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Podcast Episodes

The Juicebox Podcast is from the writer of the popular diabetes parenting blog Arden's Day and the award winning parenting memoir, 'Life Is Short, Laundry Is Eternal: Confessions of a Stay-At-Home Dad'. Hosted by Scott Benner, the show features intimate conversations of living and parenting with type I diabetes.

Filtering by Category: Dexcom

#675 How Affordable Insulin Happened

Scott Benner

Martin Van Trieste is the President and Chief Executive Officer, Civica Rx. Civica is making affordable insulin.

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon MusicGoogle Play/Android - iHeart Radio -  Radio PublicAmazon Alexa or wherever they get audio.

+ Click for EPISODE TRANSCRIPT


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 675 of the Juicebox Podcast.

On today's show, we're gonna have a conversation that I didn't think I'd ever have on this podcast. It's with the CEO of a pharmaceutical company whose goal is to make insulin and make it affordably. I know that's weird, right? Please remember while you're listening 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 healthcare plan. We're becoming bold with insulin. If you have type one diabetes, and are a US resident, or are the caregiver of someone with type one and a US resident, you are eligible to take this survey AT T one D exchange.org. Forward slash juice box. It's a quick survey. It's not hard. Your answers help people with type one diabetes. It also supports the podcast. It's completely HIPAA compliant. Absolutely anonymous, simple to do, you really can't go wrong. T one D exchange.org. Forward slash juicebox.

This episode of The Juicebox Podcast is sponsored by the Contour Next One blood glucose meter. Learn more about my daughter's blood glucose meter and buy it even if you want at this link. Ready, I'm going to say the link contour next one.com forward slash Juicebox. Podcast is also sponsored by us med. US med offers white glove treatment to its customers, you can get your free benefits check at us med.com forward slash juicebox. Or by calling 88087211514. Start getting your diabetes supplies from us Med and get rid of the headaches that you have now, wherever you currently get your diabetes supplies.

Martin Van Trieste 2:19
My name is Martin Van Trieste, President and CEO of civica. civica is a nonprofit Generic Pharmaceutical company whose mission is to bring quality medicines that are always available and affordable for everyone.

Scott Benner 2:33
Okay, I want to find out how you got to this. So I'm gonna go back pretty far. What did you do in college?

Martin Van Trieste 2:40
So I'm a pharmacist by training. So I got a degree in pharmacy from Temple University School of Pharmacy. And as I was graduating pharmacy school, I had a chance to do an internship at Abbott Laboratories in Chicago, and I decided to take that. And ever since then I've worked in the pharmaceutical industry.

Scott Benner 3:01
Did you go to college with the intention of dispensing pills? Or did you think you were always going to go into Pharma?

Martin Van Trieste 3:06
No, I went to college that game on Sunday with all my own little pharmacy.

Scott Benner 3:10
Really? That's great. That's really interesting. Is there something about it that moved you was just the opportunity and you enjoyed it and just kind of stuck with it?

Martin Van Trieste 3:20
Yeah, I think the first I had the opportunity to go into industry and experience what industry were like when I was an intern. I thoroughly enjoyed that. At that time, I began to become aware of the little mom and pop pharmacies were closing faster than others were opening. And I said, you know, probably don't want to work for a chain pharmacy, or hospital. And so I went into industry, I don't want to date you, but about what year was that? So I graduated pharmacy school in 1983. Okay,

Scott Benner 3:51
so yeah, it's interesting, right? You you grew up with this idea in your head, and then the landscape shifts right out from under your feet, I guess.

Martin Van Trieste 3:58
That's it within a really quick time period. So when I went into pharmacy, there was definitely an opportunity to have a viable pharmacy and when I came out that opportunity had been gone. So just five years

Scott Benner 4:10
well spent that change. It's really fantastic. How quickly could happen. Okay, so you above what did you do the for that first job? Were you in compliance where you

Martin Van Trieste 4:21
say I was in I was a research pharmacist, so I did formulation development. So I was the one who took the active ingredient and made it into something that was pharmaceutically elegant that you could actually administer to a patient. So they could consult to be effective.

Scott Benner 4:39
Yeah. Did you work on anything that you're particularly proud of?

Martin Van Trieste 4:45
Not when I was an intern.

Scott Benner 4:50
You weren't allowed back close to the I

Martin Van Trieste 4:51
guess. I guess I have to be careful about that comment. So I met my wife who was also a an intern at Abbott at that same time, so I worked on Making a family I

Scott Benner 5:01
guess. There you go. Yeah. So you're you're definitely proud of that. But I know my wife will tell me all the time. My wife's in drug safety. And very interestingly, she went to college to be a doctor. And when she got out, she had a little, a little kind of falling out with her family and she just couldn't afford to apply to med schools. So she got a Kelly Services job, they Kelly does scientific stuff, too. And she just was really good at the safety stuff and stayed with it. And she tells me all the time about her second job out of college was with a very small pharma company called forest labs. So she worked on Celexa and, and she's, she's really proud of of what she did with that when she was younger. So that's what what made me ask. Okay, so do you jump on? I mean, Pharma is one of those jump around jobs. Did you bounce around a little bit?

Martin Van Trieste 5:52
Yeah, I mean, I think you know, what I would have to say is, I worked at Abbott for 21 years. Wow. And why was it Abbott, I did numerous kinds of roles. I was a formulation pharmacist, I worked in manufacturing, and then I was in quality. And I left Abbott as the head of quality for the hospital products division. And what happened is, when I was at that point, my career, Abbott had spun off the hospital division to become Hospira. And I said, you know, what, I spent too much time building the organization that I didn't want to be part of the one that was probably going to tear it down, you know, as a standalone company. So I left there, I went to bear healthcare is their global head of quality for their biologics group, based in Berkeley, California. So from Chicago to Berkeley, and then I moved after two years at in Berkeley, I went to Amgen and 1000 Oaks, California, where I was their chief quality officer.

Scott Benner 6:56
You have a little the Chicago in your voice. I don't go Yeah. So when you were moving around inside the company like that, was it a case of you getting bored? Was it a case of you wanting to learn more, or were people poaching you because they saw your work?

Martin Van Trieste 7:14
I think it was a combination of my leadership wanted me to be a well rounded, professional. So Abbott was good at making sure people got exposure to different parts of the company. So when they became an executive, they were well rounded and understood how the company were. So it was partly that it was a little bit partly because, you know, I didn't get bored, but I always wanted to do something different.

Scott Benner 7:44
I understand at some point, you start feeling like you're doing a repetitive job. And that feels like it's time to move, right? Yeah, yeah. I when I was in eighth grade, my guidance counselor said you should be an attorney. And I said, but then I'd be an attorney every day for the rest of my life. And I just, I couldn't imagine even as a little kid, like, doing the same thing over and over again. Anyway. So what I guess the question is, is that what did you pick up along the way or see that made you want to make this leap from Amgen to what you're doing now? Well, it's

Martin Van Trieste 8:15
very interesting. So I retired from Amgen Oh, I retired from Amgen and went into retirement. And one day my phone rang. And I typically don't answer my telephone unless I know who it is. And it rang. I had no idea who it was it says a Utah area code. And for some reason, something said answer this phone call, which is like I never do that. And I answered the phone call. And it was a gentleman by the name of Dan Lilly quest. He was a chief strategy officer at Intermountain Healthcare. And he was talking to me about starting a nonprofit, pharmaceutical company, and he was telling me about his ideas. And he asked if I would come to a meeting that they were having in Utah, where he's bringing in various advisors to, you know, beat up on his idea to see how it'd be how they make it successful. And they were politicians, health system executives, pharma people, academics, so wide group of people came to this meeting in Utah. And I had known no interest in going, right. But I looked at my wife, I said, we haven't been to Utah. All right, let's go to Utah and make your day better vacation. And then one thing, you know, led to another, I kept providing advice over some time to them. And they got to the point where they're gonna announce the official name of the company and started the company. And he had called me about it and I go, Dan, do you have any employees the company yet? He goes, No, thanks. So you can announce some company, whether snow would work. So They said, Well, can you hire some people for me? So I hired the original team at the company. And then I said, Okay, Dan, what are you going to do? Now you need a CEO, someone needs to leave these people I just hired. And I gave him some names to some people. And they came back and they said, no, none of those that they want to do a bigger national search. I said, guys, you're gonna delay you know, the start of this company by a year from do a big national search. I said, You got to, you really got to look at these people are. And one thing led to another dad called me one day and says, we got the answer. I go, good, who to hire, because I got to tell the other ones why they didn't get hired. He goes, No, we want you to be the CEO. I said, you know, what, don't you understand about retirement? I'm happy. I'm retired. I'm just dabbling on the edges helping you? No, no, we want you to be the CEO. And I think I said no, on eight consecutive days, multiple times during the day, when Dan is a very persistent individual,

Scott Benner 11:06
I gather.

Martin Van Trieste 11:09
Finally, my wife tapped me on the show or said, Look, you should probably do this job. It's, you know, it's exactly what you've been preparing for your whole life. You know, your your experience in developing all the drugs that are on the list of drugs we're gonna make are on drug shortage. And I may either formulated them as a pharmacist, I manufactured Deb, where I oversaw the quality of them when I was at Abbott. So So I said, Okay, I'll do it. I told Dan, I said, I'm going to do this job, so you can find her my replacement. So I'm only giving you six months to find my replacement. Four years later, I'm still doing that.

Scott Benner 11:51
Are you Are you pleased about it?

Martin Van Trieste 11:53
Oh, yeah. No, I thoroughly, thoroughly love the work. And you know, it's more of a volunteer assignment for me, because I get no compensation from the company. Oh, no. All Pro Bono. So it's really, it's really been interesting and fun. And I have loved the team we've put together I mean, how many times in someone's career do you get the higher your entire team from scratch? Right. So it's a great team. It's been a lot of fun. And we've had great success. We've done a lot of great things. And so, so yeah, it's been it's been a real pleasure.

Scott Benner 12:29
I interviewed the gentleman that put together the production floor for Omni pod. And his story is so similar to yours. It's fascinating. He was retired from a soda company. And, you know, somebody said, Hey, come take a look at what we're doing. You have any thoughts? And then the next thing you know, he's not retired anymore. But you're not taking a salary. So you were retired and comfortable. And, and you're doing this? I mean, okay, I see why you helped in the beginning and I even see why you took the CEO position. How come you didn't bail on in six months? What kept you there?

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Martin Van Trieste 17:09
Oh, why imbalance expense? Because there was always another challenge? You know, we did we achieved our first big objective, right? And then what's the next object? Right? So there's always a big challenge ahead of us. And at some point, you know, you got to look at it and say, though, always will be a challenge. If you do your job correctly, if you're trying to change the industry and transform and disrupt the way things have been done, but front of you, there's always going to be challenges ahead to keep it interesting.

Scott Benner 17:38
Excellent. So what did you I mean, what were your first steps? Obviously, you set up the company had needed employees. But you're I mean, can you talk a little bit about the difficulties and some of the things that came up in that room when people were trying to shoot holes in this idea of like, what what are the I guess my question is, what are the big obstacles into getting into such a? I mean, into a space that makes a lot of money for the companies that are in there. When you're saying we don't? That's not our goal? How do you get into that? How do you not end up in an alley beat up by?

Martin Van Trieste 18:14
A lot of people ask, Are you afraid that someone's going to kill you? I said, you know, the pharmaceutical industry is so used to competition, right? And for people to try to do things differently, that it doesn't pose a big threat to them, right? Because they know there's always going to be someone doing that and they prepare for it. And they have something new that they're introducing in the marketplace. The other thing is remember we're working on old generic, very old generic drugs that are on shortage. And by just that definition that they're on shortages. People don't want to make them anymore. Okay. Right. So there's, there's limited competition, the drugs are on shortage. So So that's part of it. The other part is, you know, people took us for granted, they didn't think we could do it. I remember one quote from the CEO of a very large generic company, who said to one of our members, the CEO of a large health system, go you know, you guys don't know how to make drugs, you're not going to be successful. You don't bother me. And I think that was a prevailing thought process. When we introduced the company that they thought, you know, a bunch of hospital executives aren't gonna know how to make drugs. They didn't realize that the hospital executives are really smart and they hired a pharmaceutical executive. Pharmaceutical team knew how to do

Scott Benner 19:42
that. Did you go look at his back catalogue of drugs and decide which ones you could make? Just to show him

Martin Van Trieste 19:50
actually, how we select our drugs is really, really interesting. So civica is a member driven organization, right? So large health says firms are members of the company. And they decide what drugs we should make. So they look at their portfolio of where they're having trouble finding a drug. And then they look at what is the patient impact for not having that drug, okay. And they prioritize it together to say, here's what we want you to make. Now, it's a great idea on paper. But when we went to execute it, I thought this was going to be total chaos. Right? We had 60 people in a room, hospital pharmacists supply chain professionals, nursing nurses, in a room to say, we can only do 10 drugs to start in the first year, what 10 Do you want us to make, and her over two, at that time, there were like 280 drugs on the FDA drug shortage list. And over half of them were sterile injectable products were, which is what our focus was on. And I thought this was going to be total chaos. Right? It was a four hour meeting. And after the first hour, we had consensus on the first 25 drugs that we should work on. And they actually prioritize them one through 25. So I was pretty impressed, because that really showed what was important for the patient was into getting a bunch of people in a room who could agree on something that quickly says they're really focused on what that patient needs. Yeah.

Scott Benner 21:28
And it means they all they're all seeing the same thing over all right, yeah, was insulin on that initial list of 25.

Martin Van Trieste 21:35
Insulin was not on that list of 25. But it was something that people were asking us about, because insulin is not was not on shortage, it was high price. But it wasn't on shortage, right. So we want to focus on the drugs that were on shortage. And I was in I was, I really did believe that the marketplace would fix the insulin problem. As generic insulin would come to the market, the marketplace would correct itself. And we watch that market very carefully, hoping that the marketplace would correct itself, and it hasn't. And so we had a bunch of philanthropic individuals come to us and said, Can you make insulin. And we said, we can that we did look at it, we know how much it costs to bring it to the market. And they said Walmart will raise the money to make it happen. So Dan, Lilly quest led that initiative for us. And we set a goal of $125 million in capital to be raised to bring the three different insolence to the market. And those three insolence would be the generics of Lantis, human live, and overlock, which is about 80% of the insulin used in the United States. And that's why we picked those three, and they were off patent, which is important. And we're on well on the way we've raised over two thirds of that 120 $5 million to bring those three molecules to the market. And I'm pretty sure by the end of the summer, we'll have all of that money.

Scott Benner 23:09
Wow. up when you said you thought that the market would correct on insulin, it never did. Do you have an idea about why or a guess? Yeah, I'm

Martin Van Trieste 23:19
pretty confident. I know why. And it's these perverse incentives that creeped into the market. So the higher the someone raises the price on insulin, and gives giant rebates to a pharmacy benefit managers, these are middlemen between the pharmaceutical company and the patient. And they're negotiating contracts for insurance companies in large employers, and they develop these formularies. So if you go into the pharmacy, there's a formulary. And depending on who the insurance company is, that drug that's higher on the formulary has a higher probability of being dispensed. So you have three insulins out there, they're very similar in the way they work. And so the what they want to do is to be very high on that formulary, they want to be the first choice. So what they do as they raise their price, and provide big rebates, the Pharmacy Benefits managers, who then put them higher in the formulary than anybody else. Now you have three players in the marketplace that are competing by seeing who can give the biggest rebate. And so it's estimated that probably 80% of the list price of insulin is a rebate is rebated to the PBM. So if you look at that means $100. If the if Lilly raises they've crossed $100 For VIOME Lilly insulin, that means $80 has been given to pharmacy benefit

Scott Benner 24:50
managers so they put you higher on the list. So that

Martin Van Trieste 24:53
puts you higher on the list. Now what happens is for those who have no insurance Right, they pay that list price. And insurance company negotiated a lower price through that pharmacy benefit manager. So an insurance company's paying the $20 per $100 spent, right? So the person with no insurance, or have big deductibles in their insurance plan, pay that list price until they can get something, you know, till they meet their deductible or they pay it the entire year. Okay, so what that says is, the sickest people in society pay the highest price for their medications. And that seems the that's the perverse way what insurance is supposed to do, right? Insurance is supposed to say, the healthy of us take care of the sickness. Right. But because these perverse incentives have creeped into the system is broken the insulin market and it's an it's not going to get fixed easily.

Scott Benner 25:58
How did if you know how to pharmacy benefits managers wiggle their way into this system? Was it through large employers?

Martin Van Trieste 26:06
I honestly don't know the history of how that all started. Okay.

Scott Benner 26:11
Yeah. So this, it's kind of crazy, because it's almost like it's a little like three card monte when you're talking about it. So. So the insurance company is are they paying more like who's paying for this? Because if the people who were insured, I mean, there, I pay, I don't know what I pay it, to be honest with you. 20 $40, when my daughter gets insulin, I don't think it's much I think my health care probably cost. I hate to think about it, but I have recently, I've a family of four, we might be around eight $9,000 a year, like when you know, what comes out of the check what's out of pocket, etcetera, etcetera. But I mean, after that, who's, who's paying for this.

Martin Van Trieste 26:57
So, the way the system is set up, the benefit never reaches the patient, right? So you would assume that if there's rebates being paid the pharmacy benefit managers that some of that rebate makes its way to the patient, and that doesn't happen. So pharmacy benefit managers are providing money to the insurance companies to large employers. And it's being dispersed through the system. But the vast majority of that of that rebate stays with the pharmacy benefit manager.

Scott Benner 27:29
So these people are just passing money around to each other. That's right. Okay. What percentage of patients do you think aren't covered by insurance? So who is really being hit by this numbers wise?

