What Diabetes Can Teach Us

TOPICS DISCUSSED

• Neil Greathouse on the Cost of Insulin

• Stacey Simms on Parenting a Diabetic Child

• Felix Holland on Diabetes Camp

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EPISODE RESOURCES

• Neil Greathouse Instagram (@thebetes)

• Stacey Simms Website

• The World’s Worst Diabetes Mom by Stacey Simms

• Moms’ Night Out is a new event for moms of children with diabetes. It’s an overnight with education, inspiration, community, connection, and cocktails! Visit Diabetes Connections for all the info and registration.

TRANSCRIPT

Sarah [00:00:07] This is Sarah Stewart Holland.  

Beth [00:00:08] And this Beth Silvers.  

Sarah [00:00:10] Thank you for joining us for Pantsuit Politics. Hello and welcome to Pantsuit Politics, where we take a different approach to the news. Today is my birthday. Happy birthday to me! And we have a very special episode for you today. As most of you know, my youngest son, Felix, was diagnosed with type one diabetes last year. And I have learned so much during this past year about myself and about parenting and about politics and about our health care system all through the lens of diabetes. So I wanted to invite some of my favorite people in the diabetic community on to talk about that. First up, you are going to hear from diabetes educator Neil Greathouse, known as @thebetes on social media. Next, you're going to hear from Stacy Simms, author of The World's Worst Diabetes Mom. She is, in fact, not the world's worst diabetes mom. We'll get to that. And also the host of the podcast Diabetes Connection. And then you're going to hear from my son Felix, who spoke with me about his time at diabetes camp. Now, this is not just an episode for people with diabetes. In fact, the entire inspiration for this episode is how much diabetes can illuminate, even if you have no idea what a CGM or an A1C or PDM even is. So I hope that you will join us for the conversation afterwards and that you enjoy this episode. It is one very close to my heart. Neil Greathouse, welcome to Pantsuit Politics.  

Neil Greathouse [00:01:59] Probably one of the greatest days of my life this year.  

Sarah [00:02:00] Oh, stop. Well, I was going introduce you.  

Neil Greathouse [00:02:02] I'm not even joking.  

Sarah [00:02:04] This is silly. Why don't you just introduce yourself? You're here. You can do this yourself.  

Neil Greathouse [00:02:07] I'm here. I'm an adult. I can do this. My name is Neil. I'm a director. I'm a filmmaker. I also am a diabetes educator. And I have had type one diabetes for 31 years. I make some educational videos every single day on social media.  

Sarah [00:02:22] Under the account @thebetes. That's how I found you. My husband loves your account.  

Neil Greathouse [00:02:25] The Betes. Yes. No collaboration crossover with Beats by Dre. It's a missed opportunity. It's a swing and miss, and I realize that now.  

Sarah [00:02:34] I invited you on Pantsuit Politics on this very special diabetes-themed episode, because this is often the case that I have found as a parent of a type one diabetic. Diabetes is just a window to so much insight. Often I'll be talking about just something spiritual and I'll be like, "You know what? Diabetes is an excellent metaphor for this." Let me tell you about basal insulin and bolus, and how we have to maintain our foundations before we can take on big challenges. And you did a series really about the cost of insulin that I want to talk about, but it was excellent insight into the health care industry overall. It just was a great window into how these industries function. So tell us how you started making this series and what you learned in this particular social media series about the price of insulin.  

Neil Greathouse [00:03:26] I spent about three and a half months just researching before I posted any of it, because so many people think that the insulin pricing problem is all connected to the manufacturers. And at some point I just wanted to go, okay, is that true? Because if it is, I'm going to make some phone calls or maybe I can drive over there and talk to somebody.  

Sarah [00:03:50] Aim myself to something.  

Neil Greathouse [00:03:51] Yeah. For real. Like, they don't need any more of that. And that's when I started realizing after talking to about the fifth or sixth advocate that has gone to Washington, after watching a lot of these congressional hearings, these Senate subcommittees, you realize, okay, this thing is so much more convoluted and corrupt than I thought it was. And that's what this unfolded into. So it turned into about 23 pages of notes. But after all of that was done, I realized I cannot expect anybody to sit here and listen to all this. I broke it down into 60 second, 90 second. Here's what the pharmacies are doing. Here's what the manufacturers are doing, Here's what the PBMs are doing. And that is where it really started to get clear, is that this is such a winding road but everybody is dipping into that pot.  

Sarah [00:04:42] So PBM is pharmacy benefit manager, right?  

Neil Greathouse [00:04:45] Pharmacy benefit managers.  

Sarah [00:04:47] Did you know anything about those before you started this process?  

Neil Greathouse [00:04:50] No. I had heard of PBM but didn't know what that meant and didn't know what they did. Had no idea. I thought you go get a prescription for insulin and it comes from the manufacturer. And it doesn't. It has to go through a PBM. It has to go through a wholesaler. It has to go through a holding facility at some point. And pharmacies are taking their cut. The insurance companies are taking their cut. And then PBMs are after the manufacturers. So they sit in between the insurance companies and the manufacturers. You go, "Why do you need all of that?" Well, if you want to get your insulin or your prescription of any kind to be on a formulary, which means it's available through your health care provider, then you have to go through a PBM. They are the gatekeepers. And so what you do is you, you have to pay them off. Yeah. If you don't take care of them, if they don't get a kickback, if they don't get a cut or a percentage of that, they will take your drug off of their formulary, meaning you can't go there and get it and you're of the game. So that's the key. You have to be on the formulary.  

