting HR three, which is fine. HR three is a large bill where they want to renegotiate drug pricing, I think it's top 150 drugs or something like that. I don't really know. But what I do know is that these two bills are not mutually exclusive. HR three is fine. But HR three capstar crisis renegotiates drug prices, only as it applies to Medicaid and Medicare.

Scott Benner 47:56
So if someone said that to you, you could say listen, there's no reason you can't support 4813 and three at the same time.

Rod Regalado 48:02
Exactly right. Exactly right. 4813 covers every single insulin dependent American HR three fine idea only applies to you if you're on Medicare or Medicaid. Yeah, in other words, leaves everyone else

Scott Benner 48:19
out. Okay. And it's about more. It's like a top, you said a certain number of drugs, which probably makes it even more difficult to push through.

Rod Regalado 48:27
Right, right. So yeah, and so that was the other thing we looked at. We tried to keep this thing as streamlined as possible. Only insulin. There are no writers on this thing. There are no backdoor deals. There's it's a very simple read. It's 16 pages.

Scott Benner 48:42
So can I ask you one? Can I ask you a like an inside baseball question about the policy? The political side of this is? Sure. Are there enough? Congressmen, Congress people, Congress, women, Congress, this congress people? Yeah. What happens when you get old rocks? Are there enough? Are there enough congress people who don't take money from Pharmo? Who would feel okay, putting their name on this?

Rod Regalado 49:08
Oh, that's an interesting question. Um, well, I can tell you this. I can tell you this. So the it maybe you know, this, maybe you don't, the largest the single largest caucus in Capitol in the nation's capitol. Is the congressional diabetes caucus. Yeah, it is the single largest caucus in in Washington, DC, over 300 members of the House are part of that caucus. So they might be taking money from big pharma and insurance industry. PBMs. Who knows?

Scott Benner 49:48
Yeah, they all have to have a lot. I mean, the PBMs have to have a lobbyist on top of lobbyists. You would think of course they do. They ran out of money. So

Rod Regalado 49:56
yeah, they got to protect that. That goose that laid the golden egg they got to protect But my point is 300 plus members are in the diabetes caucus. And I would suggest they don't know about the bill, because I will give them the benefit of the doubt. They just don't know about the bill. But if they did know about the bill, maybe just maybe they'll say, yes.

Scott Benner 50:20
I'm kind of hoping that a handful of attorneys who do lobbying work have kids with type one diabetes are listening. Yeah, I mean, I think that's, I mean, I hate to say that, but I think the way that Washington is set up is this is it, right? Like, you know, what you see on the news is what happens at the very end, it's how, you know, it's been scrubbed 1000 times, the way it gets scrubbed, is by is by powerful people who represent more people. Yeah, of usually of power, getting together in a room and making a decision. And then then they're telling these congress people, this one's okay to vote for this one isn't like, yeah, that's

Rod Regalado 50:56
that. Yeah, that's exactly true. That that is, that is a sad reality of Washington, DC it is. But I think there's enough people of goodwill in, in the Congress that would look at this and say, you know, I like this, and I can also share this with you. The, the leadership, the Democratic leadership, they presented this bill to them last year, and they liked the bill. They did like it. But, you know, we're fighting COVID, the election, the Trump impeachment, the, you know, all sorts of nonsense was going on, and it was just lost in the ether. Um, but now things have calmed down somewhat. depends on your perspective, I suppose. But, but I think now is a is a perfect time to resurrect this and just say, Listen, there's 300 of you guys that are part of the diabetes caucus. And where have you been for the last 20 years when the price went through the roof?

Scott Benner 51:57
So maybe the caucus? Is it possible that the caucus isn't focused on the same things that you wish they were?

Rod Regalado 52:03
Yes, yeah. Yeah, absolutely. Yeah, absolutely true. So

Scott Benner 52:08
is it is the is the real hope here that everyone listening calls their congressperson and just simply says, I would like you to can take a look at hr 4813. It's called Matt's act. It's about making insulin affordable for people. It's a very simple bill 16 pages, take your five minutes to read it. This would mean a lot to my family, give them a half a second, a personal like, my son has type one, my daughter as type one, we're afraid we're not gonna be able to send our kids to college, we're afraid we're not going to be able to retire. We're afraid that we're going to die one day and our kids aren't going to be able to take care of themselves, whatever your truth is, share that with them. And just reiterate, please take a look at 4813