Martin Van Trieste 27:44
Yeah, that's a good question. It's and there's not a good statistic on that, that I've been able to find. But I hear enough horror stories about people and the cost of their insulin that says that we'll be able to have a pretty significant market impact. Great. And remember, it's not just those without insurance. It's also those who have those high deductible plans. Yeah, no, sure. Right, that unique need to meet your deductible. And we're and at the end of the day, if we can transform and disrupt this system, really helpfully premiums can be lowered for people who have insurance.

Scott Benner 28:21
Why? Why are they not fighting more about this? Where are they are they just see you described earlier, a scenario that made me think the the way the NFL works, which is offense is developed something then defensives figured out how to get through it, and then the offense changes? Are they just changing their offense right now? Are they letting you do this?

Martin Van Trieste 28:42
Yeah. So I think they're, they're not taking us for granted because we have a proven track record that we can disrupt and transform. But it's part of our society is what have you done for me this quarter? Right, I have to meet my quarterly objectives to my shareholders are rewarded. So they're not focused on something that's coming out in 2024. They're focused on what's coming out in May, August, right. So it's that short term view of the world that I think, but I do see, as we get closer to the launch of civic insulin, we will see a bunch of gnashing of teeth of those pharmacy benefit managers. But they also will shift the rebate game away from insolence some other product.

Scott Benner 29:31
Okay. Just some other vectors gonna get hit by this.

Martin Van Trieste 29:35
That's right. Yeah. So if you think about it, the first big rebate drug that comes off patent will be humera in 2023, used for arthritis and psoriasis, and so forth. That's the first big drug that pays a lot of rebates. It's going to come and get generic competition. And we'll watch what happens in 2023? Will the generic companies play the rebate game to try to get better preference on the list? Or will the generic company one generic company say I'm going to try to break the system? So we're going to watch that closely. Okay, I the actress or Milan slash NaVi actress Aviatrix, now they have generic insulin called sem sembly. Right. And when they introduced it, they tried to break the marketplace with a low price. But they then had two versions of the same product, one that played the rebate game, and one that just has a low price. Okay, we're trying to serve two different marketplaces with that,

Scott Benner 30:43
well, that work because that's always what I've wondered, I've always wondered why the big companies don't just, I mean, from my, I have a bit of a hippie attitude, you know, and I always just thought, like, well make the money the way you're making the money off the insured people and everybody else just give it to them. Like, who cares? Right? Is that not viable?

Martin Van Trieste 31:02
Well, they're not doing it. Yeah, no.

Scott Benner 31:06
Well, why don't have the viable and palatable are the same thing. But you know, I was, you don't mean, like, at some point, do you just? Well,

Martin Van Trieste 31:15
they're all these companies have patient assistant programs. Right? The really, really poor people have access to the medicine. But it's more affecting your the middle class, I would say, Okay, who don't have the insurance or in between jobs, you know, things of that nature?

Scott Benner 31:35
Yeah, yeah. How are you? So in this idea, where you just kind of keep paying attention to drugs? Like how many drugs do you manufacturing right now.

Martin Van Trieste 31:43
So we offer 60 products to our members. We don't manufacture anything right now. We acquire them through other suppliers. So remember what I was saying drugs around shortage, that means people used to have a license to make something and they stop, or they're having difficulty making it. So we try to find alternate suppliers, bringing them back into the marketplace, by providing them a better economic model than what's currently in the system?

Scott Benner 32:14
And are you able to accomplish that because of the collection of hospitals that you're feeding, so you have enough need for them to go back into manufacturing?

Martin Van Trieste 32:22
Right, so we guarantee them a certain market size, and a certain market price for a five year period. Okay, so they we've taken uncertainty out of the system for them, right, know how much you're gonna charge how much they need to make over a five year period. And the other thing we do that's different than the current system, is we go to them and we say, You know what, we want to buy this product from you. And we'll pay you the day you deliver the batch to us. Current system doesn't do that current system, you take it and put it into the wholesale network. And the whole seller pays you after they sell it. Yeah. So it could take you six 810 months a year to be paid for a batch when we pay you instantly. So we're changing the model. And we also then tell the supplier, you don't need to keep inventory, we keep all the inventory, and we'll keep six months of the inventory. So there's always resiliency in our supply chain, so we won't have a shortage. When I

Scott Benner 33:27
was growing up, my buddy worked in a bookstore is a long time ago now. Over 1300, Geez, how old am I it's over 30 years ago. And you know, paperbacks would come out. And they sell as many as they could. And when they were done and the interest was gone. If they had 10 books left, they'd return eight of them. But the way they got returned was they rip the covers off of them sent the covers back to prove that they hadn't sold them. And then the books were just destroyed. And I don't know what about what you just said made me think about that. But I think that most people who don't understand how this stuff works, would be shocked to know that you don't I mean that that, um, so that you're paying up front? Is that got to be a huge comfort to them. And are you actually using the drugs? You're not? Are you? Are you getting stuck with stuff that you are doing books with covers ripped off from laying around?

Martin Van Trieste 34:17
No, no, we've not had any product. We have 60 products we offer our members. Remember, we have guaranteed business from our hospital systems. Right? We can forecast off of that. So we don't have product that expires because we know what the health systems needs are, what their buying patterns are. And so we build our inventories to support that

Scott Benner 34:39
it's amazing. It really is.

Martin Van Trieste 34:42
Now insulin is going to be different, right? Insulin is not going to be just given to our members. Insulin is going to be provided to anybody and everybody.

Scott Benner 34:50
Mark You're good at this. Hold on. Let me just scratch off my next question from my little tip sheet in front of you that I was writing. My next question was how do you get it out? side of the system to the people go ahead, how are we doing that?

Martin Van Trieste 35:03
So, so we're gonna give it to anybody and everybody. And of course, we're gonna have the help of diabetes advocates. So you know, JD Rh, right? Beyond type one. So these organizations that have raised money to support us to bring insulin to the market, are going to be advocates for us and let their pay their membership, know where our insulin is available, how much it's going to cost, etc, etc. So they'll be advocates for us, we will provide that insulin to anybody who agrees to our pricing policy, right. And so our pricing policy is for a vial of insulin, it will not be more than $30. And we're going to communicate that through those advocacy organizations, we're actually have a little QR code on our product labeling, so that you can read that QR code, you get the package insert, but more importantly, you know, there'll be a note that says you shouldn't pay more than $30 for this. So we're trying to give that information to the people with diabetes or their families. Let them know that if you pay more than that, you know, find another pharmacy. Somebody

Scott Benner 36:17
is up charging you. Hey, just for clarity you misspoke a second ago, you meant JDRF?

Martin Van Trieste 36:24
JDRF. Yeah.

Scott Benner 36:25
You said, Ah, that was oh, I'm sorry. No, don't be sorry. I just I was like this. There's someone I don't know about. I wanted to double check to see, okay, this has to go to pharmacies, then. I mean, there's no other way to distribute it right?

Martin Van Trieste 36:39
Well, it's what your call your definition of a pharmacy, right? So clearly has to be dispensed by our pharmacy. But a pharmacy can be at Walmart, or Costco, or Amazon, or a bunch of these new pharmacies that are being developed called Digital pharmacies. Okay? Right. So has to be dispensed by a pharmacy, but there are different kinds of pharmacies today than the brick and mortar ones on the corner.

Scott Benner 37:06
So this can be on this may be online as well, then. That's right, it could be online. And so you're, you're gonna direct ship from your, from your stock.

Martin Van Trieste 37:16
We it depends on how we're doing and who we're working with. But we could direct ship from our stock, I don't think we'll be using wholesalers.

Scott Benner 37:24
Okay, this was I sat in a room once, I don't want to say with what company and I kept saying, Can't you guys just ship it directly? Like, why don't you get out of this model. And it seemed like something no one was interested in at the time. But it made sense to me in the moment, like listening to the wash of what they thought their problems were and their things to overcome. I was like, just sell directly to people like start your own. Like, I remember saying in that room, like start your own. Just do it. I was like you could pay yourself I was I was kind of genius, Nolan. Everybody's like. So is the real thing here is that the way this is getting accomplished is through desire. And that and that somebody had to step outside of the system and and want to do this because inside the game, no one person could make this change, right? Like you couldn't, if you would have stood up and had this idea at a big pharma company, everyone would have just turned their back on you and walked out of the room because like, I need this job. I don't want to talk about this. Like, that is the thing, right? It had to start over.

Martin Van Trieste 38:26
Ya know, clearly, it needed a disruptive, transformative and innovative approach to be successful. And, and, you know, it takes startup companies to do that. You know, Big Pharma is traditionally very conservative. And conservative organizations try not to be disruptive.

Scott Benner 38:53
Okay. Yeah, yeah, that's what I see, too. I just, I mean, there was, because people are always saying, like, why don't you just why don't you just and I think to myself, like, if you were there, you'd know, that's not possible. Like it's theoretically possible. But once you get into the system, you're not breaking free of that idea. I mean, you know, you know, in your regular job, good luck getting rid of the birthday cake they bring out on Friday for people like you couldn't, you couldn't get consensus on stopping that, you know, so how are you going to get involved in this? Well, this is really kind of amazing. How, how long ago? Was that meeting in Utah? Tell me again.

Martin Van Trieste 39:32
So that meeting was, I want to say January 2017.

Scott Benner 39:39
Wow. So over five years ago, yeah, yeah. And just for people to understand, like the length of time that things like this take to happen. And because that person you've met with he had that idea prior to that even so you're you're over five years of just thinking Planning and trying. And then the next step is I'm trying to imagine how you get startup money from people when you're not trying to profit. That seems like that might have been a daunting task as well or no.

Martin Van Trieste 40:14
So it wasn't that hard. Okay, but it was, but it wasn't easy. Don't get me wrong, it wasn't easy. But it wasn't that hard. There was a there, there was a giant problem impacting patients lives in hospitals. But also, it was driving any efficiencies and higher costs in hospitals. So traditionally, what most hospitals have a drug shortage team consisting of pharmacists, supply chain, nurses, and even physicians, and they meet on a regular basis. And sometimes they move even daily, to say, what can we get today to treat the patients? And how are we going to have to do something different a different procedure, or buy a different drug. So now you have these people meeting every day, they're coming up with alternative ways of treating a patient, which means you got to train people in the hospital. And then you maybe have to buy more expensive drugs than the ones that were on shortage. It is estimated by like, you know, the Government Accounting Office vizient, which is a large group purchasing organization, that that's somewhere between 600 million and a billion dollars annually, that's added costs in the health system. So you have that pain and suffering that's going through the health system, patient care, and financially. And you want to solve this problem. So you have a big problem that wants to be solved. And we asked you for some startup capital to go do it. And it's not a hard sell. Okay? Right. So we very quickly brought in about 1/3 of the hospitals in the country into our membership group. Now, when we just go and talk about insulin, that's another type of different kinds of thing. The pain and suffering that diabetics deal with every day, with die price insulin and rationing their insulin, not taking their insulin right leading time really bad consequences for them for doing that. Over the long term. There are a lot of people who are wealthy, that want to change that that paradigm, and they gave us money. You talked about the length of time. You know, we're building our own manufacturing plant in Virginia. And that plant was originally designed to make these drugs that are on drug shortage, that that process from the time you say, let's go and do it to the time you're completed is about five years. Yeah. Right.

Scott Benner 43:07
It's a it's a long haul. It really is. Do you think other? Well, I have a question before that question. When you're talking about the flange, the flange? Where did that word just come out of people who want to help you? I'm not gonna sit here and try to say, say that word that won't come out of my mouth for some reason that I clearly know. When you when you're trying to get money from those people. And it's coming in? Do you think it does it need to keep coming or once you're up and running, you'll be okay.

Martin Van Trieste 43:38
So our entire business model, both on the drug shortage side, and on the incident side, is once we're up and running with any particular product, that product has to be self sustaining. Okay, so we have to charge enough for an individual product, that it's self sustaining. So we operate on a cost plus basis, what does it cost us to make a particular product? Let's add a little bit of margin to that. So the product is self sustaining.

Scott Benner 44:10
Okay, that's amazing. So the end, these donors are not expecting any return on their money at all, or they are. They're not. Okay. Wow, I didn't know if that was part of your business model where eventually the money comes even just their initial money comes back to them or not. Do you think? Do you think that this is something that you can scale to keep impacting things? Or do you imagine other companies might start up like you and do similar things in other spaces?

Martin Van Trieste 44:38
So clearly, there's there's enough things that need to be corrected in the in the marketplace that there's room for lots of competition? Yeah. And we don't view it as competition. Right, because our whole goal is not how much market share we get. That's not our goal. It's how much market impact we make. Right? We fix To America, but there are other nonprofits starting up that are trying to do similar things and other pieces of the of the area. You have other organizations that are for profit that want to break the system and do things differently, all those digital pharmacies, they're trying to break the system. You have Amazon, they're trying to break the system. Right? So you have lots of lots of people trying to do things different in this marketplace to try to change it.

Scott Benner 45:26
Do you think if the system was successfully broken down, would that drive the major players out of the insulin game or other drug companies from making drugs?

Martin Van Trieste 45:36
I don't think people would leave the market. Especially the insulin market, you know, Lilly and Nova and Sanofi right are heavily invested in insulin. And they're always working on how to make improvements. So I just read yesterday that one of Lily's drugs, that lowers blood sugar causes weight loss, and just like novice drug does, and so they're looking at taking that a product that lowers your sugar levels to drive weight loss, right? So they're always working on something in the space are always figuring out how to make improvements. And like I say they're used to generic competition. They've right since 1984, the hatch Waxman Act has encouraged generic competition. And so they're used to it and they're always trying to innovate. So if their product goes off patent have something to replace it.

Scott Benner 46:29
You didn't get any pushback politically for this.

Martin Van Trieste 46:32
Oh, no, everybody, the entire political spectrum, basically loves us. Okay. It's a bipartisan issue. Right? Patients are Republicans, Independents, and Democrats, they all hear the pain that patients have gone through. Every time I go to Washington, it's amazing. Every time I sit with a congressman or a senator or their staffers, how positive they are about us, they're encouraging us to be successful. And so no, it's it's very positive from Washington. Now, I know others are lobbying against us Sure. Every, every time I go sit with the senator or congressman, they, they basically say, when you're going to do insulin, when you're going to do insulin, that was from day one, when you're going to do insulin,

Scott Benner 47:23
do you find that what they're saying in the room is reflected in their actions in public?

Martin Van Trieste 47:29
You know, in public, they can't agree on anything. Right? Right. I mean, they wouldn't even be able to agree that Washington's Birthday should remain a holiday. Right? So to me, you know, what they do publicly is, you know, is is very, is very partisan. And this this issue, you know, at least insulin, they're talking about a $35 cap on insulin. And that actually is very complementary to what we're doing, okay? Because if you do a $35 cap, the pharma companies are still going to charge the price they charge, you're still gonna give rebates to pharmacy benefits managers, so someone has to backstop what the current price is to the $35 cap. Yeah, right. So whoever is paying that backstop, if it's the government, and we're charging $30, they benefit from what we're doing. Right? If it's an insurance company, they're benefiting from that backstop. And by the way that that $35 cap only affects someone's copay. Okay. All right. So if you're uninsured, that doesn't help you that $35 backstop.

Scott Benner 48:44
Right. Well, you know, it's it's just it's almost, it's angering it is for me, it's angering to think that this entire problem is built off of people just like basically lining pockets to stay higher on a list so they can sell their thing. And at the same time, I actually understand how they fell into it. Like once it was there, I understand why they played the game, you know, where they wouldn't be selling.

Martin Van Trieste 49:08
And I think the game started with EPI pens. Really. That's where someone was smart enough to figure out. Okay, generic competitions coming from my epi pen. I charge right now $300 For two epi pens. What I'm going to do is I'm going to and when I was charging $300 for two epi pens, I was keeping $260 and the pharmacy benefit manager was getting 40 Okay, I'm gonna raise my price, I'm gonna double my price. I'm going to double it to $600 and I'm going to give $300 to the pharmacy benefit manager to keep me at the top of the list and not put the generic guys anywhere on the list at all. And I now know I don't keep to under $60 I keep $300. And the pharmacy benefit managers, they don't get $40 they get 300. So now I want to bring a low cost epi pen to the market, I have to go to those pharmacy benefit managers. Right, I have to go through them for the get the insurance companies to pay for me. And I got generic epi pen I want to bring to epi pens for $50 to the market. And they go, but you gotta give me 300 to get on the list. Why can't give me 300 I'm only charging 50. It's

Scott Benner 50:36
like trying to get into a club in the 80s. Right, you just you grease some palms at the door to get in. I have two questions here. So my first one is, and I just want to kind of come from this from the other angle for a second. Is there how to I mean, this making a drug is not easy. You're obviously a bright person. Right? And and you have a lifetime worth of experience. And I think that as a as a layperson, I want bright people with lifetime's worth of experiences making drugs. Is there. Is there a world where you break the system so much that a kid coming out of college won't choose Pharma? And do we weaken the system that way? I know that's a real big picture idea. But I was wondering if you ever thought about

Martin Van Trieste 51:24
it? I mean, well, we think about it from a different perspective. Okay. So we say we do not want 100% of the volume for any drug. Because if we do that, eventually will become the problem that we're trying to solve. Right? Right, if we provide one or percent of any drug, and if something goes wrong in our supply chain, will no longer be able to provide that drug. And that's not good. So we try to limit the amount of a drug that we produce to no more than 50% of the market. And we work with our members to kind of worked through that those calculations and those forecasts and those commitments we talked about. So we're trying not to do that, from that perspective. Could we break the market in such a way that no one would want to go into the, into the pharmaceutical industry in the future? I think that's hard to do. I mean, one company can could hurt another company, right? I could take all the sales of insulin, for example. And, and Sanofi and Lilly and Nova would be really financially hurt by that. But that's just three companies in an industry that has 1000s of companies making pharmaceuticals. So I think it's hard for us to do to break the model so bad that people won't want to go into pharmacy

Scott Benner 52:57
and civic as an example. Are you compensating employees similarly to how they're they be compensated in a foreign?