Sarah [00:06:02] I remember reading a piece probably, gosh, I think it's just before Covid, about monopolies. In this piece, they were explaining PBMs. You did a better job. I fully comprehend it now, just maybe it was the white board. I don't know the visuals. And remember thinking, "Oh, you've got to be kidding me." And I think you're talking about them right now as if they're separate from the pharmacy in the insurance company. But I learned through your video that they are not there. So why is that relevant to-- oh, I don't know, monopolies?  

Neil Greathouse [00:06:32] This is interesting because it's an oligopoly. These three main insulin manufacturers, they account for 96% of the world's insulin, which that kind of blows your mind. You're like for real? In order to go to the pharmacy, you think, right, I've got to go through these PBMs. The PBMs own or are owned by the health care providers and they also own the pharmacies. So CVS is the PBM. They are the pharmacy and they also are owned by a health care provider.  

Sarah [00:07:05] Well, Anthem. Because when you said that on your piece, I was like, "Oh, no wonder everything has gone so smoothly for us. We have Anthem Insurance and we go to CVS.  

Neil Greathouse [00:07:13] Yeah, because it's all connected. And if you do that, you're like, okay, this is great. But there are so many kickbacks, there are so many add-ons. Well, we will give you this coupon for this. Or will give you this discount for this. Who's getting any of that money? It's all going back to the same company. So they're all owned by the exact same company and they're not regulated. They are behind a black curtain. The United States government does not know and they cannot do investigations on the exchange of money. And the contract deals are going on. It is not regulated. There are lobbyists that spend $20 billion a year to make sure that it stays this way inside of our health care system and inside of our government.  

Sarah [00:07:55] You see the manufacturers raising the price of insulin, but you also hear them saying we're making less money. Both of those are true because that money is going to the PBM.  

Neil Greathouse [00:08:04] Yeah. They're raising the price, making less money because the PBM takes their cut. This will prove to you that the PBMs are the problem in all of this. The manufacturers make money if they sold the same vial of insulin for $35. And here's why. Because you could go to Mexico and Canada and buy the exact same drug that right now cost me If I go to Kroger or Walmart, right now costs $380 for one vial. If I go to Canada or Mexico right now, it's $35 and the manufacturer is still profiting at that price. So everything else in between there is a markup. It's insane.  

Sarah [00:08:45] That was my first question when you said they manufacture like 96% of the world insulin. So what does this look like in Britain or Canada?  

Neil Greathouse [00:08:53] They also don't have the same health care coverage that we do, obviously. So the health care system is not in sight. So it's like you go to Australia and they get this medicine nearly for free. Same thing with some insulin pumps. Now it takes them longer to get insulin pumps, continuous glucose monitors and things like that through a through a durable medical equipment. It takes them longer to get it available. But once it is, it is nearly free for the public.  

Sarah [00:09:21] Well, and that's what I thought when you said that because you get to a later part in the series, where you talk about Medicaid Part D. Which it's not equivalent, but it's important because when you're talking about Canada or the UK or Australia, there's one main buyer. It's the government. And our government is a buyer and it's a huge buyer, and so changes to that matter. So is there any movement within that or-- I know you watch a lot of congressional hearings-- to get this PBM situation under control?  

Neil Greathouse [00:09:50] Not necessarily. When they said and they made this law as of last year, that the United States government can now negotiate on behalf of Medicaid. They never had that purchasing power before. And now that they do, the average is four years.  

Sarah [00:10:08] Well, they did. They just didn't want to exercise it legally.  

Neil Greathouse [00:10:10] There it is. Yeah, they always had the ability to do that and now they're exercising that. And so it usually takes four years before the general public see those discounts. So if they're the largest purchasing agent that is out there, their ability to negotiate with those manufacturers is going to drive that price down. It has to.  

Sarah [00:10:30] Right. Well, then we saw those changes and then you see the manufacturers coming and dropping the prices. Now, you made the series before they dropped.  

Neil Greathouse [00:10:36] Oh, it was right in the middle of it. So they dropped it as I finished the next to last video. I was like, are you watching this? I know they're not. They're definitely not.  

Sarah [00:10:46] They might be. You don't know.  

Neil Greathouse [00:10:47] What's interesting is a lot of people-- I don't know if you saw it when Twitter when they can make all those new accounts. I don't if you saw it, but Eli Lilly had somebody make a fake account. They posted that insulin now is free. And it looked like a verified Twitter account. And the Internet did what the Internet does, and it went off. And I absolutely loved it. So, yes, there is now all of a sudden pressure. But here's what's happened, is all these main three manufacturers have said, "Hey, we now have insulin that we're going to cap at $35 co-pay." So they're still going to make their money. That's only a co-pay. That's not what someone's actually paying for. But what they're actually doing is they're offering that on a generic version of their drug, not a bio-similar. So they're not giving you the insulin that you could use in an insulin pump because your insulin pump won't take a generic insulin. Because it's in the sixties; it's 60% effective of what the original is. So they're making this generic version available. It's all optics. They're saying, well, now, hey, we're going to do it. We're going to take one for the team. We're going to give it to you guys at this discount. Are you really, though? No. They're doing it on a generic that they don't have to have the patent on there while holding on to the patents that they have over here. And then what's even crazy is to continue to further the patent on the actual insulin that they have. They've changed the delivery method, which is why insulin pens have come out. So it's not a vial in a syringe now. They get another 20 to 40 years on that patent just by changing it to be available in an insulin pen. Drug hasn't changed at all.  