Rod Regalado 52:51
That's all I'm asking. That's all I'm asking. You know, and and I can I can I plug up a website. I created a Facebook group I started Yeah, sure. Good. Yeah. So so you can find us at insulin matters that calm. So it's www dot insulin dash matters calm, or the Facebook group under the same name, insulin matters. And I do have a letter that I posted on there, you can just download it, click on this link, it'll give you just plug in your zip code. And based on that zip code, it'll tell you who your congressman is. And you send that letter off and you can wordsmith it any way you like. But more than anything, just call your congressman and ask them to support 4813. And if they push back and say, Well, we're supporting HR three, just point out they're not mutually exclusive. They truly aren't.

Scott Benner 53:51
Right? Insulin matters. Ma TT ers.com That's it when I get there. Am I seeing blue and gray? Yeah, welcome to insulin matters a practical approach to Basal insulin management. Oh, no, no, no. What am I Sir

Rod Regalado 54:06
It's insulin matters be the difference.

Scott Benner 54:09
Insulin matters

Rod Regalado 54:11
Yeah, it'll it should pop up. Let me just see like the insulin different insulin douche matters. Calm the dash. That's yeah, little dash in there.

Scott Benner 54:21
Everybody rods in his 50s he don't know. I'm just trying to help

Rod Regalado 54:25
you. I'm a dinosaur. I'm a dinosaur.

Scott Benner 54:28
Alright, now I'm here. Insulin dash matters.com Yeah, that sounds Yeah, we need you need a tiny bit of a media prep there rod don't you? You spent this whole hour doing such a good job. Explain that you send us your website for insulin. Yeah, no. Don't worry about insulin dash matters calm as soon as it pops up. There's a cute kid here and it says support Bill HR for 13 Mad sack right at the top. Okay, so And there, I'm going to learn how to what do I click on to figure out how to find your letter?

Rod Regalado 55:07
Yeah. So if you scroll down just a little bit, probably about the middle of the body of the

Scott Benner 55:11
page. I say it man attack letter and find your representative.

Rod Regalado 55:15
Yep. And that's it. Okay. It's was that Yeah. All right, right. So yeah, I mean, I'm not truly I'm not looking for money. I'm not the letter and a phone call means way more to me, simply because that's how I got a bill. I made a phone call. And I don't I don't have any rich uncle's. I don't know, famous people. I don't know, my congressman. I simply made a phone call.

Scott Benner 55:39
Right. Let me ask you something just for clarity. Excuse me, I believe I know. Oh, I'm dying. This is the end. Let me get a sip. My tea guy called messed everything up. Um, you're not you're not making an income off of this. Right?

Rod Regalado 55:54
Nothing? Not a penny. Nothing. Absolutely nothing. It's

Scott Benner 55:56
just It's I don't believe you are. But I did see a donate button. So I just wanted you to be Yeah, people. So yeah,

Rod Regalado 56:03
right. Right. Well, the intention. Yeah, the intention is to whatever donations come in. Um, when I'm going to do with it is I'm going to buy ad space on like Facebook and Spotify just to promote the bill, just like 15 Second 32nd ad space, that nothing more than that. And if the bill makes it through, then I'm just going to donate the rest of the money to some, you know, 501 c three that gives out insulin or insulin. ancillaries. And there you go.

Scott Benner 56:36
Cool. Well, I appreciate you coming on and talking. Is there anything that we haven't talked about that you think we should have?

Rod Regalado 56:42
Oh, no, nothing comes to mind. I

Scott Benner 56:48
do a good job of arguing the other side without sounding like,

Rod Regalado 56:52
you know, what is that? You know, that's truly a lost art, Scott, you know, people, people can have disagreements, and they don't have to be so disagreeable. You've got your personal opinion, I got my personal opinion. You know, there's always middle ground. And there's I love I love having conversations, where I can disagree with someone, I can illustrate my point of view and illustrate your point of view. I think conversation is so fun. Yes, I