Martin Van Trieste 53:05
Absolutely, I'm the only one that makes nothing.

Scott Benner 53:10
somebody's walking,

Martin Van Trieste 53:12
otherwise, we pay very competitive salaries, or I would not have been able to hire the team of people that I have. Yeah,

Scott Benner 53:19
I get that. It's just It's, uh, you know, in my mind, those people, they go to Expensive Colleges, and they come out and they have, you don't I mean, there's still people and they still have dreams, and they want to put kids through college, etc. But I think what we're really hearing is that some people civic are walking around with Martin's money in their pockets. It's a really, it's a really kind thing you're doing, I have a couple more questions, I'm gonna let you go. Have you ever considered open sourcing what you're doing going to other companies and sharing what's working and what's not working so it can grow?

Martin Van Trieste 53:52
We were very transparent organization, and we actively teach our model to anybody who wants to learn it. And so not only companies, but I've had foreign governments call me and say, How did you do this? What are you doing? What can we learn from it? So we're very transparent, and we do teach the model to people.

Scott Benner 54:14
It's wonderful. It really is. Okay, well, we have painted a really rosy picture of of insulin pricing in the future for people who I mean, you imagine mostly this is going to be people who don't have insurance, right? This is going to help?

Martin Van Trieste 54:28
Well, so it'll definitely help those people people with high deductibles. Right. But also, right. It'll help insurance companies, right, because insurance companies are paying a higher price and then we'll be selling it for so to help insurance companies and hopefully the insurance companies then lower their premiums based on those savings.

Scott Benner 54:53
I guess if I just want to stick it to the man I could buy your insulin if I wanted to. Right. But

Martin Van Trieste 54:57
clearly, I mean think about it, right? I go to buy some generic drugs for myself, right? I, I'm an old white guy, I have hypertension and high cholesterol and things, bad knees. And so you take take all your medicine. And so I know the cost of generic drugs and what it is, and I'll go to a pharmacy, and my insurance deductible might be $10 $15, right. And I go and pay cash and I pay $7. Or sometimes some of the generic drugs that I had take, there was one example, where I went to the pharmacy, and they wanted to charge $250 for the drugs, right, and my insurance company, that was my deductible with the insurance company to their $50. And I went on good RX. And I found out if I go next door to the pharmacy next door, it'd be $25. Right. So clearly, there's games going on, in, in the insurance space, too, that people should be aware of tools like good RX, and things like that, to get that information to have the power.

Scott Benner 56:08
So you might not I don't know if you'll be comfortable commenting on this. But I'm just asked me a question. So there are for profit, people who are still delivering drugs at more affordable and really affordable prices, their people are still being well compensated. We're talking about like obscene wealth at the top of organizations, right? Like, I don't have a Maserati, I have seven miles or Audis. And so does my wife and my girlfriend like that kind of thing. But right, it's just, it's a piling of money at some point. Am I right about that?

Martin Van Trieste 56:38
Well, CEOs in all industries are highly compensated. Yeah. But that doesn't, that has very little to do with the price. Right? Because you can deduct, you can say that person gets no money, it's not going to significantly lower the price of any of the medications, right? Because one, people are trying to maximize the, for a for profit company is designed to create shareholder value. Yeah. Right. So the way you create shareholder value is either you increase your sales, increase your price, or cut your cost, right, there's no other way to create that shareholder value. And that's, that's what people are supposed to do in a for profit space, right?

Scott Benner 57:20
I had a person come to me once and with this idea, and they said, Well, why don't they just stop marketing, if they put so much money into marketing, and I said, you're gonna fire the marketing guy, I was like, He's 50. He's got two kids, one of them just went off to school, he's got diabetes, now he can't afford his insurance like, and by the way, when they fire him, they're not going to take his $100,000 Or two, whatever the hell he makes a year and split up between all of us. And even if he did, the, you need a quarter of a penny that badly, you know, like, it's, it's a big, you really have to understand the space to impact it's so great that you were able to pull that group of people together, or those other people as invested in like, a civic, I guess, is the feeling I get from you. Is it pervasive? Or you don't I mean, like, sometimes people are just selling widgets, you know what I mean?

Martin Van Trieste 58:09
So I would say clearly, the clearly the leadership team is, is looking fast, right? I mean, it's hard to get people to change jobs, right, who are highly successful in their industry? Sure. And they change jobs, because they believed in the mission and what we were doing. And it's interesting that the rest of the organization, the number of people who come to us, say, I want to work for you, I want to make that difference. Yeah. Right. And I can't make that difference where I'm working today. I'm like the cog in the gears, right?

Scott Benner 58:49
That's very interesting. My wife talks about that all the time that she, she felt she felt more fulfilled as a as the parent of somebody with diabetes when she worked at a company who just made diabetes stuff, you know, and not that she doesn't enjoy her job now, but that she there was extra for. It's amazing.

Martin Van Trieste 59:09
And it is true, we found out after we made the announcement that we were going to do insulin, the number of people who want to come to work for us that had that diabetes connection, like you said with your wife was was overwhelming and not just coming to work for us. A bunch of people who are at the end of their careers said I'm going to retire I've come to work for you for free. Wow. Do what I did. Right? Because of that diabetes connection.

Scott Benner 59:38
That's terrific. All right. Well, all right. I'm sold Martin. When When does this happen?

Martin Van Trieste 59:43
So we'll deliver our first insulin and we'll be the biosimilar of Lantus Claridge clergy in early 24.

Scott Benner 59:52
No kidding. You think first quarter or do you not say out loud but you think I always say out loud Guess you're not publicly held, you can say whatever the heck you want. But

Martin Van Trieste 1:00:04
we're really pushing for the first quarter of 24. Okay? It's got to be a tight schedule and a green light schedule to get there. But it will happen in 2024

Scott Benner 1:00:15
is the similar human lager Novolog. Next,

Martin Van Trieste 1:00:19
so everyone will have a little bit of a lag behind it. So right, we've developed the first insulin, the our partner who's making the active ingredient does, he then makes the first one that has a turnover and makes the second one a turnover and makes the third and repeats the process. So Glargine will be first. And then the other two will follow

Scott Benner 1:00:42
shortly thereafter, in sequence, give a timeline for those are the All of those will

Martin Van Trieste 1:00:47
be in 24. It's about a quarter between each one to get the first ones to the market.

Scott Benner 1:00:53
Do you have to do you have a an amount of time you'll need to ramp and scale? Or will it happen pretty immediately?

Martin Van Trieste 1:01:01
Well, when I say we're coming out in 24, we've built that ramp and scale into Oh, that's beautiful. Now we anticipate that in our fourth year of operation, we'll have about 1/3 of the market for those products. That's based on a forecast. Yeah, you know, forecast are wildly incorrect, right? They're not they're not an accurate thing. So. So we'll say that it will all depend on how the Marketplace responds, right?

Scott Benner 1:01:31
Well, if you ever want to come back on here and let people know about it, I'd be thrilled to talk to you more. I think it's a really wonderful thing that you guys are doing. Am I not asking you anything that I should be?

Martin Van Trieste 1:01:44
No, you asked all the right questions, did I because I'm

Scott Benner 1:01:47
surprised by that. Martin, when we sat down what I knew was your name was Martin. So I just went with the conversation. Good, good.

Martin Van Trieste 1:01:56
I mean, you go through this, you, you you have association with diabetes, you know, what it's like, I have a question for you. Okay. So we hear from diabetics, that they keep large quantities of insulin, stored in the refrigerator for fear that there's going to be a shortage of insulin, or they can't afford to pay for it, change companies, whatever it is. I find that amazing that people feel the need to do that, in our very, you know, well to do society, right. Do you, does your family do that? Do you keep large stocks of insulin?

Scott Benner 1:02:41
So I have, I think because I'm gonna have to, I think because of a job change that my wife experienced, at some point, we got into a position where we had to send scripts to a new insurance through a new insurance company, and we got insulin that we kind of didn't need. And so we had some left, and then more came in. And then since then, I've been able to maintain that backlog, I guess, as a lack of a better way to put it. Prior to that, I would have felt uncomfortable. It's funny, I would have felt uncomfortable under four vials. And my daughter probably uses what she uses 200 units every three days. So it's not a I don't have that fear that you're talking about. But I have spoken to many, many people who have it. And I do generally subscribe to what you said there are literally four pharmacies within a mile of my house and I have insurance and if I needed insulin, I could go get it. I'm not pressured by it, but I understand when people are you know, I guess that's my answer.

Martin Van Trieste 1:03:51
Oh, good. It's really nice to meet you, Scott.

Scott Benner 1:03:53
You as well, Martin, this was this was absolutely terrific. Thank you, I wish you all the best with this thank you again for what you're doing. Right? You want to take a printer out of that place or a pack of paper or something you know what I mean? One time just be like this is Martin's and just leave with it. I like to see you compensated

Martin Van Trieste 1:04:15
I've been very fortunate in my life. We you know from a family we're having a great family and three great kids and you know working in great companies and you know I'm well to do and you know, this didn't it just didn't seem nice start take

Scott Benner 1:04:28
us out really lovely. And there's no diabetes in your family. Is that

Martin Van Trieste 1:04:31
right? No diabetes in my family. Okay, well, from all of us.

Scott Benner 1:04:35
Thank you very much. I really appreciate it. All right. Yep. Take care you too.

Well, let me start off by thanking Martin for coming on the program. This was an excellent conversation. I'd also like to thank the Contour Next One blood glucose meter and remind you to go to come contour next one.com forward slash fuse box to get started today. And let's not forget us med I wasn't going to forget them. I just you know, it's a way to start talking and let's not forget us med white glove service, always 90 days worth of supplies and fast free shipping. Get your free benefits check at us med.com forward slash juice box or by calling 888-721-1514

I have to go get knee surgery tomorrow. So I'm going to keep this brief. If you're enjoying the podcast, please tell a friend subscribe in a podcast app. That's pretty much it. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. It's a simple knee surgery please don't worry about me. I'll be fine.


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#674 Autoimmune Hepatitis and Type 1

Scott Benner

Emilio has autoimmune hepatitis and type 1 diabetes.

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon MusicGoogle Play/Android - iHeart Radio -  Radio PublicAmazon Alexa or wherever they get audio.

+ Click for EPISODE TRANSCRIPT


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 674 of the Juicebox Podcast.

On today's show I'll be speaking with Emilio. He is 18 years old at the time of this recording, has autoimmune hepatitis, type one diabetes, and has been through COVID. He is a remarkable young man, and you do not want to miss this conversation. Emilio, if you're listening, your file got kind of lost on my computer for a little while. I'm sorry this took so long to put out it was not on purpose. While you're listening today, 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. If you're a US resident who has type one diabetes, or is the caregiver of someone with type one, in fewer than 10 minutes, you can help go to T one D exchange.org. Forward slash juicebox. Join the registry take this survey helped people living with type one diabetes, T one D exchange.org. Forward slash juicebox. There's like a tiny bit of space left here. I don't know what to do with it. Oh, well, it's gone.

This episode of The Juicebox Podcast is sponsored by Dexcom, makers of the Dexcom G six continuous glucose monitor, get started today@dexcom.com forward slash juice box at that link. You can also find out more and see if you're eligible for a free 10 day trial. Speaking of free trials and the possibility that you'll be eligible for them, you may be eligible for a free 30 day trial of the Omni pod dash on the pod.com forward slash juice box. More details later on in the ads.

Emilio 2:08
I am from a little country in South America cold weather. I was diagnosed with type one diabetes on July 2016. But I'll go but it all goes back to when I was three years old. At that age, I was diagnosed with how autoimmune hepatitis my life was based on living in one hospital on to next one. And going back and forth in Ecuador and Argentina because at the time, getting good treatment for autoimmune hepatitis in Ecuador was very difficult. And the doctors in the country told my family that I will not leave for long here. So my penetrations recommended to seek treatment in Argentina, even that they were better equipped. So my life went through that until I was 13. And then I started to forget, I have headaches started to be allowed to drink a lot of water. Until one day I just finished school and then my family and doctors started to figure out what's wrong with me. And they really thought the problem was my co better because I had mural stones and the stones, the doctors finally remove it from when they did their blood work. They never tested for glucose. Okay, so I went through surgery and everything went well until I woke up in the recovery room, and then fainted again. They told me I started really heavily and I had a sort of compulsion. Then the nurses entered the room and they checked my glucose. My dad has a number on his head, he always told me it was 523. After that happened, they moved me into the intensive care unit when I woke up. And I remember I was surrounded by those doctors and how to sort of cables and tubes connected me to machines from that. From there. From that moment, things were not so bad. I started to recover. But I couldn't feel my rent like completely. Then the days passed. And I started to rain sensitivity in the upper part of my leg. But the other part was not working. So I had to use crutches to move on my own.

Scott Benner 4:22
So hold on one sec. I'm gonna slow you down. Yeah, I want to make sure I'm understanding. So also you did a great job of telling me about yourself. You never said your name. Do you want to tell people where do you want me? Oh, yeah.

Emilio 4:31
My name is Emilio. Sure.

Scott Benner 4:36
Okay, so, Amelia, we have a I want to make sure that I'm understanding everything that's happening. So two years old. You're diagnosed in Ecuador with autoimmune hepatitis, which, yeah, I have in front of me, a chronic autoimmune disease of the liver that occurs when the body's immune system attacks liver cells, causing the liver to be inflamed. Common initial symptoms include fatigue muscle aches are signs of acute liver for inflammation that include fever, jaundice, right upper quadrant abdominal pain is that now I know you were to then but that's a correct description of what? Yeah,

Emilio 5:09
that's sick. We're description and you may add there that you get yellow. You literally get colored yellow, your eyes are bright yellow. And you can tell it from that. You have seats. I used to do that with other people. It's a thing of mine. But yeah,

Scott Benner 5:28
here's the craziest part that this blurb here says that people usually get it between 40 and 50 years old.

Emilio 5:35
Yeah. And it's it's very common in women and not so common for men, but do happen. It does happen.

Scott Benner 5:42
Okay, yeah. And then growing up between your diagnosis with that and when you're diagnosed with type one at 13. What What's your life like with autoimmune hepatitis?

Emilio 5:54
was very hard because as I told you, it was like moving hospital to hospital. I never had like a normal life until I was like 1617, I think. Yeah, but it was always been the hospital, the hospital and because of the of the 3d and for the for the ultimate hepatitis, I couldn't see a lot of people. Because I didn't have my I didn't have an in a very hard immune system. So I was very delicate.

Scott Benner 6:21
Did you spend long chunks of time in the hospital? Or were you just in and out a lot?

Emilio 6:27
In and out a lot. Sometimes I used to spend a couple of months back and forth

Scott Benner 6:34
getting treatment or because you had a flare up? That was debilitating you getting threatened? Okay, what were the treatments? Like?

Emilio 6:44
Basically, they bump you up with cortisone. Like, ah, holder of cortisone to the vein. And,

and yeah,

Scott Benner 6:56
and that kind of drives it away. But it also has other impacts on you. Right, do you?

Emilio 7:00
Yeah, the the other impacts are very hard, very hard to because at that time, at the time being we did not expect the courtesan to do bad stuff to me. But it, it has done it through the time. So now I have a couple of things in my body for some people that have my vision is very blurry because of that. Also, a cortisone in the long term cause is organ failure. So But what basically, we thought that it was a the causes for the cause for Taiwan was the cortisol.

Scott Benner 7:44
Oh, really? Like the Yeah, the cortisone could have could have started the type one diabetes. Yeah. Yeah, that's interesting. When you're diagnosed with type one, you're back in Ecuador at that point.

Emilio 8:00
Yes, I was here. When six months after I was diagnosed, we went back to Argentina because we we always loved the Met the medics or the doctors there. So we went back there and they help a lot, but a lot. Also, I had when I came back from the coma because I was in a one week coma after I was diagnosed. I had neuropathy. I was I was falling. Yeah. So the thing that neuropathy does to your bodies is hard. It's hard to explain because your muscle memory doesn't work as well as if it's you have a healthy leg or a healthy body part that being is being affected by the neuropathy. So when they tested for these things, a hearing Nikola the best his current through your nerves. So my leg decided to remember the electric shocks at 3am for five months. So the pain was awful. So I was dealing with Taiwan, I was dealing with a neuropathy, so it was a very hard six months when I started.

But we went through it.

Scott Benner 9:15
So you get these like, like constant shocking pains that are Yeah, that go on for hours.

Emilio 9:22
Exactly. Yeah, they're like electric trucks. Wow.

Scott Benner 9:25
And painful to what degree like from a scale of one to 10 Where would you

Emilio 9:31
and I need I will think

Scott Benner 9:33
wow. And yeah, you're young boy at that point then too. Yeah,

Emilio 9:37
I was 1414 13 at the time. Yeah.

Scott Benner 9:43
Geez, what's I'm trying to figure out where to jump to but where does What does diabetes care? Tell me again? How old are you now? Now I'm making your 18 now, okay. Yeah. So, so how did your diabetes care start but what did they give you too? Who? Like how does it work in Ecuador,

Emilio 10:02
it works pretty pretty much the same way it does in the US and the whole world. But we are very analog here. So we use the blood blood checker meters and and we use Spence or, or fringes but because I have other friends that are very, very into the subject, they have introduced me into technology of of these and it's amazing now I am with the I am checking my glucose with the FreeStyle Libre. I don't know if you know knowing that device. I know it. Yeah. Yeah. And I have I had used the Omnipod. Also.