Sarah [00:12:25] Well, that was another part that I thought was so interesting and wildly relevant outside the diabetes community is the practice of evergreening, which is sort of what you're describing. Tell us what that means.  

Neil Greathouse [00:12:37] So this is the last process where manufacturers try and keep their old patents. And what they do is they extend the lifespan of those patents by basically producing or changing or modifying it by such a small percentage. It's not really changing it at all. It's not done to improve health. It's not done to improve the drug. It's done to to make sure that the patent they hold on their drug is good for 20, 40, 60 years to keep that monopoly pricing period going. Demand is fixed. Supply is unlimited. They can make as much of this as they want. But the average cost to make a vial of insulin right now in 2023 is around $7. It's a 3006% markups on insulin. It's the third most expensive liquid on planet Earth right now. It's just crazy.  

Sarah [00:13:28] Crazy. And I think it just speaks to the industry practices. And in the industry priorities, you talk about a nonprofit company that's entered the field, and I think that gets to it. I mean, their job isn't to improve health, their job isn't to expand research or innovation. They're legally obligated to turn a profit for their shareholders. That is their job.  

Neil Greathouse [00:13:50] Yeah, that's it. And they're doing it.  

Sarah [00:13:52] So are you encouraged by the entrance of these companies or like California coming on and saying, we're going to produce insulin?  

Neil Greathouse [00:13:57] I'm encouraged because it will be available to someone. So the amount of people that use an insulin pump is minimal compared to people that take injections, that take a generic insulin. So for the majority of people, especially underserved, underprivileged areas, this is huge. So what I have to do is I have to look at and go, "Okay, a win for someone else I still have to count it as a win for all of us, even if it doesn't affect me directly." So that's my view of it. Is it good? It's good for everybody, but it doesn't help people, the small percentage that are on an insulin pump that are wearing a CGM. And I think, okay, I feel fairly privileged to have the technology that I have anyways right now. Yes, California is doing something amazing. Mark Cuban is doing something absolutely amazing by creating competition. That's really what they're doing. Do we need more insulin? No, it's in a warehouse right now from all the big three. We don't need more insulin. We do need more competition and more pressure, which I believe is a good thing. I think.  

Sarah [00:15:03] I think that's true, again, of the entire pharmaceutical industry like that. I think diabetes is often that insight that I was talking about or that way to see things more clearly because it's a huge problem, but it's also a stable problem. Like we understand who has it. There's that statistic, like 95% of people who have diabetes don't know if they have it. I think that's mainly type two. But I think that just the stability of our understanding, like, we've had insulin for over 100 years. Yeah, there's new innovations and there's new pumps. But I just think that there's a certain, like I said, stability around diabetes and the community and the drugs and the understanding that allow you to see these bigger systems functioning around it more clearly.  

Neil Greathouse [00:15:47] Yes, I agree. Absolutely. That's that's why some of these companies that are definitely still making a profit, making insulin is one thing. To have Civica Rx, a nonprofit company, start making their own insulin, you just know the clock is ticking on some of these larger corporations. It's just a matter of time. But the real cash cow is not insulin, not for these manufacturers, it's in type two diabetes medicines.  

Sarah [00:16:17] I believe that.  

Neil Greathouse [00:16:18] It is in the Ozempics, the Wegovys, the Mounjaros that hits more of an audience. People that don't have diabetes that just need to lose weight. It is an added benefit of it. So really what is happening is the markups and the increases on insulin were really just a way to pay for the research to make type two diabetes medicines, which will be their main source of income over the years.  

Sarah [00:16:42] Well, right now they're trying to turn it into a pill. I just read that today. The headlines right now are like trying to make the Ozempics pill form instead of shots.  

Neil Greathouse [00:16:51]  I'm not against it.  

Sarah [00:16:52] We're in it together. Less suffering. And I think that all the stuff about Ozempic and how it quiets people sort of internal chatter around food or how it reduces other addictions, they find themselves like online shopping less, like, whoa!  

Neil Greathouse [00:17:09] Yes, wild. What is going on?  

Sarah [00:17:10] I wonder how you feel about what I tell people now is diabetes type one (and I would assume type two) is such an insight into not just the pharmaceutical industry, but our food industry. My husband and I were talking about the other day, we were talking about the calories in a large Blizzard. Do you know how many calories are in a large Blizzard?  

Neil Greathouse [00:17:32] I can't even imagine. It has to have at least four numbers, maybe five.  

Sarah [00:17:37]  I think it's over 2000, 1800 or something like that. It's over the daily allowance. And I said that should be illegal. Like, it really should. You should not be able to serve someone that.  

Neil Greathouse [00:17:48] Yeah, that's a lot.  

Sarah [00:17:48] That's poison. I've told people. I'm like, "If you could see what your blood sugar does on a soda, you'd never drink one again." We take our pancreases for granted.  

Neil Greathouse [00:18:00] Those things are hustling-- those pancreases. Yeah, they are. 

Sarah [00:18:03] They're hustling. And you see with type two diabetes and how common it is, how we're wearing them out. And it's not our individual failings. It is a system that I just think we know what the product does in our bodies. We know what it does to our blood sugar. We know what exposure like elevated blood sugars over time does. And it's everywhere.  