Scott Benner 57:17
enjoy talking. I also didn't like I mean, listen, I agree with a lot of the stuff you said. So I was I have a lot of arguments to be honest with you. But I do know that people could hear it and feel that way. And I think it's important not to disregard that. That's how people feel like, I know that you can take a moral high ground and say, Look, we're talking about insulin is people's health, money shouldn't matter. Well, that's all well and good. But you know, what matters to all the people who are making a living and feeding their kids off of the stuff that they're selling like? So you. What I am always reminded of is, is that there are a number of people who have contacted me over the years. And sometimes they want to come on the podcast talk about this. There's one person that sticks out in my mind. And this person, you know, I spoke to them on the phone, and I said, but you want to come on the podcast, what about? Well, in some pricings not fair. And I was like, oh, it's not like you have a fix for it. And she's, she says yes, you know, they should make it cheaper. And I was like, well, that doesn't sound very reasonable. You're going to go to a bunch of wealthy board members of a company and tell them to give their stuff away for less money, right? Like, is that how things have? You've noticed them working so far in your lifetime? You know, asking people about their better angels is. I mean, that's, I mean, I saw her in Brockovich. But other than that, I haven't seen it happen anywhere else, you know, in my life. Yeah, you're

Rod Regalado 58:34
exactly right. Yeah, there's one thing to bring a problem to the table. But if you have a problem, bring a solution, or at least bring an idea. Yeah. And this

Scott Benner 58:43
person then told me that it was listen, at its base, I understood that the context, they said, well, they spend so much money on advertising to get us to buy their products. And I was like, okay, and I was like, let me see where this is going. So if they just got rid of their public relations department and stopped buying ads, they could put that money towards the the cost the incident, I said, Well, that makes sense. I said, What do all the people do who work in their public relations department when they fire them? And they can't pay their bills anymore? Like, what if some of those people have diabetes, and now they can't afford their insulin? And I was like, are we just taking the money from here and putting it over there? Is it like Robin Hood, you know, stole from the rich and gave to the poor? And I know that that's what you think you're doing except the people who run the company aren't going to lose a nickel. When this happens. They're going to fire the guy that fixes the copier. You know what I mean? Like, that's the money doesn't just they don't give the money away. The money comes from somewhere. So your idea in a perfect world sounds delightful. But that isn't how it would end up working.

Rod Regalado 59:49
So utopian idea. Yeah, no.

Scott Benner 59:51
So if you're going to come at these problems, it's just my intention to say come at them with a real answer. And and to me, yours yours comes close. Because, I mean, there's can't be anybody in the world that has a soft spot for a pharmacy benefits manager. Except Except I gotta say, the pharmacy benefits manager who probably enjoys the island they live on. And which is, by the way, how I don't know if I've ever said this in the podcast. That's how I think of Pharmacy Benefits managers as big fat people sitting on an island at the top of a throne. laughing as the pennies that they take out of your dollars just keep falling into a pile. Yeah, it's

Rod Regalado 1:00:32
Yeah, yeah. It's hard. It's hard to say because you have to pull the curtain back to see what they look like. Yeah. Because they they are some shadowy characters.

Scott Benner 1:00:41
Well, I'm just saying that's how my mind mission Yeah, right on the same page got same page. But my expectation is, is that if I was a big, fat slob and leave rich person who was taken pennies out of out of sick people's pockets, left and right, I wouldn't care much about them. Because if I was I wouldn't have gotten to this space to begin with. So now we're about to have a formidable fight with a person who does not want to lose has a lot of incentive not to lose, and doesn't particularly care how they win is what That's right. Lactation,

Rod Regalado 1:01:12
you know, you know, you're exactly right. And that fight will come. I harbored no illusion, I know that fight will come. They will bring the big dogs, the lobbyists, the lawyers, the character assassins, they will all come knocking. sure of it. Well,

Scott Benner 1:01:29
I applaud you for one to be in front of that. Because I think that of all of the things that you just described that it can be scary that the character assassinations are so common in in, I mean, now that the internet's here, just so easy to just make up a lie about somebody, right? And so to want to be out in front of that is really brave, maybe you're not knowing what to put the dash in your URL is just just the amount of ignorance you need to get into this fight.

Rod Regalado 1:01:56
You know, I'm an old Marine, I am an old Marine. And really, I don't care. I'm too old in my life. And this isn't about me. Yeah, this, it was about Matthew. And now you know, it's about 8 million Americans, they can character assassinate me all they want. I don't care. If they can't kill me an evening,

Scott Benner 1:02:19
I can't yet I appreciate so much that you're that you're willing to do this and that you try this. I have to imagine that there was a moment, the beginning of where you just thought like, well, this isn't what I wanted. Like, I don't like I mean, this wasn't something you were looking to do, right?