Scott Benner 10:45
Really? Yeah. How did I excel that I

Emilio 10:49
love it? But the thing with the Omnipod is that the the insulin reservoir is very low for me. Because I use a lot of insulin because of the cortisone because, and and yeah, it just works one or two days for me

Scott Benner 11:05
how it's used in about 200 units in a couple of days. Yeah, you're on the cortisone still to this day.

Emilio 11:12
Yes. We tried we try we did a lot of with a lot of other bills, but they don't work.

Scott Benner 11:18
Okay, doesn't work. Well, what's your diet? Like? What do you eat in the course of a normal day? A pretty

Emilio 11:24
much normal. Now I'm very control in my in the hepatitis thing. But I got COVID At the start of the year. And my, um, my hepatitis went crazy, but now it's controlled. But I never had like, a special diet or like, change. changed my whole life through it. Gotcha. It's

Scott Benner 11:51
so what so what's, um, tell me what average meal looks like in Ecuador just so people can understand?

Emilio 11:56
Well, basically, it's like rice. And pretty much every plate has rice, and depends on what else you want. Because a you have a sacred boil things like that. It's like a chicken stew. You serve with rice and plantains. Yeah. And that the chips. It's pretty much normal.

Scott Benner 12:22
It's a common meal. You know, I don't want to get too far off topic here. But yeah, I the Galapagos Islands are like my. That's my dream vacation. Like that's

Emilio 12:32
Oh, it's amazing. It's amazing. Yeah, you've been? Yeah, I have been there. I've been there.

Scott Benner 12:40
I don't know if I'm making more of it in my head than I think but it it's the one place I'd like to go that I've no,

Emilio 12:45
no, it's it's very beautiful. It's like this sort. It's pretty much that time doesn't doesn't pastor Yeah, you can spend hours in sovereign the time won't pass. It's very rare. I think. I don't know if it's my my thing. But when I was there, I think was doing soverom The time that we're past. When? Yeah,

Scott Benner 13:09
how often do you see a doctor for the type one? For the type one?

Emilio 13:13
I'm seeing a doctor every one month? Once a month? Once a month? Yeah, I'm pretty much control on it. And if I have a problem, I usually tax tax him and ask questions, but at the time now I'm very, very controlled.

Scott Benner 13:33
What are they measuring success with? Are they using an E one C or?

Emilio 13:37
Yeah, we usually in a onesie we you seen the? The glucose? Like the the amount of of test in the month?

Scott Benner 13:48
Yeah. And look at to look at that you looked at do you like how do you think of it on yourself? Are you trying to stay within a range? Do you?

Emilio 13:56
Yeah, I usually I usually stay within the range. My range is between 80 and 160. And it goes through that I have good days I have also have a Facebook. Yeah, pretty much the time it says

Scott Benner 14:11
how how active you are, are you able to be with the hepatitis like exercise a

Emilio 14:17
very, very active by the way. They they're they have recommended me and they always do that I need to do more exercise than I usually do. And they push me through it also because of the of the mixture between the cortisone and the insulin. I need to do more because my body tends to reject insulin. Okay. Yeah. For example, I am using also transceiver I don't know if you know more than insulin. I do like a long until RT one. I use 68 units of it every day. So I use a lot. How much

Scott Benner 14:56
do you weigh? A 150 Wow. Yeah, so that's a lot for the cortisol, then yeah, okay.

Emilio 15:04
Exactly. Yeah. So also they didn't have a rapid I use a half a cartridge every three weeks now, every three days, sorry, every three days. So, yeah, a lot of us suck a lot of

Scott Benner 15:20
how do I have a couple of questions, I guess how did all of this impact you going to school? Are you able to still go to school when you're young?

Emilio 15:27
No. Oh, my, my first years we ultimately hepatitis on the diabetes. I usually went, like 90 days of a year. I will think so. So I was not very, very active in school. I had lessons through a computer. Also, because I was not in the country. And making the trips was very, very difficult with paper. So we did it with a computer.

Scott Benner 16:01
Okay, yeah. So you did a lot of online stuff back then. Yeah, exactly. Yeah. So have you graduated?

Emilio 16:08
Yeah, I'm graduated. And I'm going to start college there next year.

Scott Benner 16:11
That's what I was wondering what what are you thinking of going to college for?

Emilio 16:15
A business management? I think

Scott Benner 16:21
it's hard to know when you're 18, isn't it? Yeah. I think you just pick something that you're good at that you enjoy. And then you kind of hope that during college, you can configure Yeah,

Emilio 16:34
you're gonna you're gonna like, like, figure out if you can do it for the long run. Yeah.

Scott Benner 16:38
Or hopefully, you'll learn something that will give you some interest that you can follow along. How long? Was it a very expensive process for your parents the treatments over time?

Emilio 16:49
Yes. And no. The things we did in Argentina, they were out of pocket for my parents. But here as the insurance covers life in the 40% 50% of it, but it's it's not so great, because if we say leave it, the insurance doesn't cover it. They only bought the insurance doesn't cover it. Because it's not like Frasier here and Nick weather and getting the stuff here. It's also hard. What I do is like, I had a friend in Colombia, so in Colombia, they buy it from from a pharmacy and they send it through through plane, then someone needs to pick it up and then drive it here. Yeah, it's a process. With the Omnipod. I found a website I could buy them from because my insurance won't allow me to use it. I don't know why. So yeah, I need someone from the US to buy it and then send and send an airplane ticket.

Scott Benner 17:54
It's a lot. Yeah, yeah. When you were going to Argentina as a child, how did you go? Did you drive or fly? Or what was that like?

Emilio 18:01
Well, we will fly. Yeah,

Scott Benner 18:02
I'm just gonna say it's a really I mean, it would be an amazing trip. Yeah.

Emilio 18:09
It's eight hours, six hours.

Scott Benner 18:12
If I recall. Wow. What was one of your parents with you all the time when you were younger?

Emilio 18:20
Yeah, my mom used to be there a lot. But when we went the first time we went in Argentina when I was like, really bad with autoimmune hepatitis. My dad had a problem with the with the ID so he couldn't travel. So I was with a mom and the doctor and then the day we arrived, I had six months come, I went into the entrance, six months.

Scott Benner 18:46
Was that was that something that happened naturally? Or did they put you into a medical coma?

Emilio 18:52
It was a mixture because my body was like shutting down. They were trying to help me so they induced me into it,

Scott Benner 19:02
but it was a mixture of it. Wow. Six months?

Emilio 19:05
Yeah. My parents thought I was at so I was like, brain dead? I would think but yeah.

Scott Benner 19:12
Yeah, I was gonna ask you that that was actually going to be my next question. Which is have you since all this has happened now that you're older Have you ever spoken to your parents about all this and and heard their side of what was happening?

Emilio 19:26
We we have done it through the years we have speak of it because it's like my lifestyle. Yeah. But it's it's like a normal thing. Now. We don't view it as a different thing. Not a big deal. Yeah, not a big deal bug. My cousin's, for example, they do think that I was going to die. So now that I'm 18, and our body I'm getting out and living my life. They always tell me like, take care of it. We save you once. We don't want to save you twice. So yeah,

Scott Benner 20:01
It's enough for you. We're done. We're done helping you, right?

Emilio 20:03
Yeah, exactly.

Scott Benner 20:05
It's amazing. How do you Yeah. You said you found the podcast through a friend? How Yeah, how does that all happen?

Emilio 20:13
Because I was like experimenting with, with all this technology. I found a friend of mine who had who his son has, has become diabetic. And he he had the insurance to buy all the stuff. So when the first day he had like, well, the second week, I think that he has, that is another virus, they started getting the Dexcom and the Omnipod. Okay, so

Scott Benner 20:44
these are friends in Ecuador or friends in another,

Emilio 20:47
you know, in here and there where they do travel a lot, so they have the capability to buy it from there. Also, the insurance gave it to them, so it's much easier for them.

Scott Benner 20:59
Okay, so some people's insurance will cover it and some people's won't. Exactly. Okay. All right. What will happen? Will your your parents be able to continue to help you while you're in college? And what do you think about when you're out?

Emilio 21:15
Yeah, they are Joe helping me. They don't think they're gonna stop. Because I did sign being now I am working, but I don't have like, like a really hard job. So it's like a part time. Yeah. So yeah, they're they're still helping me. And they would help me until I was 40. So I don't think that's a problem. You

Scott Benner 21:39
don't think they're gonna bail on you?

Emilio 21:41
No, no, yeah. They're,

Scott Benner 21:45
I mean, like, I have to tell you this is no, no, I'm not making this up just because you're on. But for the last, you know, in the last year, or so, I've been wondering why I'm getting more downloads in Ecuador than I usually do. And I guess I'm figuring out that it might be you. So

Emilio 22:04
it might be me or my friend or a couple of friends that are diabetics that we will listen to the podcast because it helpful, it's helpful because of the, the juice box thing. Because if I don't know the correct amount of insulin, okay, I'm gonna add for use books. And that has been very helpful. Very helpful.

Scott Benner 22:27
Really, you might not understand the gravity of what I'm saying to you, but that I thought of something like 10 years ago in a gymnasium while my daughter was playing basketball, and then I eventually said out loud into a microphone that somehow reached you in Ecuador is mind blowing to me. And that you said, Yeah, it's amazing. Oh, man, it just gives me chills when you say it. Like, it's just it's absolutely crazy. Like, you didn't have diabetes, when I figured that out. You know what I mean? Like it's, yeah. And we are we live about as far away from each other as you know, somebody could. And it's just it's really some I know, you grew up with the Internet. Like, it's never not been there for you. Yeah, but I remember it not existing. And so it's really, it's an awesome thing. Yeah, that's

Emilio 23:15
a good thing for me, because I was like my escape in the hospital rooms. And so all the threatening was like watching videos for YouTube or internet or praying my phone. So it was, it was so it has always been a part of me.

Scott Benner 23:30
Yeah, that's excellent. Do you have any idea where your friend who told you about the show found out about it?

Emilio 23:37
A, I think through US Soccer. Because he also does a he also has freedom for his son in the US. And I think the doctor recommended to it.

Scott Benner 23:51
Okay, so when he was in the US visiting a doctor, the doctor told them about it. Yeah, I think so. Yeah. So well, that's really crazy. Okay. Well, what you said you think things are going pretty well for your for your care, like, what's your agency now

if you've been thinking about getting an insulin pump, but don't want all that tubing, you should check out the Omni pod dash, it's tubeless go to Omni pod.com forward slash juicebox. To learn more. The Omni pod dash is a number of things. You can use it let me tell you what you can do with it. Showering, swimming, that's all good to go. Exercise, weightlifting running around all good to go. You don't have to take it off for those things. Those tubes pumps often have to come off in scenarios like that leaving you without insulin, not good. Omni pod doesn't have tubes, so you can constantly wear it without interruption. On top of all this, you know you might be thinking alright, Scott, it sounds good, but How do I know for sure before I get started? Well, a free 30 day trial is a good, good place to begin. So you can try the insulin pump that my daughter uses without any risk@omnipod.com forward slash juice box. If you like it, it's simple to keep going. And if you don't want it anymore, you get to the end of the 30 days, you're like, not for me, no problem. Nobody's gonna bother you. That's the end of that. Nice and easy up to you. That's how long the pod wants it to be. For full safety risk information and free trial terms and conditions. You can also visit omnipod.com forward slash juice box Dexcom G six. What is it? Why do you want it? Let's dig in. The Dexcom G six is a continuous glucose monitor, monitor where there goes the axon. It's a continuous glucose monitor. There you go. It's a small device that you where it reports your blood sugars back to your phone or to a receiver. When I say phone, I mean Android or iPhone. Not the one with the rotary thing like your grandma had that. That doesn't work that way. But if you have an Apple iPhone or an Android product, it is very likely that the Dexcom G six will work for you. If it doesn't, it's okay. Use the receiver. Why would I do this? Or are you more specifically? Oh, I'll tell you the speed and direction and number of the blood sugar for the user. Just like this, I'm picking up my phone. You couldn't hear it because I'm stealthy. I've swiped up. And I've touched an app Arden's blood sugar is 71. So she's also diagonal down, which means her blood sugar is falling a little bit. She's in the shower, we've already taken care of it. How did we take care of it? Well, 10 minutes ago, she was 91 Diagonal down. And I said, Hey, get in the shower, we should probably do something about this. And we did that 70 one's going to stop. I'll watch it happen here on my phone. comfort and convenience, safety and security, health. These are the things that we personally get from the Dexcom G six. There are results, of course, and yours may vary. But if you'd like to find out more, get started today, or see if you're eligible for a free 10 day trial. Go to dexcom.com forward slash juice box. There are links in the show notes of your podcast player. And links at juicebox podcast.com. If you can't remember dexcom.com forward slash juice box and who could forget Omni pod.com forward slash juice box. So from the beginning when I said check out T one D exchange.org. Forward slash juicebox. Take the survey. I could do these links in my sleep to understand me. You could keep me awake for 72 hours and then say Scott, how do I find out about the Dexcom and I'd say dexcom.com forward slash juicebox. Right before I passed out from being so tired. Let's get back to Emilio.

Emilio 28:11
My aliens now, I don't know that my doctors know that. I usually don't look at it because I will get crazy of of the numbers.

Scott Benner 28:21
Okay. Is that something your parents pay attention to? And they don't

Emilio 28:25
know. I have to tell them evenly. They're even that dumb. Check my numbers. Let me take care of it on my own way. Because I don't want them to be preoccupied with a lot.

Scott Benner 28:39
You're worried that they'll they'll get consumed with helping you.

Emilio 28:44
Yeah, they had done it. So I don't want them to go through that again.

Scott Benner 28:49
Yeah. Are you trying to protect them? Yeah, yeah. Do you think it was hard on them? Oh, yeah.

Emilio 28:57
His son. Maybe that is some good died two times.

Scott Benner 29:04
Okay, low blood sugar. Yeah.

Emilio 29:08
Because, like, can you

Scott Benner 29:11
repeat the question I can send you did you almost pass from low blood sugars? Or because of the hepatitis? You just think your parents have been through enough in gym?

Emilio 29:21
Yes. And yes. Because of the hepatitis. Like they come on. I think the doctors you're told my parents I was I was gonna die. I was gonna die. He's not gonna make

Scott Benner 29:31
so they had all through that one time already.

Emilio 29:34
Yeah. And then the next time and the diabetes thing. I was very bad. Bear bed.

Scott Benner 29:42
Yeah. When when you were at diagnosis. Yeah, yeah. Well, it's like, oh, Amelia, this is crazy. I have to take this call. Hold on one second. I really apologize. I don't know where doesn't usually happen. I'm going to take my headphones off. We're not gonna be able to hear me.

Emilio 29:56
Nowhere to work. Hello.

Scott Benner 30:01
Okay, so sorry about that everybody. I got a phone call I had to take. And Emilio I apologize. What were we talking about when that happened? Because I got I got spazzed out when I saw my phone, right?

Emilio 30:14
We were talking about a thing. Like taking a taking a say with

Scott Benner 30:20
my parents. Oh, yeah, right. Okay, so you felt like they had been through enough so you're doing it. But now you also don't want to know, tell me more about not wanting to know you're a one say

Emilio 30:30
it's not wanting to know my IOC it's because they the calculus for that thing. A, I don't usually see the exams I just given to the to the doctor or my or their results just get sent to the doctor. So she checks. She checks if I'm okay.

Scott Benner 30:50
And just says you're okay.

Emilio 30:52
Yeah, basically. So I don't I don't get my mind into numbers. Because for one thing, I don't like numbers, and also get very frustrated if I'm not in my range.

Scott Benner 31:03
So if you Okay, so if you were to hear that the number wasn't what you wanted, it would be frustrating to you, it

Emilio 31:09
will be frustrating. And I will like, shut down and stop everything I'm making the fix itself. I say I'm just taking it easy with it.

Scott Benner 31:18
So you just think of it as keeping things between you do your best day to day to keep yourself in that range that you mentioned earlier. Yeah, exactly. Do you use any of the ideas from the podcast in your management?

Emilio 31:32
Yeah, so as I mentioned, you use the useful thing.

Scott Benner 31:36
A Pre-Bolus?

Emilio 31:39
Yeah, I do. Pre-Bolus Yeah, that's one thing. My mornings were awful. Because before that, because as I just wake up, my body reacts differently. My insulin sensitivity in the morning is even higher than in during the day. So for my morning, it's one unit for every three grams of carbohydrates.

That's it.

And if I inject a for the meal, it doesn't work. So I need to Pre-Bolus and add 10 more units or eight more units. depends on the amount of food I ate the day before. Okay. But yeah,

Scott Benner 32:17
so in the morning, your insulin ratio could be even stronger than one to three, it could be almost one to two or something like,

Emilio 32:24
oh, it's one to three and during the day, it's one to seven,

Scott Benner 32:28
one to seven. That is a big difference. Okay. Your Basal insulin, do you ever look at your graphs overnight to see if you're stable overnight? And, and, and other times when you don't have food to see where your Basal is? Could be at? Yeah.

Emilio 32:44
So if I have food at night, it tends to go high, and then drops on the state level. But if I don't eat anything, it goes straight. It's a straight AD AD. Oh, wow. That's it. Yeah. It doesn't move from there.

Scott Benner 33:04
I mean, you're doing a really good job because you're using me you're having to use a lot of insulin because of the cortisone. So that's, um, it's it's it's difficult, you know, like, do you ever have a time where you're not on the cortisone?

Emilio 33:18
A,

no have never been out of it. We have, like, tried to make the transition from it. But it hasn't, like work out.

Scott Benner 33:28
So it's, it's an everyday situation. Yeah, you get it by injection or by a pill.

Emilio 33:33
No, I take pills. five milligrams

every, like once a day, once a day here every night

Scott Benner 33:41
is Is there anyone else in your family with autoimmune issues?

Emilio 33:46
A my grandma, from my father. She has lupus. And we think it all came came from her. Okay, so it comes down because from my mother's side, I don't have anything and from my dad's side, my grandfather doesn't have anything. It's just my grandma.