Neil Greathouse [00:18:30] Yeah. I have two friends of mine. One of them, he has no affiliation with diabetes. He is a Crossfitter. He eats extremely clean, extremely healthy. Works out more than any of us should. And another guy, his daughter has type one. And they're both wearing a CGM right now. One of them for performance, one of them to see what his daughter goes through. And the ups and downs that they have is so shocking to me. They're like, "Neil, I thought that this was going to be more of a flat line." I'm like, "No. Everything you eat affects you." Yours just doesn't go as high as mine does. I've got no way to bring it down on my own. You have these spikes and these valleys, but the things that we are eating are absolutely affecting us. Stress doesn't have as much of an effect as what we eat. The exercise, the other things that we do, they can all help. But at the end of the day, the one thing that we can really control is what we eat. But the problem is the products, the amount, the quantities that we are being given, it's a lot.  

Sarah [00:19:30] Well, and I tell people-- not to brag, if you don't even know what A1C is it won't be exciting to you. But I have a 4.9 A1C. I'm very proud of my A1C.  

Neil Greathouse [00:19:38] Good for you. That's amazing.  

Sarah [00:19:39] For a 41 years old. And I tell people, I'm like, "You know why? Because I just don't drink sugar." I love sugar. I chew it. I don't drink it. If we can just get away from that, I think we would hear our pancreas sigh in relief across the country.  

Neil Greathouse [00:19:54] They're stressed out.  

Sarah [00:19:56] If we just stop drinking it.  

Neil Greathouse [00:19:57] Yeah. Our pancreas is producing so much more than just insulin. It produces six other hormones, one that tells our stomach when it's full and when to empty. That pancreas is tired. It's doing too much.  

Sarah [00:20:14] Well, which makes sense that the weight loss drugs. If you're insulin resistant, then you're also not getting the message that you're full and for your stomach to empty  

Neil Greathouse [00:20:22] It's all connected. Right.  

Sarah [00:20:23] Yeah. Well, and I just think I've learned so much about people think it's just sugar. The first thing is, well, can you have sugar-free? No. Because it's not about sugar, it's about carbs. And sugar-free stuff often has a lot of carbs on it.  

Neil Greathouse [00:20:38] It really does.  

Sarah [00:20:38] And then the other thing I think that was one of the most powerful things I learned was it's not just carbs, it's a fat and protein rise. So if we eat something that's high in fat and protein, like a pizza, for example, then we get a rise like 2 hours later. And when a diabetes educator finally explained to me like, well, look, that's a huge stress on your body. Those triglycerides and that inflammation from the high fat and the high protein eat into your basal, which is your sort of foundation of insulin. And so, the bolus you gave for the food goes to make up for the basil and then there's not enough bolus to last out the meal. And I was like, oh, my God. So every time I'm eating like this, I'm stressing my body out. It takes so much more insulin, not because of the carbs, not because the sugars. Yes, because of them, but also because the fat and protein together is just so hard on my body. And I was like in my forties and I'm a pretty good healthy eater and I've never heard it that way.  

Neil Greathouse [00:21:37] So pizza is-- for anybody living with type one, it is the most difficult thing to gauge right. Most people never get it. If you see somebody post about it on social media, it's because they did it well and it's like capturing a unicorn.  

Sarah [00:21:51] It is.  

Neil Greathouse [00:21:51] What in the world? It's the fat, the carbs, the proteins, and they all digest at different rates. It's a lot, man. It's a perfect storm.  

Sarah [00:22:01] And it's so brutal because it's such an easy food to eat.  

Neil Greathouse [00:22:04] I know.  

Sarah [00:22:04] Like just order a pizza. That's what we did for our family. And now it's just diabetes has sucked all the joy out of pizza for us. 

Neil Greathouse [00:22:13] Food isn't fun anymore.  

Sarah [00:22:14] It's okay. It's like why I always think about Michael Pollan, who said you should eat that stuff if you make it yourself, because you won't make it yourself because it's a pain in the butt.  

Neil Greathouse [00:22:23] Right. it's too much.  

Sarah [00:22:23] You wouldn't eat donuts that much because you got to fry them and that's a pain.  

Neil Greathouse [00:22:26] It's so convenient for us.  

Sarah [00:22:28] Yeah. If you were to make fries from scratch, you'd never eat em. Are you kidding me?  

Neil Greathouse [00:22:33] You can have fries as much as you want as long as you make those.  

Sarah [00:22:35] Make them yourself.  

Neil Greathouse [00:22:36] So you're saying never. Never is when I'm going to have them.  

Sarah [00:22:38] Yeah. If you have to make the pizza and the dough and the sauce and that, you'll never do it. Forget it.  

Neil Greathouse [00:22:43] And we don't have to. Now, this is also so even what you said. Internationally, people don't deal with some of this stuff over in the UK. The food quality in different countries is different. Now, I'm not saying that ours is the best or the worst, but you've got a very Western American diet that we have and it's not the same everywhere else.  

Sarah [00:23:02] Oh, yeah. I mean, when we went abroad last summer, we were in Italy, Switzerland, and France. We were on multiple daily injections, which is hard to get really good control on, especially with a kid because you're talking about teeny tiny amounts. And we still had great numbers because we were moving all the time and the food was not full of high fat and sugar.  

Neil Greathouse [00:23:21] Crazy.  

Sarah [00:23:22] We were eating snails. Listen, escargots is very [inaudible].  

Neil Greathouse [00:23:27] It's a lot of protein.  

Sarah [00:23:28] As is beef tartare, which are both things my eight year old ate.  

Neil Greathouse [00:23:32] No way..  

Sarah [00:23:33] Yeah, he ordered it more than once. He loved beef tartare which I was like, perfect. Great. Eat all the beef tartare you want. 

Neil Greathouse [00:23:38] Go for it. We can do the math on that.  

Sarah [00:23:39] We can do this. Well, what was the most surprising things you learned doing the series, and what do you wish everybody understood.  