Rod Regalado 1:02:31
It No, no, no, no, not at all. No looking back. Exactly. Yeah, but you know, you know, diabetes is an equal opportunity hater. It doesn't care. If you're on the right side of the aisle or the left side, it doesn't care if you're black or white. It doesn't care if you're rich or poor. Or if you're Jewish, or you're Catholic. It does not care. And it will make your life miserable. But it'll break you financially and emotionally. First,

Scott Benner 1:03:03
I have to ask you, this whole thing you want people to do make a phone call, send a letter? How much do you think of their time takes them to to accomplish that? Less than an hour? No, oh,

Rod Regalado 1:03:12
God, no, no. 15 minutes, 15 minutes to download the letter. It'll take you a couple of clicks. On the long end, it might take five minutes, okay to make a phone call. And I would just encourage your listeners. If you download the letter, ask him for a response. Ask them to call you back and tell you why they don't want to support the bill. Okay, I put him on the spot. Absolutely. I don't I don't want to shame any of those congressmen or senators. I don't want to shame them. I just want a fair hearing. Yeah, this is America give us a fair hearing.

Scott Benner 1:03:47
I think you'd be surprised to how little it takes to make something look like a wave. I say stuff like this all the time. And I don't know if people believe me or not. But honestly, if everyone who heard this did it, it would actually make an impact. The problem is, is that you're not going to do it. Not not in you know, I mean, listen, as a person who gets on here and says, Hey, if you want to support the podcast, you know, go go to here and just fill out this survey. For me. It's a survey that doesn't ask super personal questions. It's HIPAA compliant. Like I tell people all the time, you'll really support the podcast, and it'll take you 10 minutes. And it's surprising how often you have to say that just to get a small number of people to do it. You

Rod Regalado 1:04:30
know, it's not surprising to me at all. It truly Scott I literally every single day. So I work all day. I come home, they can dinner, maybe the laundry in and I jumped on the computer and I'll do a little bit of work. When am I driving home? I'll call this congressman or that Congressman. I call famous people I might make literally, I might make 50 phone calls. And I'll get two people to call me back. Right?

Scott Benner 1:04:58
Well, yeah, that's it. Listen, if you're, you know, if you're making that phone call, just tell people tell them say, look, I heard about it on a podcast, because they might you don't know like that, that feels very viral to people. And you know, you could give them the feeling of like, Oh, these we got to get out in front of this before more people call like, I want to be on the right. Because I mean, they're politicians, right? They just want to be on the right side of the argument. And for them the right side is you being happy. So you vote for them. It's

Rod Regalado 1:05:25
right. And let's face this got this is the right thing. Yeah. I mean,

Scott Benner 1:05:30
it has the added benefit of actually being a good thing

Rod Regalado 1:05:33
is a good thing. Yeah. There's, it's no coincidence that 300 Plus members of Congress are part of the congressional diabetes caucus, right? It's no coincidence. Now. It's time for them to do something.

Scott Benner 1:05:47
Do you know how many people you have signed on to Matt's acts so far? To two okay. And then what do you need to push it forward? Do you think

Rod Regalado 1:05:56
we need yes, we need a hearing. So the way the bill way a bill works, it's introduced, oftentimes, it's introduced by just one congressman, our bill is bipartisan. We have Angie Craig is our co sponsor, Democrat. Fortenberry is, is the author of the bill Republican. So the way it works is it has to go through a hearing a committee hearing, and in our case, it has to go through energy and commerce. And I know that sounds kind of weird, but it's energy and commerce because of interstate logs. Interstate Commerce loans. So once it goes through that hearing that committee, they'll vote it up or down. If they if they voted up, then it goes to the Health Committee, and the health committee will vote it up or down. And then once that happens, then it goes to the floor for a vote on the House floor. Yeah. After that, then it goes to the Senate. And the same thing happens to

Scott Benner 1:06:54
wow, okay, well, yeah, listen, it sounds like an uphill battle. But I appreciate that, when you're willing to fight. I hope that you're, you know, normally talk to people about their diabetes. So I hope your son's doing well.

Rod Regalado 1:07:06
He has thanks for asking.

Scott Benner 1:07:08
And was it a big? I mean, have you made the, you know, the adjustment, or is it still hard for you the diabetes?