Scott Benner 34:06
Okay. Do you have any other autoimmune issues besides the hepatitis and the diabetes?

Emilio 34:13
A No, no. Okay. No.

Scott Benner 34:16
Did they test you for celiac disease for thyroid issues, stuff like that?

Emilio 34:23
Yeah, they always do that. And it always comes right. I don't have anything of that. Excellent. Because I'm very paranoid of it. So I always like I'm checking to see versing well, because I have like the thing in my head that tells you you're gonna die, you're gonna die. So I always check

Scott Benner 34:40
is that is that really something do you feel like that frequently?

Emilio 34:46
Not frequently, but if something like I feel I feel like steak or something like that, I think should I? I may have even worse thing that I have now. So,

Scott Benner 34:58
so yeah, so if your arm starts to hurt Are you you're pretty sure it's gonna fall off that kind of stuff.

Emilio 35:02
Yeah, so I'm very paranoid of it.

Scott Benner 35:06
You play any sports? Yeah, I do

Emilio 35:09
was like normal sports. I don't do number sports, normal sports. The only normal sport I do is swimming. Okay. And then the other is i a scuba diving,

also. Oh, that's

Scott Benner 35:24
cool. Yeah. Yeah. Scuba with? Do you do it in in groups? Or do you do it?

Emilio 35:30
Yeah. In groups you can you can dive alone.

Scott Benner 35:34
Where do you learn how to do that? How old were you when you learn how to scuba dive?

Emilio 35:37
A it was around when I was 1112.

Scott Benner 35:41
Okay. So before diabetes, you knew how to do before diabetes?

Emilio 35:45
Yeah. And he was very helpful. Because, as I told you before, I didn't have my leg for like six months when I was in recovery. So I couldn't walk, but I could swim. And I could die. So that was a thing that, like, pushed me to go further. Was like, dive in. Oh,

that's interesting. Helpful. Yeah.

Scott Benner 36:07
So you could so part of your therapy or just to keep your mind, right. You would swim when you couldn't actually walk? So were you in a wheelchair for a while?

Emilio 36:15
Yeah. I was going through school in a wheelchair, using crutches to go anywhere.

Scott Benner 36:22
Do you have brothers or sisters? Yeah,

Emilio 36:24
I have brothers and sisters. Okay. Big Family. Ah, no. It's me. My sister and my brother are three three of it. Yeah.

Scott Benner 36:33
Are you the youngest oldest in the middle? Yeah, I'm

Emilio 36:35
the youngest one.

Scott Benner 36:36
Who the youngest? Are they much older than you? Are they just a little older?

Emilio 36:40
I mean, older. My brother is 25 and my sister's 21. I think,

Scott Benner 36:44
okay. Are they at school or on their own? Are they at home?

Emilio 36:47
Yeah, they are on their own. Okay.

Scott Benner 36:52
What about let's see what else you dating? No, I'm not. It's a good idea. Yeah,

Unknown Speaker 36:58
it's better. Yeah.

Scott Benner 36:59
It's a lot of trouble sometimes. Exactly. Hold on a second. Give me one second.

Yeah, I know there's times I wish maybe I wasn't dating. Like the person I decided to date is bothering me right now. For instance, they know I'm talking to you still are asking me questions that have nothing to do with

Emilio 37:27
Yeah, also also, because now I like fixing my life in a sort of way. Because of the whole, like, current quarantine thing and all of that. And like starting my life again. Yeah. So right now I'm like, being amazing. And having my life and being next to someone. It's, it's not not a thing in a plant.

Scott Benner 37:47
Hey, I want to ask you a little bit about having COVID. So how long ago did that happen to you?

Emilio 37:53
That happened I think in February of this year.

Scott Benner 37:59
Okay, recently.

Emilio 38:01
Yeah, recently. And I, I gotta, I gotta ECU because I was symptomatic.

Scott Benner 38:11
Okay, so you are positive and didn't have symptoms.

Emilio 38:14
Yeah, but the sure thing was very bad, baby. But that was the that was the thing that made me realize, Oh, I'm maybe had good. Oh, okay. And then you got because then I got tested, and we all came back positive. Oh, the whole family. The whole family. Me and my father and my mother, because my brothers doesn't live here anymore.

Scott Benner 38:36
Were there vaccines available to you? Or no? Yeah, the word yes. Did you take

Emilio 38:42
a word? And because I have like a little card that says that I'm disabled. I had the Pfizer display servicing device or vaccine.

Scott Benner 38:51
Yeah. So you Okay, so you had the vaccine, but then caught COVID But we're asymptomatic.

Emilio 38:58
No, I covered before the vaccine. Oh, before

Scott Benner 39:02
the vaccine. Okay. So now you have Yeah, well, now you've got Yeah, yeah.

Emilio 39:07
Yeah. We got the vaccines, I think two months later than the US. Oh,

I see. All right. So it was like the whole time.

But having COVID We diabetes on my hepatitis was, was hard. Because like my ratio went from having one to seven to all the day to having one to five. I needed to Pre-Bolus like 30 minutes before.

Wow. Wow, it's sad. Really. The sensitivity of it was

off. So yeah, how long is also good? I'm sorry. I also needed to do a lot of exercise.

Scott Benner 39:48
Just to help bring your blood sugar down. Exactly. Yeah. How long did the COVID impact you for how many days until now? Is it been it's been all these months? It's been giving you trouble. Yeah. Oh, okay.

Emilio 40:06
With hepatitis because diabetes control now.

Scott Benner 40:11
You will that was gonna be my question like, how scary was it with the hepatitis to get COVID

Emilio 40:17
awful because we thought that I was I was gonna die. But he was the exact same opposite because my parents got bad and I was the one that was helping them. So I was 17 at the time. And I was like, driving the car from working, doing this doing the work. So for my dad like getting out and going out. We COVID trying to not get in touch in touch with people, but we need it to work. So that was the thing.

Scott Benner 40:49
How old your parents

Emilio 40:51
my dad is 54 and the mom is 47 I

Scott Benner 40:57
think it hit them very hard.

Emilio 41:01
My dad, my dad needed to use oxygen. And because I had like a like an aquarium hobby. I do have oxygen bottles here in the house. And I feel them up because I knew something in my head told me get the action in swaddle field if anything happens. So that was very helpful.

Scott Benner 41:23
You have what you have oxygen bottles because you have Did you say you have an aquarium hobby? Yeah,

Emilio 41:29
I have also crimes. Okay.

Scott Benner 41:31
And so you you gathered up extra oxygen in the house thinking that that might be an issue around COVID. Yeah, exactly. Is that's a pretty smart

Emilio 41:41
I that my dad use. I had three tanks and my dad uses in three days.

Scott Benner 41:46
No kidding. Yeah, he uses it. Are they recovered now?

Emilio 41:51
Yeah, they recovered now. They don't have they don't have backlashes or anything like that. I'm the only one who ever

Scott Benner 41:57
okay. And so it's stuck to you longer, but just what was your biggest problem? The impact that had on your blood sugar?

Emilio 42:06
Well, yeah,

the biggest problem was that because I, my my glucose was between 302 100 and they wouldn't go down.

Scott Benner 42:15
Oh my god. Wouldn't it though? For how long?

Emilio 42:19
For a month?

Scott Benner 42:21
No kidding. That's terrible.

Emilio 42:23
Yeah, I was awful. And I was feeling and I was feeling bad because of COVID. And because of having high blood sugar.

Scott Benner 42:30
Yeah. Well, yeah. Tell me about that. Like when you're that high for that long. It. The impacts on you are a lot, right.

Emilio 42:39
Yeah. So you don't want to get off your bed you are without energy to do anything and you cannot eat anything because it will go higher. And you cannot smell anything because of COVID

it was a whole flurry of things.

Scott Benner 42:55
And you had to but at the same time you were taking care of your parents. Yeah. Were your brothers and sisters home or was it just the three of you at that point?

Emilio 43:03
No. And my brother a my brother's girlfriend, mom also was bad. So my mom between COVID I'm feeling bad was also helping her.

Scott Benner 43:16
Wow, that's terrible. Parents. Did any of you ever end up in the hospital?

Emilio 43:22
My dad was about to go to it. But we call the doctors and they told us if he goes to the hospitals, he's gonna die. He's not gonna He's not gonna survive. He goes to the hospital. Wow. So it's better. It's better to keep it in the house. And keep the watch.

Scott Benner 43:37
You guys got really lucky, huh? Yeah, sounds like you. You had a big part of helping everybody get better to where you? You were you cooking and doing everything like? Yes,

Emilio 43:47
I was. I was cooking and all stuff. in quarantine. I like improve my core math skills. Miko but yeah, when I got COVID Also, I did that because I wanted to test what flavors could I like smell or feel? I gotcha. As a spoiler. No, no one. Neither of them.

Scott Benner 44:10
When you lose your sense of smell. Can you eat food that you don't like?

Emilio 44:15
I used to chew

Scott Benner 44:16
on garlic. Hoping to taste something.

Emilio 44:19
Hoping to say something. Yeah. Also no onions. And I didn't vote anything.

Scott Benner 44:24
No, that's crazy. Yeah, that's really something the doctors come to the house to see you or was it all over the phone?

Emilio 44:32
It was all over the phone.

Because we were we were we were in lockdown here. Yeah. And we had a curfew that started. I think at the time we had a curfew that started at 3pm.

Scott Benner 44:45
Okay. How How was COVID in Ecuador? Is it is was it a real big problem or did just get you guys or?

Emilio 44:54
Yeah, it was a really big problem because people used to body bodies. dead bodies appear on the streets. No one knows why the people like started to feel bad on streets. Well, they were they were piling up. And yeah, it was it was very awful scary. Yeah, very scary here.

Scott Benner 45:15
You've been through a lot in a short amount of time. Yeah. Do you ever think about that, that you've probably gone through more than most people will in their whole life? And you did it?

Emilio 45:25
Yes. And I use it. I use it as a push for my life like to keep going. Like, if I have fought this hard, why would I stop now?

Scott Benner 45:37
Yeah, that makes sense. Like, why am I here? I don't know if you've ever heard the phrase In for a penny in for a pound. But it's the idea of you went this far. You might as well not give up. Right. So yeah, that's that's really something, do you? I guess you don't remember yourself prior to any of this. Like, it's a very, you have a great way about you. And, and a great, you know, there's just a great feeling coming from you. So do you have any idea why you feel that way? Like why, like, why aren't you depressed and sitting in your room? Do you know what I mean? Like, why did you choose this path or

Unknown Speaker 46:12
a

Emilio 46:14
I had been depressed. When I was diagnosed, I did have depression was for like a month. But it passed me as I went through it. But like my mind works in a way that I usually see the better in things that are good. And things. I'm not that bad. Yeah.

Scott Benner 46:41
Your English is amazing. Well, thanks. Have you ever been to America? Yeah, I

Emilio 46:46
have been there. Okay. Sounds you?

Scott Benner 46:49
I mean, we've been talking for 40 minutes. And I've only said one thing once that you said, Can you repeat that? And I've I've not like, I haven't changed how I speak for you? Or do you? Not? I mean, like, I haven't taken words out of my vocabulary or anything like that. Where do you learn English?

Emilio 47:05
From school? My whole like, room, I have a Google Home and it's everything in English. So I push myself to speak English and is driving English and, and being English.

Scott Benner 47:18
What's the what's the language of Ecuador? It's what do you Yeah, I always dream about taking the pro tip episodes of the podcast and and translate into Spanish, but I don't know. I don't know how to do that. People tell me that there are so many different kinds of variations of the language that

Emilio 47:36
yeah, no, that's that's a particular thing here. Because we have like fried regions, right. So it's like the cost ghost thing. And then we have the highlands. And then we have the the jungle like the Amazonia. And every single, every single song has a different language has a different way speaking. Like Daniels, they speak in a very different way. They speak like singing and Queen canas. It's another part of islands they also speak very differently. So it's a mixture of

Scott Benner 48:11
is the voice is it so different that you would like when you go to Colombia or to Argentina? Do you have trouble talking to people in Spanish?

Emilio 48:19
Yes. And in Argentina, there are like, words we use in our vocabulary here near brother. We are very, very bad words in Argentina. So yeah, it's it's it's a shock. It's a culture shock. But it's amazing. Like knowing how they talk.

Scott Benner 48:38
Tell me a word. Use it. Use the word in English. But tell me a word you would use in Ecuador. That would be a bad word in Argentina.

Emilio 48:47
Like taking the boss here, it would mean like Cohoes Yeah, like, but in order to trust that we're not nagging Tina. Yeah, that will translate to a very bad thing with the boss. Okay. Yeah,

Scott Benner 49:05
let's all just wonder I don't want you to tell me well just leave it up in the air like that. Yeah, exactly. That's funny. What about friends? Like you're not dating? Do you have do you have close friends?

Emilio 49:15
Yeah, a close friend group. I have recently made friends because I didn't have a social life. I started my social life when I was 17. Yeah, I didn't have friends through all of this. So I recently have friends.

Scott Benner 49:32
Your vote? Do you find yourself feeling more mature than your other friends?

Emilio 49:36
Yes, I love a lot of it. Because I'm like the father of the group of my friends. I usually take care of them. I usually drive them I usually like give them advisors and help them work stuff.

Scott Benner 49:49
Yeah, you've been through a lot. I mean, in a way that that makes me feel like you're going to be very successful as an adult. I don't I can't imagine what else could happen to you that you wouldn't be able to deal with You know?

Emilio 50:00
Yeah, now I'm prepared for pretty much everything. Yeah,

Scott Benner 50:04
no kidding. I think you're, I think you're 100%. Right? Yeah. Is college going to be online? Or is it or is it something you're going to?

Emilio 50:15
I want to go with, because they want to choose. They had a nice campus and they had a pool and they had a gym and had a lot of stuff. But it's like, 10 minutes from my house. So it's so far.

Scott Benner 50:27
So you'll live at home, but go to college? Yeah. Oh, that's,

Emilio 50:30
that's sad path. That's the way it works here.

Scott Benner 50:32
Nobody lives at college there. Yeah, gotcha. Okay. My son just went back to school. And I miss him already. So it would be nice if he had to come home every day. I would like that.

Emilio 50:44
Yeah, that's that's the same. My parents appreciate a lot also.

Scott Benner 50:47
Yeah, no, I imagine. So. Do you imagine what as an adult that you'll live in Ecuador?

Emilio 50:55
No, I want to I want to get out of

Scott Benner 50:59
okay, where do you want to go?

Emilio 51:01
I want to go to Australia or Indonesia.

Scott Benner 51:05
Oh, I have. I have listeners in both of those places. So you can definitely keep listening to the podcast if you leave.

Emilio 51:12
Yeah, the situation here is it's very bad. Now we are next to Mexico in crimes. Okay. Also in like politics and other stuff. We're very big behind all the other countries.

Scott Benner 51:27
So politically, it's something you'd like to get away from.

Emilio 51:31
Yeah, also the violence here. People get killed in the streets every day. They get robbed them they get farther and it's it's awful.

Scott Benner 51:40
What makes you think about Indonesia?

Emilio 51:44
Because as I told you, I love crimes like like, the ocean. Yeah. I love it. So being like next to the ocean being like next to the, to the raves. It will be my dream life.

Scott Benner 51:56
Yeah. I just I'm thinking of a person that I just spoke to recently that lives there who listens? Who listens to the podcast? Man, it'd be two of you. You could find each other. Would you be able to carry on your medical care anywhere? Do you think?

Emilio 52:11
I think so. Okay, I think so. I don't know. I don't know how they how the insurance things work in other countries, because I hadn't never liked this. But I think I will Korea. And so.

Scott Benner 52:21
So for the for the hepatitis part. It's just the pill that you have to keep up with. Yeah, it's just a pill. And are you? I mean, extra COVID. Aside, are you extra careful about trying not to get sick, or is that?

Emilio 52:38
No, I don't usually do that. I used to do that. But now we went through a pandemic. So I don't I don't think we need to be debt now. So I was just keep going on

Scott Benner 52:51
start feeling like if you can make it through this then everything else. Yeah, pretty easy. Exactly. Do you wear a mask when you go outside?

Emilio 52:57
Yeah, I do wear a mask. But for example, if I'm with my friends, I don't wear a mask. Because we're all vaccinated.

Scott Benner 53:04
Oh, you're all vaccinated this point? Well, you have now you have the vaccine. And you have I imagine antibodies from actually having COVID as well.

Emilio 53:13
You're gonna we're gonna have the third dose here like ething instruments.

Scott Benner 53:17
You're gonna do? Yeah, you're gonna do the booster shot. Yeah, I am, too. I'm gonna I'm gonna take it as well. I didn't I didn't get Pfizer I got j&j But I'm gonna I'm gonna take a booster as well. Oh,

Emilio 53:29
I got a friend who got that?

Scott Benner 53:31
Yeah, it was actually. I mean, I mean, I guess I don't know how well it worked other than just how you I haven't had COVID. And, you know, did you did you get any other side effects of it? Or from the shot? No, I didn't have Yeah, I had no problems with the vaccine at all. Wow. Okay. My arm hurt for a couple of hours. But that was like,

Emilio 53:49
Yeah, really? Oh, I have friends who got very bad headaches spamming

Scott Benner 53:54
all those headaches after their vaccine,

Emilio 53:57
headaches migraines, they couldn't sleep the night began day one.

Scott Benner 54:03
Oh, I feel very grateful. That did not happen. Yeah, actually, my son and my wife had j&j as well, and none of us had an issue with it at all. And Arden had Pfizer. So she Okay, yeah, she did two doses of Pfizer and she didn't have any trouble either. Yeah, no, I

Emilio 54:19
didn't have any trouble with the Pfizer except for the first day. I like a lot of sleepiness. I felt very sleepy. But the next day I didn't feel like

Scott Benner 54:28
I haven't asked you the whole time. But I've been wondering what are the animals? I'm hearing? It's a dog right?