Neil Greathouse [00:23:47] Who most people when they rant about insulin prices blame the manufacturers. And that is the most telling thing. Is that if I'm looking at it, for me it's about 70% PBMs. The rest of it, the other 30% is the manufacturers. That's the kind of way that I weigh it out. I used to be furious. Honestly, I joke around, like, I want to drive over there and take care of things. It's not that easy. It's too insulated and it's too massive. And then it's not super encouraging, but a lot of the things in our federal government are not set up for success in this. It just isn't going to happen quickly. It is going to take years.  

Sarah [00:24:35] You got some real industry capture when it comes to this industry.  

Neil Greathouse [00:24:39] Oh, my gosh. Yes. 2019 is when the Senate subcommittee hearings happened. We're at 2023, and we just saw at the beginning of this year is when Medicaid is now allowed to go out and negotiate. That's so long. But there's just so much money involved there.  

Sarah [00:24:58] Is there any movement to regulate PBMs?  

Neil Greathouse [00:25:00] No, none.  

Sarah [00:25:02] Maybe that's where we should start. Maybe we should all write our congressional representatives instead.  

Neil Greathouse [00:25:05] So I don't know if this is going to shock you or not. I wrote every single one of my state representatives. Everyone. Not even in my district, not in my area, I wrote all of them. Do you know how many contacted me back?  

Sarah [00:25:18] How many? Zero.  

Neil Greathouse [00:25:20] I got one. I'm not in his district.  

Sarah [00:25:22] Wow.  

Neil Greathouse [00:25:23] So I don't know. It was a lot. 

Sarah [00:25:26]  If there are some bills that you think look promising, you got to tell us here at Pantsuit Politics and we'll all write our representatives. 

Neil Greathouse [00:25:33] Yeah, there are definitely some. And JDF does a really good job. ADA does a really good job of advocating at the federal level. They have Congress. They have times when a lot of people living with type one, elementary age, high school age, college age, and adults go in there and they advocate on behalf of. I think those are very important to keep it in front of people. There are plenty of advocacy groups that are out there right now trying to take this head on. It's a lot. It really is.  

Sarah [00:26:02] Well, an essential part of advocacy is education. So thank you for all the work you do on The Betes, it's really appreciated here at Pantsuit Politics.  

Neil Greathouse [00:26:08] I loved every second of it. Thanks.  

Sarah [00:26:10] And thanks for coming on our show.  

Neil Greathouse [00:26:12] This is, like I said, a dream come true. This is amazing. Thank you.  

Sarah [00:26:16] Thank you.  

[00:26:29] Stacey Simms, welcome to Pantsuit Politics.  

Stacey Simms [00:26:31] Sarah, it is amazing to be here. Thank you so much for having me.  

Sarah [00:26:35] Tell the people a little bit about yourself.  

Stacey Simms [00:26:37] So my son was diagnosed with type one diabetes back in 2006 when he was 23 months old, which is a circus unto itself, a toddler with type one. But he's 18, super independent. You tell these kids they could do anything. And the unfortunate part is they believe you and then they will leave home and do all this stuff.  

Sarah [00:26:55] So true.  

Stacey Simms [00:26:56] He's doing great. But I'm the host of Diabetes Connections, which is a long running podcast for people who use insulin, people with type one and other types of diabetes who use insulin. And I am also the host of Mom's Night Out Events and the author of The World's Worst Diabetes Mom book.  

Sarah [00:27:11] Great title. Now, just so we know, the people here are thinking, "Wow, she has an amazing voice for podcasting. This was a really interesting alignment of events in her life." What did you do before your son was diagnosed with diabetes?  

Stacey Simms [00:27:26] Yeah, I was a TV reporter and a radio show host for a long time. But when your kids hit middle school, that getting up at 3 a.m. things is really, really rough. So we made a big switch. And I have a daughter as well who is a couple of years older than my son. And, boy, it's been great. So, yeah, thanks. Voice for podcasting.  

Sarah [00:27:44] Yes, it really does. It's such a beautiful voice. I've never been a TV news reporter, but I feel confident this is a better gig.  

Stacey Simms [00:27:49] You know what? You need less lipstick. I don't work my hair. I love that part.  

Sarah [00:27:53] I love it. Now, I invited you on because as people just heard with my conversation with Neil Greathouse, I think diabetes is such an interesting insight into like the way the community functions, the way the disease functions, how you kind of handle the disease, just even what is happening in your body is such an interesting insight, a metaphor for so many other things in American life. And I was so interested to talk to you because when we talk about being in the diabetes community, especially like parenting type one kids. All these things we say about like bipartisanship and civic dialog are true, which is it helps to have a common goal. It has to have something that unites you that you're working toward. Obviously true if you're talking about parents of type one diabetic children for sure. And also, what I say all the time on Pantsuit Politics is the thing that unites us is we all want better for our kids, right? No matter how far apart your politics are, we should all want better for our kids. And yet, even before I reached out to you, I felt pretty confident saying that is not enough. And I bet politics bubbles up inside this community in really interesting ways despite all these factors.  