Rod Regalado 1:07:16
Yeah, well, I'll tell you, man, you know, out of the gate, it was hard for us to find our sea legs is such everything was just kind of upside down, counting carbs and measuring. And, you know, we, we found our pace and so now it's almost second nature. You know, Matt, last night we had the pot roast and mashed potatoes and homemade mashed potatoes and gravy and, and we just know, okay, that dollop of mashed potatoes has X number of carbs in it, and he just knows off the top of his head, how many units he has to take so so it's actually a lot easier. But the the I've noticed recently the one thing that he's struggling with is emotionally it's difficult because you know, he's an athlete, he loves playing sports and he couldn't wear he couldn't want to pump so can't play football where pump had couldn't wear his Dexcom sensor because football the rip that thing off. So back to finger sticks. And, and it's just the whole sports thing, just

Scott Benner 1:08:26
right, you should jump on, you should drop on to my private Facebook group and talk to people there because there are wraps that you can put around Dexcom that make it almost impossible for them to be grabbed and ripped off. There are people playing football with them. And you could he could move to an insulin pump that's tubeless that might do similar things like that make things easier for him. So there's they're sometimes they're not that I'm not disregarding anything you just said. But I don't think you should give up. I think you should just ask other people how they do it because it is giving it I will Yeah,

Rod Regalado 1:08:58
I will. I will. It really took a toll on me. Yeah, he struggled with that. He struggled with

Scott Benner 1:09:03
that. So can imagine. Oh, it's terrible. I'm so sorry. Any other autoimmune in your family?

Rod Regalado 1:09:10
No feeling no thyroid? That kind of snow? Nothing? No, no, we're just old English, Irish, Dutch, Indian. You know, typical American mutts

Scott Benner 1:09:24
English Irish. There's a lot of I see a lot of autoimmune. We and people. English Irish. Yeah, that say that. That's their background. There's a big swath of Nordic people in Minnesota who who are impacted my wife's lineage is Irish English. Like I think there's something to that. I think taking the potatoes from those people for that long really messed them up or making me sorry, I'm sorry, making them eat potatoes for that

Rod Regalado 1:09:47
long. It could be truth. Brought Listen, I'm not a doctor. It could be the solution to my weight problem.

Scott Benner 1:09:56
Get those potatoes out of your diet. Well, I I just can't tell you how much I appreciate this or how well I thought you articulated this the the whole thing today, I really do appreciate your time.

Rod Regalado 1:10:07
Well, Scott, you know, I, again, I can't thank you enough for you know, lending me your megaphone, because without without folks like you, this message just doesn't get out. People don't know what they don't know. And it's not their fault. It's not because they're ignoring us. They just don't know. Yeah. So for what it's worth, Thanks for lending me the soapbox and your megaphone. And

Scott Benner 1:10:30
it's my pleasure, I would I would add this for anybody listening who's who's, you know, thinking about doing this is if you're listening and you really don't feel like this impacts you, right? I have insurance, I pay $20 a month, I don't even know how much insurance or insulin cost whatever it is, you're thinking, you know, right now, it doesn't hurt you. It's no skin off, you're asked to make this phone call. You know what I mean? Like, just send the letter, make the phone call, push people in that direction, you know, you'll feel good about yourself. At the very least you'll do something good, which is a bonus. And because I know how hard it is to take these earphones out now and be focused on something when your life is difficult. That doesn't impact you. But man, it could one day, uh, you know, just because you're successful doesn't mean your kid's gonna be, you know, bit when Billy's 35. And you're in a home and he doesn't have a good job. You might wish you sent this letter, you know? Because this isn't going to get better on its own. Like, I am a firm believer in capitalism. I don't think there's anything wrong with it. But this is the other side of that, which is you. It is hard to make change around stuff like this. And it really isn't. It really isn't going to happen until people get together in a group. And it I mean, look at the number what's the number how many people use insulin,

Rod Regalado 1:11:43
about seven and a half million, seven and a half million every single day. And one in four rations? Yeah, every day.

Scott Benner 1:11:50
So if you want to see the power of democracy, you put seven and a half million people send them a letter or making a phone call. And instead we'll be free tomorrow. Yeah, that's, that's yeah, that's the truth. It'll be it'll be affordable. Put

Rod Regalado 1:12:03
it that way. Yeah, right. Yeah. Free. Nothing's really affordable. And and you can afford the college fund and retirement fund. Yeah. Wouldn't it be nice to know when was the last time you gave yourself a $5,000? Well, let's say let's say you have a high Well, let's say you have regular insurance. 20 bucks a month. So now you're spending $240 a year as opposed to maybe, I don't know. 2000? was the last time you gave yourself a raise of couple 1000 bucks.