Emilio 54:34
Yeah, it's my dog. sorry. She's

Scott Benner 54:38
sorry. I just I've been dying to know like, at first I heard I heard birds in the beginning. Yeah, I also have birds. What kind?

Emilio 54:46
It's a Australian parrots.

Scott Benner 54:49
Really? Yeah. Collect a kid Amelia.

Emilio 54:54
Yeah, I had a lot of animals here also have clownfish and a reef tank and I used to get planted tank.

Scott Benner 55:00
That's nice. I used to keep saltwater fish when I was younger. It's just amazing. I love it. Yeah, this is very expensive. So eventually stop doing it. Do you actually do? Are you able to get fish from the ocean when you scuba dive?

Emilio 55:15
And technically yes, but legally, no,

Scott Benner 55:19
Amelia, you're telling me that you're not legally allowed to take fish from the ocean and put it in your face? Oh,

Emilio 55:23
yeah, here's your you know, you're not you're not allowed to do that. And in Santa in certain parts of of the coast. I say. Okay, because we have like reserves,

Scott Benner 55:32
and you would never do that. No, I will never course. Okay. Of course. Of course. We're very, very law abiding. Is there anything that we haven't spoken about that you wanted to? I want to make sure we don't miss anything is we're coming up on an hour.

Emilio 55:48
And I think we have talked about all the things you mentioned.

Scott Benner 55:52
Well, I have a question then what made you want to come on the podcast?

Emilio 55:57
I want to I want people to know that. A living here in Ecuador. It's not like living in the jungle. Because people in the US thing, that thing that we live near, we don't live in. We live in a city and we have a lot of things here. And also that having diabetes is in South America. It's not that bad. You can control it. You can live with it.

Scott Benner 56:18
Yeah. Do you have any trouble with the heat with keeping your insulin? Okay, and your pump?

Emilio 56:23
No, I usually don't. Don't put it in the freezer because I spend time in my room or spend time driving. And I pass in in air conditioner all

Scott Benner 56:34
the time. Okay. Oh, yeah. So your home's air conditioned?

Emilio 56:37
Yeah. My all my house everything because here the heat is the worst. Hey, they have failed these like 35 degrees. 38 degrees?

Scott Benner 56:45
Well, a second. I'm gonna figure out what that is in Fahrenheit.

Oh, okay, like 95. And I'm imagining the humidity like the the

Emilio 56:57
100%. Yeah, it's very high all the time. You can

Scott Benner 57:00
go swimming without going to the ocean maybe. So, is it a very indoor kind of existence then? Or do people know?

Emilio 57:09
We go out but usually, like, if I go out with friends, we go out to houses. All right. We didn't go to malls because of the of the whole biasing also. But yeah, and usually we go to the beach and spend time there or we go to the islands like,

Scott Benner 57:30
Yeah, okay. When you're living in a place with violence like that, like how do you protect yourself? Like, are there things you think you can

Emilio 57:39
add to that? You can love guns here are prohibited. Also, the cops are very like, a their own. They can't shoot people. If they do that they go to jail. So they don't do anything, basically.

Scott Benner 57:56
So is the is the violence mostly with knives?

Emilio 58:00
No guns. Oh, so

Scott Benner 58:02
people have guns, but you're not legally allowed to have a gun? Yeah, exactly. I understand. Okay. Much gang violence, or is it?

Emilio 58:10
Yeah, it's like, like are like a cartel thing. I say that. Yeah. It all goes up to Mexico and down. It's like the whole South America drug thing.

Scott Benner 58:22
I say, do your parents do you think your parents will leave when you leave? Or do you think they'll say,

Emilio 58:27
no, they're gonna stay here stay there. They don't have like, an idea of going to live somewhere else.

Scott Benner 58:33
I see. How about your brother and sister.

Emilio 58:37
My sister dream about living in Germany, but because of a situation. She's like, trying to figure out how how did she lives but yeah, my brother and my brother have has lived in Canada because of the of the college. And, but I don't think he has plans to go and live somewhere else. Okay.

Scott Benner 59:02
I think so. He's back in Ecuador now after? I say, Well, it's a big, big change Canada, Ecuador. I mean, just the weather alone.

Emilio 59:12
Yeah, he if it was for him, he will leave the the the thing with college is that he had like, like, I don't remember the exact word.

Scott Benner 59:24
Visa like a student visa. Yeah, like

Emilio 59:27
student visa from here. And part of the agreement is that he if he goes five years again, Allah He needs to work in its work here for 10 years,

Scott Benner 59:38
I think. So if you get to go away to college, you have to come back and take what you learned and and use it in Ecuador.

Emilio 59:43
Yeah, if you'd have worked, the government gives you work and all that stuff.

Scott Benner 59:48
So you'll be like, I'm gonna ask you a question that you might find silly but I want to understand are there any scary snakes or spiders or anything weird there that could kill me?

Emilio 59:58
A yes or no? depends on where you're going. For example if you're going to allow Amazonia obviously to the jungle obviously you're going to find like deadly things. But a couple of Sir Angela has nothing to worry about

Scott Benner 1:00:13
nothing to worry about. Okay, right. Never woken up with a snake in your house or

Emilio 1:00:18
something like that. No, no, I live in a city and

Scott Benner 1:00:21
there's no nothing there. Yeah, and you're very close to the to the shoreline as well. Yeah, hour and a half drive. Do you drive? Do you have a car?

Emilio 1:00:33
Yeah, well, not It's not mine, but it's from my dad when I use it.

Scott Benner 1:00:37
Okay. Do you take any special precautions when you're driving about your diabetes? You check more often?

Emilio 1:00:43
Yeah, usually I Korea juice box or Coca Cola? Coke.

So yeah,

I have I have had times when I'm driving and I I went to 50. And I did sub and during during the Cogan wait. Yeah.

Scott Benner 1:01:00
Do your friends like know how to help you? Have you ever had that comment?

Emilio 1:01:04
Yeah, I have. I have the conversation with them a lot of times because I have tell them if someday I fainted. You need to check my blood sugar this way and this way and this way.

Scott Benner 1:01:13
And they can do it. Oh, that's amazing. Good for you. Yeah, they are trying that array worlds. Right. So you found you found a good group of friends even though you you found them late? Yeah, that's encouraging. That really is great.

Emilio 1:01:26
Yeah, it's very nice to have them. No.

Scott Benner 1:01:29
Oh, Emilio. I I'm really happy that you came on and did this. Um, I? I learned a lot in the last hour. I appreciate you. Thanks. Yeah, no, it really um, I'm serious. It's a I've never heard of anyone who had an autoimmune hepatitis before. When you said that, you know, I just thought, wow, that's that. Some I've done this like 600 times. And somebody said something new to me today. Which shocked? Oh, that's amazing. Yeah, no, really, I'm I was really thrilled that you came on and share that. And just hearing how you took care of your family during COVID. And all that you had to go through as a child and that you're you're doing so well. It's really encouraging. And uplifting. Oh, thanks. Yeah. Do you not think of yourself that way? Or do you?

Emilio 1:02:18
Yeah, I just think of myself that way.

Yeah, but I usually like thinking a lot.

Scott Benner 1:02:23
Yeah, don't think it's too much because you'll end up sound like a jerk if you start saying nice stuff about yourself. But yeah, exactly. You're basically Superman to me today. I'm just Oh, saying it's amazing. I mean, like seriously, like, congratulations on, on on just being that kind of tough and sticking it out and not given up. Really is special.

Emilio 1:02:45
Yeah. That's part of the life. I think. That's part of life.

Scott Benner 1:02:49
Yeah, no, no, trust me. That's that's the whole thing. But a lot of people give up and you had enough reasons you could have, you know, it's really, really a really wonderful story. Tell your parents I think they raised a really good kid. Oh, thanks. I'm gonna tell them you tell them a guy from America on a podcast that that they'll be like shut up.

Emilio 1:03:13
They usually they usually they want people to tell them that.

Scott Benner 1:03:18
Yeah, I would imagine. I mean, I can't be the first person to think it. That's for sure. It's a really extraordinary what you've what you've

Emilio 1:03:24
Yeah, my last boss from my last job. It's like a cafeteria and next next to the house. I have to tell them that had told them that also. Like my uncle's when they get to know me Barrow, like you? They do tell them that?

Scott Benner 1:03:39
Yeah. No. You sound like a really special person. I'm glad to have met you. Thanks. Yeah. If there's nothing else, I'm gonna say goodbye. But I really do appreciate this.

Emilio 1:03:51
Yeah, I think we have speak about all the subjects we needed to speak on.

Scott Benner 1:03:54
We did good, right. We didn't miss anything. And I had a good time. Did you have fun? Yeah, a lot of them. Did you really? Okay. I'm glad to are you like, going to let your friends listen to this or no?

Emilio 1:04:05
Yes, I'm gonna send it to it. Excellent. That's really cool. Well,

Scott Benner 1:04:09
hello to everybody there. I hope one day to get to Galapagos Islands. I don't know if I ever will. The murdering stuff you said made me a little scared. But that's okay.

Emilio 1:04:18
Yeah, we were trying to figure out how to fix it.

Scott Benner 1:04:22
Yeah. You stopped shooting people and I'll come see this the turtles Oh my gosh. Alright, Amelia, hold

Emilio 1:04:29
on. This situation. The situation is in wackier. But in the Galapagos Islands, not not nothing else.

This stuff happens.

Scott Benner 1:04:36
I'll be away there. Yeah, yeah. Yeah. Well, yeah. It's back on my dream list then. I I really mean it. I have all the places that I

Emilio 1:04:46
you should you should come. It's it's a very special place is very

Scott Benner 1:04:49
nice. Yeah. All right. Okay, well, you've, you've made me feel good about it.

Let's see who were thanking Dexcom on the pod, Emilio. Oh, and guess what else? You for listening. Thank you so much to Dexcom for sponsoring this episode of The Juicebox Podcast. Don't forget, look into that free 10 day trial@dexcom.com forward slash juice box. You also may be eligible for a free 30 day trial the Omni pod dash, and the only way to find out is it on the pod.com forward slash juice box. Take the T one D exchange survey takes fewer than 10 minutes you help someone with type one diabetes, and you support the podcast T one D exchange.org. Forward slash juicebox. If you're looking for the private Facebook group, it's called Juicebox Podcast type one diabetes, answer you answer, you'll have to answer just a few questions to get in so that the you know the algorithm knows you're a real person. There are almost 25,000 members in that Facebook group. It's really a wonderful place full of helpful, lovely and dedicated people, you should check it out. Enjoying the podcast, why not leave a five star review. Wherever you're listening, five stars Check, check, check, check, check however many five is and then write like a beautiful review that people could read and go Oh, I see why this person likes the podcast. I will try it too. That's very helpful. But the most helpful thing you can do is share the show with someone else and subscribe in an app. So I don't want to say the most helpful thing. The two most helpful things you could do for the podcast is to share it with someone else. And to subscribe or follow in the app you're listening in. And if you're not listening in an app, it's possible you're over gonna say 65 and you're listening online like this web browsers amazing. You can hear words from it. If that's if that's what you're into. Don't let me stop you. It's okay. But otherwise, you guys should really check out a podcast that they're free and easy and make it a nice experience when you're listening. Don't forget to subscribe and follow, follow and subscribe. That's it for me. I'll be back very soon with another episode of The Juicebox Podcast.


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#673 Robin Arzon

Scott Benner

Robin Arzon has type 1 diabetes.

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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 673 of the Juicebox Podcast

you have been asking for ever for me to get Robin ORS on on the podcast. And today he or she is Robin is here to talk about a lot. I asked her a ton of questions of my own questions from you the listeners, and she's gonna tell us a little bit about what she's doing with today's sponsor. Jeeva. Glucagon, if after she's done talking, you're super interested. Head to G voc glucagon.com. Forward slash Robin orizon. US dollars on I'll just spell for you Robins with an eye. So it's our OB i NARZON. Robin Arsan G voc glucagon.com forward slash Robin Arsan. Anyway, huge thanks to G vote for helping me get Robin on the show. I hope you enjoy it. While you're listening. 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. At some point during the show, you're going to hear me talk about an article that I wrote about Robin many years ago. If you're interested in it. I'm going to post it in the private Facebook group later. You can find it there Juicebox Podcast type one diabetes on Facebook. This show is sponsored today by the glucagon that my daughter carries. G voc hypo Penn Find out more at G voc glucagon.com. Forward slash juicebox. If you're a US citizen who has type one diabetes, or is the caregiver of someone with type one, you can spend fewer than 10 minutes filling out a survey at T one D exchange.org. Forward slash juice box. This survey will ask you incredibly simple questions about your life with diabetes. It is completely HIPAA compliant 100% Anonymous, and we'll help people living with type one. It also supports the Juicebox Podcast when you complete the survey, T one D exchange.org. Forward slash juicebox. So I'm going to jump right in because I know our time is limited. And usually there'd be some light chitchat where we get comfortable. But we'll skip over that. No problem. I'm gonna go with my first question. I know you know, because everybody who's involved in getting you on the show today told you but prior to that, do you remember me? You shouldn't but do you?

Robin Arzon 2:38
I'll be honest, I don't I don't recall our initial conversation. But my team did update me that we had spoken before.

Scott Benner 2:46
But of course would understand that you didn't. But I just it was crazy. Prior to the podcast, even starting at the very beginning of 2015. I got a note from an associate. And they said would you would you interview this person? For me? I think it was for the pod or something back then. And and there were like I said, Sure. What's the balance? It always uses on the pod and she's gonna be a lawyer, but she's like a marathon runner now or something like that. And I was like, Yeah, sure. So. So we have this long conversation, and we're talking about everything. And in the middle of it, you just, you know, started picking through your life a little bit. And you told that, you know, story, which I'm sure you've had to tell a million times since then, about when you were in college. And, and the the problem you had in that bar, and I was just like, oh my gosh, this is incredible. And then you and I only ever spoke once more. And we were talking and you said it was you were saying thank you and whatnot. And then you were like, Hey, I gotta go. I think I'm getting a book deal. And then that was it. And then I've watched your life, like explode over the years. And I feel like I know you win. Obviously I do not. So

Robin Arzon 3:58
that's amazing. Wow. So you you really have witnessed quite a few moments.

Scott Benner 4:03
I just, I just feel like I've been I feel like a proud parent. And no one knows I'm part of the part of the family. That's I guess what I want to really dig in and start by asking you like from that moment, like back there and like since like 2015 Right, early 2015 How did you go from a girl who thought she was going to be a lawyer and decided to run marathons, etc. To where you are now like what path way did you take? It couldn't have been?

Robin Arzon 4:32
Oh, gosh. Lots of pathways, I guess. You know, there's no there's no one bright path. Success is often very circuitous and windy. And I think I really aligned myself with what feels like a yes, you know, I really own my note to protect my yeses and, you know, really develop partnerships that feel in alignment With how I live my life, whether that's with peloton or with evoke, so that g vocal 10. So that really, I guess is the answer to your question. I don't know if you were looking for something more specific, but I oftentimes really go on intuition.

Scott Benner 5:15
No, I appreciate I appreciate that as a as a great answer. So you just sort of do what seems right to you, and ignore the things that seem wrong. And that's how much yeah, I mean, that that had to be I mean, for people who don't know, like, going all the way back to that point, like, you were like, you were a student, you were focused on being an attorney. And then just one day, we're like, No, instead, I'm going to do this. And were you interviewing people at one point in the very beginning?

Robin Arzon 5:44
Interviewing like, something like that? Oh, well, what initially, when I left my law firm, when I stopped practicing law, I, at that time, had a blog. And so I was interviewing athletes and Olympians many of whom are now my friends for that for that blog. So yeah, I loosely, I would say call it an interview, but it certainly wasn't, you know, any Pulitzer Prize winning journalist.

Scott Benner 6:09
It's just fantastic. I mean, the I remember, it's clear as day talking to you back then, that the leap from I mean, you were just about graduated from your undergrad, right? Or you had graduated?

Robin Arzon 6:19
No, I would have graduated. Yeah, I, I practice law for eight years.

Scott Benner 6:24
Yeah. It's just It's, I mean, I'm saying this is it's insane to have accomplished something like that. And then just said, Oh, I'm gonna sit this over here on the shelf and try something completely different. That begins with a blog and interviewing people talking into your iPhone or whatever. It's just Yeah, right. Do you look back and ever think, wow, that person was like, how do you see yourself in hindsight? Do you see yourself as brave or, like, as you're older, and you're a mom, now? Do you think, God if my kid does that I'm gonna be so sad?

Robin Arzon 6:54
No, I don't think I would be upset. I sure, there are lots of moments of bravery. But I think, you know, I, in what I do every day, I like to normalize the everyday superhero. You know, I joke that I have a superhero toolkit. And, you know, part of that involves trusting oneself and being brave. And I know, you know, part of what we're going to talk about today is my partnership with Jeeva, hypo Penn, and that's in my superhero toolkit now, right. And as an athlete, and as someone living with type one, I want to feel prepared, I want to feel ready. And I want to, I want to optimize opera opportunities for bravery. So yes, I do think there were lots of moments, you know, where I had an opportunity for bravery when I was leaving law, certainly as an athlete living with type one. And now it's both with passion and preparedness that I that I navigate the next. The next adventure is, whatever whatever they may be.