Stacey Simms [00:29:12] Without a doubt. When we were talking offline about this issue, it really made me think diabetes unites a very large group of diverse people. I'm sure since your son was diagnosed, you've crossed paths with people who perhaps you would never have met. It does not discriminate in terms of income level or any kind of racial or ethnic-- we can get into in terms of the actual discrimination that then happens. But diabetes itself, it's everywhere. And you're not issued a new political affiliation at your kid's hospital stay. You don't leave with a CGM and a stamp on a new voter card. You come in with your belief system and everything you think. And you you leave perhaps looking at different issues, but you may not look at them in a different way. And I think that is a mistake that a lot of people, perhaps in politics outside of diabetes, think that there is a monolithic voting block now. All parents of kids with type one feel this way. All adults with type one feel this way and they don't. I run a very large group in the Charlotte, North Carolina area where I live for parents of kids with type one. It's a Facebook group, but we try to get together. And I had to put a rule in 2020 about politics and politicking. I had to be very specific in what I was talking about. That was the first time, even though we had other issues [crosstalk].  

Sarah [00:30:38] I'm surprised you made it through 2016.  

Stacey Simms [00:30:39] Yeah. Well, it's so hard to remember now, but 2016 was different in terms of-- at least for my groups, in terms of the social media, the way social media pushed things out, the viewing arrangement, engagement kind of thing. It was there, but not in the same way that the last five years, I'd say, have really shown up..  

Sarah [00:31:00] No, it definitely pumped it up. Well, and I just think it's so interesting to watch because diabetes doesn't discriminate, and sort of public policy around diabetes doesn't discriminate. At one point you might have a politician who you loathe in every other situation who is doing something and you're like, well, dang it [inaudible]. Or you might have a politician who you usually support who is not supporting a policy you knew would make a huge difference in a type one diabetes community.  

Stacey Simms [00:31:32] It happens all the time. It happened a couple of days ago. Ron DeSantis signed into law a bill expanding eligibility for CGM for all people in Florida who were in Medicaid with diabetes who use insulin. And the vast majority of people who may not support him in the diabetes community look at that and say, great, thank you. That's a good thing. And CGM (continues glucose monitor) is a way to measure (real technical) interstitial fluid, the fluid under your skin. So you don't have to pock your finger. You just put the CGM, you're on.  

Sarah [00:32:04] It's a game changer.  

Stacey Simms [00:32:06] It's a game changer.  

Sarah [00:32:07] It's a game changing technology.  

Stacey Simms [00:32:06] It is absolutely incredible and there's a school of thought I subscribe to it that if you're using insulin, you should have access to a CGM. So that's a great thing. And you do see posts and people say like, "Oh, I hate him," but he did this good thing. But there are people who somehow kind of twist themselves into knots just to find a way that says, well, he didn't really or there's other things. It's amazing how what happens on both sides. We cannot divorce ourselves from our political jersey to say even with something that is a meaningful change to our family that I still hate that guy.  

Sarah [00:32:40] Yeah. And that's what's so I think unfortunate, is we have really accelerated-- or I don't know if we're making like core headed policy assessments when it came to our politics. Probably not, but it just feels like we really leaned-in in the last few years. Where it's like you can't do anything right. You are irredeemable as a politician to me. And I really do think diabetes and being a part of this community-- and this can happen with lots of sort of identity driven experiences. It can feel that. It can fuel the sense of like, you've crossed me on this thing that is so inherent to who I am. I cannot look at anything else. And I think that's fair. I think that's fair. I just think diabetes and because it is a health condition and because the health care industry those policies matter in like a day to day impactful way that is difficult to ignore, I think that just plays out a little differently.  

Stacey Simms [00:33:42] It does. It’s interesting too because our health care system is so complex and it's so hard to navigate with or without diabetes that the complexity lends itself to misinformation, to kind of-- I don't say burying the truth, but it's so hard to get at what really happened. I mean, you look at the price of insulin and how convoluted and complicated and the PBMs and everything else, whoever you want to support or whoever you want to hate, you can make a case for it because of those complexities. This person didn't go far enough. This person went too far. That's not a cap. That's a co-pay cap. That's not a legislative action. That's encouragement. And as you and I are talking, there is a cap for people in Medicare for insulin prices. But the lowering of the price that we saw from all the three big insulin makers, that's voluntary. They could reverse that at any time. So it's easy with that complexity. My local group, when I talk to moms a lot, we're just trying to ask what the heck happened? Like we should be supported.  

Sarah [00:34:47]  Just getting through the intricacies of the policy itself. And that's why the community support is important and also confusing. If you have six people saying six different things about how we should feel around this policy, that tells you how complex it is right there. Well, I also, as we're talking, realized your work in particular intersects with the complexities of politics and our partisan identities. It also, obviously, the title of your book, The Worst Diabetes Mom, intersects with parenting. Which is another place, I think, where we tell ourselves one thing and then the complex realities of being a parent or our children's existence come into play. When you wrote that book and you titled it that, what were you trying to help people understand? What did diabetes teach you about parenting?  

Stacey Simms [00:35:37] Boy.  

Sarah [00:35:37] And probably continue to do too.  