Scott Benner 1:12:31
Yeah, I think the problem is, is that I think part of how the part of the problem about how people think about money is because we're segmented into months. And because if you I make this much money, and this percentage of my money goes out the door, and this is what I expect. No one ever does the you know, I mean, like, Let's take something that everybody has the cell phone, right? So you know, how many kids are in your family? Right?

Rod Regalado 1:12:56
Two, and then two plus a foreign exchange student so I got three. How

Scott Benner 1:13:00
many cell phones? Are you paying for a month? Oh, four, four. Do you have any idea what your cell phone bill was?

Rod Regalado 1:13:07
Oh, God. Ah, I don't because it comes right out. Um, I would suspect it's a couple 100 bucks. Yeah, my God. Yeah.

Scott Benner 1:13:13
So that's one of those things. Let's just say you're you have a I don't know, the two or $300 bill, it doesn't matter what it is. You pay $300 a month. He's like, Oh, I can afford that. That's fine. And then every year it's $3,600. And God, it's only $3,600 not really a big deal. I can come up with $3,600 a year. Don't worry about it. It's really important to me. 10 years of that $36,000.10 years. Oh, that feels like a lifetime. Do people even live 10 years? Yeah. Well, turns out they do. You know, so you start etha saying 36,000 for 10 years? Well, you know, 72,000 for 20 years 150,000 for, you know, for 40 years. And so suddenly,

Rod Regalado 1:13:54
there's a lot of money, you're talking about real money

Scott Benner 1:13:57
could be putting away. So my point is, is that we don't think about money the right way. Because we think about it. It's like oh, it's only $300 I have to come up with this month. But it's $150,000 You have to come up with over the next 40 years. And you will be alive most likely for 40 years.

Rod Regalado 1:14:12
And then how many of your kids could you put through college without Oh, or or?

Scott Benner 1:14:17
Or any number of things? How many how many of you are walking around right now wishing you could spend five grand on refurbishing a bathroom or you need a car that you've been? You've been driving a car 10 years too long that you drive down the road? You think the wheels gonna fall off and you're going to go crashing into a tree? How many different things do you miss? I mean, I agree with you man. Insulin shouldn't be one of the things that's causing you not to have something else or have and the health side of it. Like I really feel like we didn't dig into it enough. But if people are rationing insulin even a little bit, it's such a it's just such a right you know, right

Rod Regalado 1:14:52
right. So so the physical, the physical health aspects of it are devastating. But if you're one of those One in four Americans, let's just call it let's call it 1.5 million, just 1.5 million. So 1.5 million people rationed in this country every single day, because can't afford it. Right. So that implies if they can't afford the insulin, they probably can't afford to pay some bills here or some bills there. And so now you have this effect, whereby their mental health takes a hit. Yeah, so depression rolls in. Anxiety is part of your daily life. And now you're living with depression. And now you've got all of these things, coalescing at the same time.

Scott Benner 1:15:35
And I'll finish with saying that those people are generally speaking, not the people who have time to listen to a podcast about diabetes. Yeah, right. You're listening, you're probably lucky to begin with, even if you don't know it. And so take a minute and stick up for those people who aren't even lucky enough to have a job or a life where they can put some expensive headphones in their ears and listen to me prattle on for what is now an hour and 12 minutes with Rod. Because most people's lives don't even allow for this kind of stuff. And those are the people you're sticking up for, if not for yourself, so that's how I'll leave that. Alright, Ronnie, he did a good thing here today. I hope it helps. Yeah,

Rod Regalado 1:16:16
I You did you did your wonderful. Oh,

Scott Benner 1:16:19
yeah. You're You're being too nice. We don't know if it helps or not yet. Get it out there and find out.

Rod Regalado 1:16:24
I'm an optimist. I'm an optimist. You

Scott Benner 1:16:26
certainly I got it. It'll go yeah, you wouldn't be in this fight. If you weren't optimistic. That's for sure.

Rod Regalado 1:16:31
That's true. Well, listen up. Well, Scott, and thanks again for inviting me out. I truly appreciate the chat this morning.

Scott Benner 1:16:39
My pleasure insulin dash matters.com.

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