Scott Benner 8:03
It's interesting that you bring it up, because I have questions here from listeners of the show. And it's mostly about that they they're, they're just hungry to know how you can do such an intense exercise with type one, they want to know all kinds of stuff, which I'll ask you about in a second. But the one thing I want to tell you is that of a really robust Facebook group, like 25,000 people in it, and so I went in there, and I just sort of said this, there's just this morning, like, Hey, I'm going to talk to Robin today. Do you have questions and hundreds of questions flowing, but along with them? Were pictures of children riding bikes, you know, dressed in leotards and notes from their parents and notes from their parents. Please tell Robin how much she means to our family. Like I'm not kidding you dozens of them. I mean, if I read if I read you every one of the little stories that people sent me, that's what we would do for the next 45 minutes. And so, I guess, let's start with that. Let's start with their kind of nuts and bolts questions because people want to know, like, what your regimen is like before you ride people with type one experience, you know, loads while they're exercising or sometimes highs from adrenaline weightlifting of course impacts differently they want to know everything they want to know what you eat before you get on the bike. How come they don't see you looking at your blood sugar during that ride because they can't make it through without looking and and all that stuff. So what's your prep like for for a ride?

Robin Arzon 9:35
It really depends on what my training schedule has been that day. Before I teach at peloton I normally have done my own lifting, running or cycling depending on what what the classes that I'm teaching. So for example, today, I ran in the morning and I didn't just drink water beforehand. And then towards the end of my run, my blood sugar started dipping a little bit, so I have half my smoothie. Then I went to the gym, I did an hour of weightlifting, and some metabolic conditioning. Again, just water throughout towards the end of the metabolic conditioning, my blood sugar was dipping a little bit. So I finished the rest of my smoothie that I went to the studio I taught to cycling, one cycling class and one arms class. And it's whether I eat like half a banana or a little bit of juice, or usually I'll plan my meals around my training. So for example, this morning, when I drink my smoothie, I didn't take any insulin from my smoothie, I just literally use that sugar during my training. And I timed when I was going to be drinking that smoothies based on what my blood sugar was doing. And then my blood sugar was pretty even heading into my cycling class. And then after my cycling class, I had a banana because I saw that my blood sugar was dipping throughout the classes. I mean, I know my body, I know how to listen to my body, I can vary with pretty good accuracy tell within a range or at the very least whether I'm low, average normal, quote unquote normal, or are trending high, I really am very that in tune with my body. So yeah, for 3530 or 45 minute class, I really don't feel the need to look at my well my data

Scott Benner 11:26
people I don't know if this is a reference, you're gonna know. But you're you're you're closer to my age than not. So maybe you will people watch you like they're studying. There's a brooder films that I have. I have notes here about I don't see her look at her watch. People have theories that you have your blood sugar in front of you behind a camera where you can look up and see it but they can't see it. It's fascinating to the to think about how they're wondering because I think you're accomplishing something that they they haven't been able to accomplish yet, which is take this ride without needing sugar adoring it or being worried about your blood sugar. And they're just trying to imagine how you're doing it's really great of you to share this. So do you see something different? When your strength training? Do you need insulin for that?

Robin Arzon 12:13
Yeah, so I so for strength training, I almost always will have my normal insulin on board. And if I see myself going low, then I'll just plan again, like I have a smoothie that I drink every single morning and I just literally drink it when if and when I'm starting to trend a little bit lower. Sometimes depending on like I'm going really heavy like this morning, I did a pretty heavy five by five that adrenaline is going. And so I'm pretty I was pretty actually even throughout up until the very end because because of that adrenaline, right? And when I'm doing more cardio based things, then you know that my, my, the chances of me going lower or higher. My chance of me going lower are more likely. But yeah, for things that that really pump up adrenaline. I'm mindful of that. And when I'm doing sometimes on Sundays, I'll do like two hour lifting sessions. And during that second hour, I almost always need to give myself a little bit of extra insulin to accommodate for the adrenaline.

Scott Benner 13:17
Can I ask you? I don't know if you share this stuff with people. But are you you're wearing a pump and a glucose monitor? I imagine. Yeah. And I looped them. Oh, you're looping? Oh, very cool. My daughter lives. Okay, so you're I'm gonna guess you're using Omnipod and Dexcom? I am Yes. Cool. So. So does the loop do a lot of the work? Do you find the algorithm? Is it helping? Like when you look back at it later? Are you seeing it giving insulin or cutting away? Or are your settings kind of rock solid? Where it just sort of rides the way you have it set up?

Robin Arzon 13:51
It definitely helps. Yeah, I would say that the algorithm is advantageous for sure. And my settings are pretty dialed in. And I really adapt my settings based on what I'm going to be doing. You know, so I know how my body is going to react. And you know, for for example, for long runs when I was marathon training. I was really, really grateful to find something like GMO paper pen because then I would just throw that into my into my running Bell and I wouldn't have to think about it in the off chance. Thankfully, I've never had I've never needed to use any type of glucagon injection. But that's the kind of like peace of mind that I like knowing and the worst worst case scenario and I'm in a severe extreme emergency situation that I would be covered. But for the most part, you know, my settings are very dialed in and I am incredibly body aware. And I bet on myself. I don't you know what I made like I every I don't need to check every two seconds because I trust myself and I'm willing, you know, I'm willing to take a certain certain element of

Scott Benner 14:58
risk. Yeah. So Robin, you're going No, I'm gonna tell you something right now, like you're being a really good sport by trying to talk about how you're doing all this stuff, because I know from having my daughter set really well to and her settings are rock solid, that when people ask you like, how do you do that? I say, it's not really there's not a lot to say because the settings are so right on that even as you move from activity to inactivity or strenuous activity to cardio or whatever, that your settings are so close that it, you don't see the impact that they imagined. And that's why I go back to them. And I say, you know, you got to get your Basal right, first, you have to understand how to Pre-Bolus meals and the glycemic load an index of the food you're eating, like, to me that's, that's the key. It's not the like, it's not the magic, hey, 25 minutes before you go for a run, eat 15 carbs of like, I don't know, those are workarounds to a problem that could be fixed other ways is how I kind of say it.

Robin Arzon 15:55
And, yeah, I mean, I really, I really think it's important to observe, I when I was diagnosed, I thought to myself, Okay, you're gonna just have to treat yourself like a science experiment, like take in as much data as you're comfortable. And then repeat what works and change what doesn't. And I have plenty of days where I'm just like, oh, gosh, why isn't this going my way. But for the most part, I'm able to operate largely unencumbered. Because I really approached my care. Like, I had to get curious. I had to get curious, instead of getting frustrated, get curious.

Scott Benner 16:32
See, the way I think about it, as you have to have these experiences over and over again. And when they do go wrong, which they inevitably will, instead of, kind of like being upset by it treated as a learning experience. Look at what happened. So you can make adjustments for the next time. I think we're saying the same thing. Really? That's really cool. Yeah, that's excellent. Hey, I'm going to jump around a little bit these questions a little bit. Here's a less serious one. This is a quote, how do I walk away from a spin class without my crotch and but feeling like it's been pummeled by a sledgehammer and set on fire? Do you have anything about that?

Robin Arzon 17:05
That's funny. You do get used to it? I would say check your bike settings, because you should not feel like you've been set on fire. But yeah, I would say you know, definitely check your your bike settings to make sure that you're seated on the bike appropriately, but otherwise, you do get used to it after a few cracks.

Scott Benner 17:23
When you have I don't know if you share this, but you appear to have as little body fat as humanly possible. Do you feel like your pod and index calm? Does it feel different people want to know when you don't have as much body fat when you're inserting them? Or how would you be

Robin Arzon 17:42
I have made Yeah, I have inserted it them in areas where I actually feel it. The other day, I inserted it accidentally, like in my oblique and that did not feel so great. So I removed that part a little bit early. But I tried to choose areas that have a little bit more cushion.

Scott Benner 18:01
Or you aware of that photo of you know, Chris Freeman, he was an Olympic cross country skier has type one. There's a and he's got to know him personally. But yeah, who I mean, yeah, there's this very popular photo of him where he's wearing his on the pod like up on his PEC. And I always, like when I saw that photo, I thought, well, I can find a place on my daughter if he can wear it there. You know, like, so. It's just a lot of pinching that goes on when you put it on, but I always use that. Yeah, I

Robin Arzon 18:26
always I always pinch up for sure. Yeah, after

Scott Benner 18:29
right. People are wondering if you have any advice for young athletes who have type one and it's been recently diagnosed about making the transition from there the life before they had to worry about their blood sugar's to it.

Robin Arzon 18:43
I mean, races diagnosis is tough, right? Because you're just figuring out what works right like there's no part of the difficulty and the challenge of type one is that it is unpredictable like you know that's what's so cool about the G vocal pen to be ready campaign is that it's like that's the message is be ready.

Scott Benner 19:08
G voc hypo pen has no visible needle, and it's the first premixed auto injector have glucagon for very low blood sugar and adults and kids with diabetes ages two and above. If you'd like to learn more about Chivo Capo pen, all you have to do is go to G voc glucagon.com forward slash juicebox. G voc shouldn't be used in patients with insulinoma or pheochromocytoma. Visit G voc glucagon.com/risk.

And don't forget if you'd like to vote to know that you heard Robin on this podcast visit G voc glucagon.com. Forward slash Robin Arsan. Now let's get back to Robin she was saying something about B Ready.

Robin Arzon 20:03
I love that message because it's encouraging someone to really advocate for themselves. And you know, we we are warriors, we are diabetes warriors. But it doesn't mean that we can't advocate for ourselves, and then prepare for what? How we define our finish line or what that finish line looks like. So I would say, for young athletes, advocate for yourself, you know, if you want to continue playing that sport, you absolutely can and should. Now, you're just going to have insulin and maybe a Devo type of pen in your toolkit. But, you know, that initial journey, you know, it's challenging, and then as you bring it, you bring in different elements, then that is, you kind of have to recalibrate, you know, what, what the facts and what the care are. But I think, focus on what you can do rather than what you can't do. And I do understand, especially as it relates to children, you know, caregivers are really just trying to keep kids healthy and safe. But we should be doing so in a way that encourages them to lead really dynamic and robust lives. And they can absolutely continue to do that safely.

Scott Benner 21:11
I like what you just said there about, focus on what you can do, because you can build off of that. So maybe, maybe you're not, you know, maybe you can't go do the run you used to exactly do right away, but do the things you can do learn from that. And then adapt, adapt, adapt as you go along. That's a really great idea. All right. Yeah. You know, I keep thinking when you're talking about to evoke that. The hypo pen is the first. It's the first glucagon that my daughter's actually carried with her because of the form factor. Oh, good. Prior to that, we we would stash them at the house or at school, but they were never on her person. And now she has them constantly with her in six months from now she's leaving for college for the first time. And it is a real, there's a real sense of calm for me knowing that it's something that's on her person all the time. Yeah, I agree. Yeah. Tell me about the be ready campaign. I know you're involved in it. And what's it same?

Robin Arzon 22:04
Well, I, you know, as I mentioned, it's the idea that we're empowering folks living with type one to give themselves peace of mind when I think be ready, I'm taking keys, cell phone, water, rescue carbs, you know, like glucose tabs in the event of a low blood sugar. And then for severe low blood sugar, incidences, you've got the GMO carboplatin which hopefully, you don't need, right, but you know, you throw it in your backpack, I throw it in my running pack, I have it in my training, I take a bag, you know, when I go to lift heavy weights, and I have that in my in my training bag. So that's the idea behind it is that, you know, this is something that you are going to use an only in an extreme circumstance or perhaps a loved one we would use for you. If you are, you know, in a really unpredictable, severe low blood sugar event.

Scott Benner 22:54
Hey, again, I feel weird for knowing things about you that other people told me, but are you plant based with your eating style?

Robin Arzon 23:03
I am yeah, I have I've been plant based for almost nine years.

Scott Benner 23:07
Okay, so Well, how long have you had type 1000?

Robin Arzon 23:11
And less? I was I was vegan before I was type? 1013. I want to say

Scott Benner 23:22
maybe yeah, I love that. You don't? I don't know exactly when my daughter was. Yeah, I

Robin Arzon 23:25
don't know. I mean, you know, it's interesting, because like I had such such a lot like my primary ways of identifying in the world don't happen to relate to me, you know, living with insulin and living with these bionic products. You know, my identity is a lot of things. So I don't think you know, I don't think about it that much. You know, and, and folks, I do have followers who are like, Oh, why don't you talk about this? Why don't you talk about that. And it's not that I'm clearly we're talking about it today. It's not that I'm unwilling, it's just there's so many other things that I think about in my day to day that really empower me to live boldly.

Scott Benner 24:09
Yeah, you know, it's funny people were asking if you saw a difference between how you had to use insulin plant based but in prior so you you obviously don't know but do you think generally speaking do you use I mean, what's the impact on I mean, there's still a lot of protein and in what you're eating Do you see protein spikes like people do when they eat a cheeseburger and then see a arise 90 minutes later from the protein? Do you see that with what you're eating? No,

Robin Arzon 24:36
not not at all. I very rarely, it's only when I eat processed foods. Of course, we all know like the pizzas and things like that, that I that I and I would use non non dairy cheese. But I eat a lot of the same stuff day in day out. So you know they how food is going to affect my body is at this point law. Originally large, largely predictable, and being plant based, and they enabled maintenance, obviously, that's a very personal choice, and enables me to feel faster from my workout. And really feel like I have control over where my food is coming from and what that looks like,

Scott Benner 25:18
How often would you say do you have? Well, first of all, what's the range you shoot for? When you're not working out? Where are you? Where are you hoping for your blood sugar to be?

Robin Arzon 25:29
I try to keep it between 90 and 100.

Scott Benner 25:31
Cool. Okay. And then. So for my daughter, we use like 70 and 120 are her Dexcom alerts. So my my question was, is how often do you have to do something to push your blood sugar back up to 90? Is it? What kind of frequency or does that happen with?

Robin Arzon 25:50
Um, meaning, like, what I needed to treat a low or

Scott Benner 25:55
something like not dangerously low? Yeah, pretty rarely. Okay, do you see? Yeah, I

Robin Arzon 26:02
would say it's pretty rare.

Scott Benner 26:03
Do you see highs more frequently than lows are not even enough to speak of?

Robin Arzon 26:09
I'm not enough to speak up. I mean, I will certainly say like, if I'm traveling, if I'm out to eat, you know, timezone changes, something like that. So anytime you change variables like that, things can get a little funky. But I would say it's really only like, if I'm, you know, out to eat, and I'm just like, okay, screw it. I'm gonna have this, this and this. And in two hours, I'm probably going to need to treat a trending high, you know?

Scott Benner 26:35
What's the, what's the, what's the average meal Bolus for you? Like, units? Wise? Is it I know, we're not? I know, everybody's different. But I'm just trying to get a feeling for the plant based thing. Is it? Because I'm getting I mean, you're you've got to be. I don't know how tall you are. But you look like you're built out of a muscle. So you know, I'm assuming that being in good shape is, is part of how the insulin works. And you write because it gets through your body? Well, I'm assuming you're really well hydrated all the time. You know, so you're getting good insulin circulation. If you don't want to answer it's fine. But I'm just wondering, like, what what would you consider like a big Bolus when you're having those like, restaurant meals?

Robin Arzon 27:12
Oh, big. Probably over four or five units. Okay.

Scott Benner 27:21
Gotcha. All right. I have more questions. Again, I'm sorry to know about your life. It's creepy. But you've had a baby in the recently congratulations. I know it's a little long to stay. Still. But people are wondering if you have any breastfeeding tips for with type one or pregnancy tips for type one.

Robin Arzon 27:45
Looping helps a lot. Certainly, I would say. Breastfeeding. Yeah, at the beginning of breastfeeding, that was tricky. There were I had many more lows in the beginning. You know, pretty much after you have the baby. Of course, in the third trimester, as the placenta is growing, your insulin needs really skyrocket. And I think mine like double, maybe even triple by the end. But as soon as you have the baby that that really tamp down, then if you're breastfeeding, your body is basically a furnace like you are like I really likened it to you're kind of always in that low level of cardio, least in the beginning as your milk supply as is developing. So those first six weeks, I was very, you know, I trended low, much more frequently. So if I were to, you know, Monday morning quarterback approached, I would have reduced my basil pretty significantly. And then, you know, Bolus kept an eye on my blood sugar and Bolus more frequently, just until I got a handle on what you know what my new Basal rate should were, should have been, you know, during that breastfeeding, initial breastfeeding, part of the journey. Yeah,

Scott Benner 28:56
I've interviewed a number we actually have series. I want to track a woman through her pregnancy interviewed her at every trimester while she had type one. And we've had some experts on to talk about it. And some of them say that the Basal needs and your bolusing needs in the third trimester, almost stop as soon as the placenta is delivered. And you almost have to like, swap back again. So now in hindsight, you think maybe right after the delivery, your needs lowered, but you kind of stayed with the settings you were at? Is that how it went? Or do you think your body burning?

Robin Arzon 29:26
I definitely lowered it regardless, because I knew, you know, I did some research and I was aware about that after, you know, the placenta is no longer a factor. But I would say, you know, middle of the night lows were much very frequent in the in those first few weeks, and it would be sometimes like, you know, I'm up to keep the baby and I'm going low. So I tried to just, you know, you know, plan for plan for the unpredictable both the baby and breastfeeding and loads. And then finally, you know, kind of I reached, what's my blood supply kind of came in? That roller coaster alleviated a little bit. But yeah, those first few weeks were challenging.

Scott Benner 30:13
Did you address it mostly with food or with insulin adjustments? Or a little bit of both?

Robin Arzon 30:19
I think it's yeah, it was definitely a little bit about initially, it was predominantly food, I would just be like, Okay, it's to the morning, I'm just going to eat half this, whatever, banana or drink some juice, but then I wanted, you know, I wanted to get my settings right. To the extent that I could, I could, and I ultimately did. And then, you know, for the remainder of my breastfeeding journey, it was normal, like, normal robbing

Scott Benner 30:44
cool. Again, I'm gonna ask a question. It's not my question. It's someone else's. And if it's too personal, please don't answer it. People are wondering if you're thinking about having your daughter tested for TrialNet like to see if she has any type one markers. Have you ever considered that or even thought about it?