Stacey Simms [00:35:39] Yeah, it really does. I mean, my kids are 18 and 21 and there is no finish line in parenting. I don't know what I was thinking, but I kind of thought like there's no middle. You're not running across that ribbon. But I thought at some point I would be done, which sounds ridiculous when I say it out loud because I'm helping parent my kids in different ways now. Especially my son with diabetes is very independent, but I'm still helping him in new ways. And the book was kind of an answer to a shift I felt in the community. I started in diabetes in 2006, which predates the iPhone, which sounds like ancient history now. But it really predates social media. It predates continuous glucose monitoring. And while I really am so thankful for all of the technology, my son uses an automated insulin delivery system with a pump and a CGM to talk to each other like your son does. It's just amazing. And I never want to give that stuff back. But when you can see all the information, (and that's what happens with these systems every 5 minutes or every minute with some systems) as a parent, your impulse is I'm going to get this right. I'm going to do right by my kid. I'm going to do the best I can. And it's impossible. It is impossible to be perfect as a parent with or without diabetes. Why would we think it would be possible? So the book was a direct response to a free flowing conversation I was having on the Internet. Somebody in Facebook saying-- I think we're talking about overnight blood sugar checks before CGM. And I was not doing the same thing that this other parent was doing, and they were furious at me and they really did call me horrible names and everything else. And I said, "Well, I must be the world's worst diabetes mom." And that's when I just walked away from the conversation. But I thought, you know what? If I'm the worst, my kid's doing great. He's doing fine. Maybe I should share that story. And as I did and I shared all of our mistakes because I don't know about you, but we make mistakes every week, every day with diabetes. And those mistakes are how I learned. And those mistakes made us laugh. They made us stronger. And so those are what the books are all about.  

Sarah [00:37:42] Well, that makes me cry because I've had a terrible diabetes [inaudible] so it to feels good to hear somebody say that, even though I know that, even though I've read your book. It just again proves my point that diabetes is an excellent metaphor, because that's not the only place that transformation in parenting was happening. Where all of a sudden we were getting flooded with advice and expectations and advice when it came to parenting. But it's like if you think you're stressed and burned out from the standard around like normal everyday parenting, and on the possibility that your child could die. You could you just take that, dial it all the way up to 11. Because you do get in a space where you're like-- or you can think about all the time that I [inaudible] my favorite movie of all time is still by no use. And then I defined so many of my ideas about parenting and that now here I am, stupid millen, parenting a child with diabetes. And, look, I think that movie did a real public service, not just about organ donation, but also I can tell peop that scene Steel Magnolias, that's what did it is. That's what it's like. He could get a little wobbly. Just telling people like that's what a low looks like. It is dangerous. They need sugar. It's an easy fit. But also it's just like that's like the water I was swimming and then my dang kid got diagnosed with diabetes and it's just so intense. Because, I mean, again, you tell yourself in regular parenting just psychologically, if I do this [inaudible] it's just the pressure is so, so high.  

Stacey Simms [00:39:23] Yeah. And I love Steel Magnolias. I know it's not popular with diabetes. Well, a lot of people don't like it because a lot of people were blindsided by it. When you think about it, I have a friend who saw it as a young adult or a teenager, and they didn't know she lived with diabetes. And her mom was like, let's watch this. Back in the day. No idea. But when you watch that movie again, if you do, Sarah, watch the young woman with diabetes has no community. There is nobody else around her with type one. There's no camp. There's no friend. There's nobody to help her navigate that world. And I think while we've had lots of amazing breakthroughs with diabetes. And I'm going to sound really hokey now, but there really is no substitute for that community. And I think her life would have been so much different. And it's based on a real story.  

Sarah [00:40:13] Yeah, it's a true story. The brother wrote the screenplay.  

Stacey Simms [00:40:14] It would have been so much different.  

Sarah [00:40:16] You also never see her actually treat her diabetes. Like you never see a shot.  

Stacey Simms [00:40:20] That's probably for the best. Movies in TV are so bad at that. I'm just kind of thankful right there. Not saying like, "I'm low, I need insulin." Oh, my God. No. But you also mentioned parenting pressure. The one example I like to give is you can feel bad about how you pack your kids lunch. You can have the most nutritious food in the world without diabetes, but you can look online and see these amazing bento boxes and little notes and fancy cut outs. And I'm slapping together a sandwich, yogurt, a carrot and Cheetos or whatever. I'm throwing lunch together every day when they were little. And when you add diabetes pressure on top of that, it's not so much the outcomes because these kids are healthy- knock on wood. The technology and the knowledge. If you have access and education, it's so much easier in some ways. The mental load is still there. But I'm thinking about just the pressure on the parent to think about, am I doing this lunch right? Yes, you are. But you feel it every day. You feel like you're failing them when you give them the stupid lunchbox.  

Sarah [00:41:24] Yeah. I mean, the Internet is there to flood you with information about how you could be doing it better. Could be on everything [crosstalk].  

Stacey Simms [00:41:32] Yeah, but when you get that feedback, when you get numbers in your face every 5 minutes, it codifies that feedback in a way that I think makes us have to stop and say, "I can never be perfect at this." I'm going to be safe and happy, my kids are going to be safe and happy and that is enough. And you have to repeat it because 16 years in, I really do feel like the worst. I really wonder sometimes, did I give him too much independence? He went to Israel when he was 16 for a month with a non diabetes camp program and managed great. But do I still worry? Of course. Of course, you never stop.  

Sarah [00:42:07] Yeah. And I just think it's so hard because that feeling of am I doing it right? Am I failing? I use some of the tools I used before diabetes, which is that history. I think, listen, Sonia Sotomayor sits on the Supreme Court and they were like boiling her freaking needles to use them again. They didn't know what-- she could have been sitting at 500 every night for hours for most of her childhood. That's just the reality. [Inaudible] long live with type one diabetic without any of this technology. And I have to remind myself of that constantly, which is a thing I use on other [inaudible]. I'm not trying hard enough, but also doing a hell of a lot better than past generations.  

Stacey Simms [00:42:51] And that's really all you can do. And I know some of those folks will tell you they feel like technology puts an added burden on the parents. Now, you can't help it. You do want better outcomes. So you want to use that and you want to find ways to be great with your kids. But I love talking to adults with type one because they will set you straight.  