Robin Arzon 31:01
My husband and I have had discussed it, but we're not going to discuss that publicly, of course.

Scott Benner 31:05
Okay. What was the other question I had about that? Oh, in your family line, after being diagnosed with type one, because you were diagnosed as an adult? So first of all, was that shocking? Are there other autoimmune 's in your family that, that it made it seem reasonable when it happens? Like do you have any relatives with type one or? Celiac? No? Anything really?

Robin Arzon 31:28
No, nothing like that. So that was definitely surprising.

Scott Benner 31:31
Yeah. What was that, like? As an adult trying to adjust to it? What do you think it would have? I mean, when you talk to kids who go through it, do you see similarities? Or do you think it's it's very much different?

Robin Arzon 31:44
I don't know. You know, I only know my own experience. I cannot I really, I can't say and I don't speak to a ton of kids. About this specifically.

Scott Benner 31:55
Well, if you want to speak to a ton of them ever, I have a list of them over here who are dressed up like you riding peloton bikes. So I actually have this here. This, this woman tells me that when she returned home from the hospital, with her 12 year old son, there was no t one D in their family. They were basically she said she was having a breakdown because her son was diagnosed she got on her peloton bike to try to alleviate her stress. She randomly picked a 20 minute ride, and for the first time realized that you had diabetes. And I guess you raise your arm and she saw a sensor or something like that. And she said it's snapped her into reality, she realized she could handle this for her kid. And they've just been been going full bore after that. And I'm telling you, that's one of like a dozen stories like that, that people sent me. Really crazy what

Robin Arzon 32:44
I'm grateful that I was able to inspire her.

Scott Benner 32:47
So I have to tell you, like what you said earlier about diabetes, not being a very big part of your life, you know, moment to moment, because you are incredibly busy. You you you run the world, it seems like to me. I don't know all that you do. But it seems like a lot. And and I get that. And even if you were to talk to my daughter who's just about 18, she would talk about it like you do, it's not at the forefront of her mind. It's not it's not you know, it doesn't stick to her constantly all day long. But then, on the flip of that, is that just you having it and being yourself is such a you know, it's such an empowering thing for other people. Can you tell me what that feels like? Like, what does it feel like to not set out to be a role model for something but yet you end up being one? I like how you laugh?

Robin Arzon 33:40
Uh, yeah, I don't I don't know, I don't, I didn't certainly don't see myself as a role model. But I am someone who lives with a lot of aspects of my persona and my public my life as a public figure. And that's part of it. And I own it. And I not only preach what I practice, but I practice what I preach. So it I am living a life that is in alignment with my value system. And that's the only way I can answer it is you don't really choose sometimes you don't choose how the world perceives you. And, you know, I guess that's just an example of it. Yeah.

Scott Benner 34:22
So Robin, no, this has got nothing to do with me. But I receive probably about 15 letters, like these notes that people sent to you. I received them about the podcast every day. And they're, they're difficult to process like I listened to the uncomfortable nature of your answer just now. And I thought if you were to ask me that question, I would have sounded just like you. I just started out to make a podcast and I thought I would share the way we do things and it might help people and I didn't I never imagined what would happen. And then when people kind of mirror back their experience to you and they say hey, you did this or I was able to accomplish this because of something you said. I always just go Thank you. I'm so glad the podcast is valuable for you. I don't even know what to say it feels it's otherworldly, really. It's not it's not something I don't think I don't think a normal person prepares for that to happen to themselves. So I appreciate you and I think I know you feel so most people I guess know you right? Do you think through through your work with peloton and being an instructor there and that business but what else do you have going on you've written go you're going to write more books.

When you have diabetes and use insulin, low blood sugar can happen when you don't expect it. GE voc hypo pan is a ready to use glucagon option that can treat very low blood sugar in adults and kids with diabetes ages two and above. Find out more go to G voc glucagon.com forward slash juicebox G voc shouldn't be used in patients with via kromus atoma or insulinoma visit G voc glucagon.com/risk. Once again, robins link for G voc glucagon is Chivo glucagon.com forward slash Robin Arsan now we'll get back to the show.

Robin Arzon 36:21
Yeah, I've written a few books. I had two New York Times bestsellers. The first one shut up and run and the second is my first children's book strong mama. I just submitted the manuscript for my third book, I have some cool partnerships happening, you know, in the fashion and beauty space. That that's pretty exciting coming out this year, I have some things you know, as it relates to being a mom, and you know, stuff for a fina as well some products coming out from for children. And, you know, of course, you know, my partnerships with companies like GE voc hyperopia, and, you know, natural corollary to how I live my life, right. So whether it's diet, you know, being able to continue to be bold, that someone living with diabetes, you know, because I have the GMO cocoa pen in my in my back pocket essentially, or whether it's, you know, continuing to put out more amazing content with peloton globally. You know, those the synergies are really important to me. And I, I partner and invest only with come in companies that I really use and aligned with with my day to day. So for example, I'm an investor and athletic greens, ag one that is a company that I really believe in. So any of the any of the partnerships that I speak about publicly as an investor and a brand ambassador, are things that I really use.

Scott Benner 37:50
Now, that's amazing. The athletic greens, that's a drink, right? That brings nutrients, vitamins, that sort of stuff.

Robin Arzon 37:58
Yeah, exactly. So I'll throw that in my water in the morning.

Scott Benner 38:01
What what's in your smoothie, you mentioned your smoothie, like it's a friend, I don't know if you realize that, when you speak about it, like it's a person in your life. So what's in that smoothie,

Robin Arzon 38:11
the smoothie is about, you know, One serving is about 20 carbs, and the carbs would change. You know, it might be mango one day, it might be berries, but you know, I'll I'll do the carb count, based on all know what the carb count is and kind of use that as a work back approach. Vegan Protein, I'll put magnesium in there, I'll put the Ag one in there. Gosh, what else is in there? Some vitamin D, some, sometimes some chia seeds, sometimes some hemp hearts, you know, it really depends on what we have in the cabinet. But it might be as many as like 10 to 15 ingredients, depending on depending on the day. And then greens will always throw in kale, spinach, whatever we have in the fridge,

Scott Benner 38:58
you make yourself at home every day. Oh, wow. This you're you're married? Correct? Yeah. Do you and your husband keep a similar kind of diet? Or do you eat two different ways?

Robin Arzon 39:12
No, we pretty much the same together every day.

Scott Benner 39:17
Would it be difficult? Do you think if one did something one way and one did something the other way? Or just more work? Maybe?

Robin Arzon 39:24
Um, I mean, it probably would make it. Certainly we would have more dishes. It's a lot easier to eat as a family. I will say that.

Scott Benner 39:34
What does I don't even know if you think about it this way. But do you think of do you think of the way you eat as a style? Is it something that you you don't you don't mean? Like do you do you have cheat moments or is it not? Or do you just there's part of me that thinks that you are just a person who sets a course on things and does them and doesn't deviate from them but I'm trying to find out if that's the case or not?

Robin Arzon 39:58
Yeah, I don't really have My philosophy of life, this is a cheating day or meal. You know, I don't, I don't live a life that I feel like I need to have a vacation from like, I don't only live for Saturdays, you know, my life is friggin awesome. Similarly, I feel in a way that makes me feel really good. And I love the foods that I eat. So I don't feel the need to kind of sneak away and have a a cheat. If I feel like having something, you know, if I want to eat birthday cake and eat birthday cake, if I want to have dessert, I'm gonna eat dessert, you know, I don't feel the need to kind of reward myself or punish myself using food.

Scott Benner 40:40
Okay, no, I mean, it makes a lot of sense. And so do you even? Are you aware of your your caloric intake during the day or anything like that? Are you just sort of like you just don't know, basically, you eat what you eat? Sounds like pretty repetitiously at the very least. So you probably know what you're taking in day to day.

Robin Arzon 40:57
Roughly, yeah. I would say I eat pretty intuitively. But I have a general sense of macros, macros and micronutrients, nutrients. Yeah. Okay.

Scott Benner 41:10
Is that something you were able to figure out on your own? Or did you need? Did you go to someone to help you understand the, the nutrients that your body specifically needed? Because it occurs to me. I mean, just to as a sidebar for a second, you know, we talked to a lot of different people on the podcast, and we have this one series called how we eat and people just come on and tell the tell the different things that they, you know, some people are keto, and some people are plant based, etc. And they come on, and they talk about it. But what I find talking to people, is that the happiest ones are the ones that seem to have found the eating style that fits their body. And and then if you don't, I mean, it's just, it's what works for them. They're happy, and they're healthy. And they're unencumbered. And that ends up being the right answer. So I don't know, I forgot my question. But I'm assuming that's, that's what I got my question again, I found it did you have to go to somebody to have somebody tell you, Hey, these are the macros that you need? Or how would a person go about figuring something like that out?

Robin Arzon 42:13
Well, nutritionists are certainly very helpful in that, you know, get getting an understanding of your lifestyle, how active you are. And that is a very important, I would say stop on the journey for somebody who is really just trying to educate themselves and do that kind of exploratory regex conversation. I've done a lot of I mean, I've really educated myself about what works for me, and again, to your point is, find what works for you. There isn't a one size fits all. And I definitely recommend, you know, seeking out a professional to help you calculate if macros are of interest is certainly not required for for all folks. But it's, it can be helpful data. And again, we should only be using these data points as ways to help us not, you know, to have more numbers, and more things to kind of inform you know, what, how we're doing and how we're doing what we're doing,

Scott Benner 43:18
right. However, a couple of minutes left, I want to ask you, so I'm gonna use myself as an example. I'm 50 years old, I make a podcast about 12 hours a day. And in the my free time I walked to the bathroom, the shower, and at my bed, I am not getting enough exercise. So at Christmas time, I was like, Okay, well, what seems low impact for me that I could get started with, and I got a bike. I rode the bike for three weeks before my knees started hurting. And now next month, I'm having my meniscus repaired. How do people know Don't worry, it'll be fine. But, but, um, but how do people who are who want to do something? Like what path is there to success, right? Because I made the decision and I made the move and I started doing it. Okay, I had a I had a, you know, a physical limitation, and I'm going to fix it, and I'm gonna get right back to it. But I mean, how do people How should people start? Because I mean, I watched a video of you riding that bike, I'm 100% certain I would have a stroke or a heart attack if I did that. So but I do believe I could get to it. But what is that? Like? How do I get to it? Is my question like, you know what I'm saying? Like how do people go from inactivity to activity with with the best chance for success?

Robin Arzon 44:35
Yeah, I would say small, consistent voices. You know, the sweeping change usually isn't the long term strategy. I would rather have someone do consistent, less intense movement or initially and for a longer period of time, and then you later on, you know, intense stuff like there is absolutely a place for intensity and working really hard and pushing heavier weights and running further distances and biking, you know, but I wouldn't recommend that, as someone who's new to movement start there, I would rather see what you can do consistently for one month, three months, six months, and then use that, you know, as as a building block. Yeah,

Scott Benner 45:25
I want to be clear, I don't think the bicycle like hurt my knee, I think my knee was already kind of there and just, you know, doing anything kind of pushed it over the edge. So just so lower, low, kind of lower, more consistent, maybe longer, less impactful until you start feeling that you can handle more and then more intense, more intense, more intense as you move forward. If you put real effort into that. Yeah. If you put real effort into that, is it fair to think that in a year, you could see a change in your life, I just want to let you know that the next part of our conversation is related to exercise, listeners should consult their physician before beginning or changing any exercise or physical activity program.

Robin Arzon 46:11
Oh, my gosh, you could see a change much sooner. And it also depends on the goal, right. So you know, if you're trying to build up cardiovascular endurance or approaches for that, if you're trying to build up, you know, build up more muscle and make your muscles larger and hypertrophy training, there's a there's a method for that, right? So you really have to begin with the end goal in mind of like, what is your objective and the more specific you can get with your objective, then you can specifically inform how you should be moving how frequently how intensely, you know that all of those are variables that really are informed by what the goal is, and, and where someone is starting from. But you but I would say someone really needs to start where they are. People's entire lives can change in a year. So yes, I would say change certainly can happen. And, and that length of time.

Scott Benner 47:02
Alright, so I feel like I have a minute left. So I have to ask you about, like your average day, like when you get to the end of Is there ever an end to your day? Do you? Do you have like a time where you say I'm not going to work anymore? Does work kind of exist throughout the day?

Robin Arzon 47:16
Yeah, I mean, I would say I don't usually take meetings, you know, after, by the time, it's my daughter's dinner time, I'm pretty much off in terms of any public facing commitment. I untether, myself from social media and emails, probably at around eight o'clock, and then I start to wind down, I have a meditation practice, I have a read, you know, I read every single evening before going to bed. And that, you know, I tried to create a transition time to anchor my day. You know, so I can start to let go, because my work is who I am also as a public figure. So I have to be very intentional with moments that are, are not that.

Scott Benner 48:01
I feel that that my job doesn't really exist in an office or a place. And that there are times when, like, sometimes my my wife will be like, What are you doing? And I'm like, I'm making money. And you know, but it's 10 o'clock at night. I'm like, I shouldn't be doing this right now. You know what I mean? So, hey, you just mentioned meditation? Do you practice anything specific, you transcendental? Or do you something else, there's just sort of a mindfulness that you that you approach,

Robin Arzon 48:25
if it is similar to TM, it's a Vedic practice that I've been doing, actually, since I was a lawyer, so quite a few years,

Scott Benner 48:34
when you're next to other people? Do you think? Do they do you think they look at you and go, that person has way more energy than I do? Or do you feel like you're not I'm saying, like, you have a ton of good energy, I guess, is what I should say. And you're obviously putting it to work in a lot of different places. But you're doing I mean, just the stuff I can see from you publicly, which is clearly not your entire life. I'm tired watching you. So why are you getting tired?

Robin Arzon 49:04
You know, I, I do prioritize sleep. I, I often take it back to basics, you know, like when I'm feeling like my energy is waning, and I might been lately be a higher energy person than most folks. But, you know, I asked myself very simple questions like, have you are you hydrated? Did you eat a vegetable today? You know, can you get to bed a little earlier, because we put the phone down for 10 minutes, you know, that we kind of know intuitively what we're supposed to do. But when we're, you know, filled with cortisol, and, you know, we feel like things are getting a little bit stressful or lot stressful. We kind of let those things fall. But really, we do have a framework that we can rely on and we should be relying on those things. Especially when and when, you know, times are tough. Yeah.

Scott Benner 49:54
I appreciate you sharing all this with me. I really do. I'm sorry. We had a little technical difficulty at the beginning kind of took away some of our time. I'm but I've just been really excited to do this. I've come at us 16 different ways and have not been able to get through to you. And when when we were able to make this happen, I was really excited people. I'm going to tell you Robin, the people that I know in the industry, when I when I said I was interviewing you, they were like, how did you get Robin to come on your podcast? So you are known as here we are. You are known as a tough get just so you know. There are people who were incredibly impressed that you and I were talking today. I hope you had a great time. I really enjoyed speaking with you. Thank you so much for doing this.

Robin Arzon 50:37
Oh yeah. Thanks for having me. Great to talk to you, Scott.

Scott Benner 50:39
It's my pleasure. Take care.

A huge thank you to one of today's sponsors, G voc glucagon, find out more about Chivo Capo pen at G voc glucagon.com. Ford slash juicebox. you spell that GVOKEGLUC AG o n.com. Ford slash juicebox. Also want to thank Robin for coming on the Juicebox Podcast and spending this time chatting with us is very cool. If you're new to the podcast, hang on for a second. And I'll tell you a little more about it.

First of all, run through some links G vote glucagon.com forward slash Robin arzani. Hit that link. Let you vote no, you heard Robin here on the podcast. And if you're a US resident, who is the caregiver of a type one, or has type one themselves, please again, consider going to T one D exchange.org Ford slash juicebox. And taking that quick survey. Now if you're new to the podcast, and you just came by to hear Robin, you should stay and hang out. There are over 600 More episodes for you to enjoy. You can check them out in a number of different ways in the audio app of your choice, meaning Spotify, Apple podcasts, what else? I think Google's got a podcast that there's there's a ton of podcast apps or other audio apps where you just search for Juicebox Podcast, type one diabetes, hit subscribe or follow. And you're on your way. If you're having trouble finding a podcast app, go to juicebox podcast.com. And there are links right across the top of the page that will get you started. The podcast has a vibrant private Facebook group. It's absolutely free, has 25,000 people in it and is waiting for you you can look around and see what people are talking about. We'll jump right in Juicebox Podcast type one diabetes on Facebook. The show has different series defining diabetes, which goes over all of the terms that you might run into in your life using insulin. There's the diabetes Pro Tip series with me and CDE Jenny Smith, where we talk about all different kinds of ways of managing type one, you might enjoy the diabetes variable series that talks about things that impact your life with type one, such as alcohol, or shopping at Walmart, or other things that make your blood sugar go up and down. The after dark series covers things like eating disorders, complications, bipolar disorder, drug use, and so much more adult topics for people living with type one. There's this series all about algorithm pumping. Are you looking into on the pod five control like you, Medtronic sucks 70 G, and you'd love to hear conversations about those. We have that too, right here on the Juicebox Podcast. And don't forget the how we eat series where a new person comes on to discuss their eating style intermittent fasting, keto flexitarian Bernstein FODMAP doesn't matter if it's a style of eating. We've talked about it here on the podcast. One more time, jump into a podcast app or an audio app start today. If you don't know where to start, go to that Facebook group Juicebox Podcast type one diabetes, and right up top. In the featured tab. There's lists and lists and lists of episodes that you might be interested in. Thank you so much for listening today. I'll be back very soon with another episode of The Juicebox Podcast.


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