Sarah [00:43:08] They will. They'll be like [inaudible] 300 yesterday. Calm down. I'm like, "Okay, thank you. I feel better now." Well, and to circle back to the political point we started with, it's the same thing. There's too much pressure. We think we can perfect it. I'm a Democrat. I'm a progressive. This is not a secret. And I think what I see the most when I talk to my super progressive eldest child is this sense that there is a destination we can get to if they just give us the reins and get out of our way, we'd get there and everything would be perfect. And it's not true. And it's also torturous. I can see the way I felt like that for like most of my twenties and I was mad all the time. I was just mad all the time. Mad at them. Mad at the country. Mad, mad, mad because I thought perfection was achievable in politics if the people on the other side would just get out of my way. And I do think when we acknowledged the complexity-- and that's what I think what happens when you have a family member with diabetes. You just cannot avoid the complexities anymore. You cannot create a narrative based on your own experiences and emotions. Like it's not that those go mute, but there's just this very concrete data entry point that doesn't go away.  

Stacey Simms [00:44:29] Yeah, and I think it's important to understand too that-- and I'll be transparent, I'm a registered independent. I always have been. Part of that has to do with journalism. But I think it's really important to understand that every policy, as you well know, impacts people in slightly different ways. And I think in the diabetes community, if we stop listening, I've seen people who do not believe that some people were impacted a certain way by Obamacare. Obamacare helped so many people with diabetes because it lifted people up into insurance where they couldn't get insurance before. Pre-existing condition.  

Sarah [00:45:05] When I look back at when we had pre-existing conditions and type one diabetes, like, I just can't. I can't.  

Stacey Simms [00:45:11] But it hurt some people who now wound up paying for more because of the way their insurance plan was restructured. And I've seen some of those voices not being listened to, feel like they weren't valid. And I feel like you can't shake politics at the door. I mean, let's not be completely naive. But in the community like this, we have to listen to each other and we have to help each other. I'll tell you, and I may get in trouble for making this public, but one of the things that I do in my local group is we help each other out with supplies. It's not just insulin. If things cost more-- and they do on different insurance plans. High deductible, blah, blah, blah. Marketplace. I don't even know. Used to joke, I get in my minivan and here we are in the green market and we're trading supplies and we're going places. We're helping people. I don't care what your political affiliation is in that point. We need each other. And I feel like it's a little Kumbaya and I apologize for that. But the diabetes community has taught me that listening to other people and understanding that politics can be different. If I don't help this person now, that's when they need the help. It's now. The help may not be there from the government or from their doctor or from their clinic. So it's a real lesson in immediacy and listening to other people. And I don't drive a minivan anymore, but I'm still willing to get in my car.  

Sarah [00:46:33] Well, and here's the thing too. Back to this horse I just keep [inaudible], I think diabetes makes something explicit that is true, but that is hard to acknowledge outside of a chronic condition like this, which is that everyone's dealing with hardship.  

Stacey Simms [00:46:48] Oh, my gosh.  

Sarah [00:46:50] There are different levels of hardship. And I think diabetes just makes it so black and white. And really makes concrete and all these things we're talking about- the complexity, the hardships the people face in their everyday life, the reality that no one has a monopoly on being right, that you can't reach perfect, that you can't control everything. Like all these things that we say we know, we say we believe, but then something like this comes along and it's like, okay, we're about to put the rubber to the road on whether you believe all this. Like, I'll never forget one time I was listening to [inaudible] on Oprah Super Soul Sunday. And she was like, God doesn't love us if we stumble. And I was nodding along. I was like, "Amen, Sean, you tell them." Then she was like, "And He doesn't love us more if we get it all right." And I was like, "Wait, what?" We don't talk that loud. [Inaudible] that's not cool. You could have kept that part quiet. That's the part I really believed deep down that I did need somebody to call me to the mat on. But diabetes will call you to the mat on that.  

Stacey Simms [00:48:01] It'll do it every day, if not on an hourly basis. You hear those Dexcom alarms, you're like, what?  

Sarah [00:48:11] [Inaudible] When Felix was first diagnosed, I formulated this theory or put words to something that I think I had a theory on for a long time. I had a friend from high school who is a kind man, but he was like, "What did you do? You gave him so much sugar?" And I was like, bless. And I wasn't mad at him because I know that he is not a hateful person. But I told Nicholas, I was like, the next person who says that to me-- and nobody has. Full disclosure. So the next person that says that to me, I'm going to just say, "Nope, it's the chaos lottery. You could be next." Like, it's just a chaos lottery, man. It's what we're dealing with. And Diabetes will show you that, especially type one.  

Stacey Simms [00:48:52] Yeah. No, that's a grape with the chaos lottery.  

Sarah [00:48:55] The chaos lottery, man.  

Stacey Simms [00:48:56] I feel like we've been in that for years. No, it really is an autoimmune disease; anybody can get it. And I heard that quite a bit because my son was not yet two when he was diagnosed. So people could not puzzle how a child that tiny could have any type of diabetes. So we heard that a lot. And it took me a long time. It's funny to not just be defensive and say, like, "That's type two. He didn't do it." Because type two now we know is so much more complex than that. We know diabetes is caused by eating too much sugar. I get a little soapboxy (sic) like no one with any kind of diabetes wants or deserves it. So how you handle those questions when you're in the thick of the chaos at the beginning is a little different, I think, than how you handle them down the road. But yeah, I heard-- oh, we could have an offline conversation about all the stuff I've heard with the two-year-old. 

Sarah [00:49:43] But do you know what's underneath that? Here's what's underneath what people were saying that to you because your child was so young is because we think you do something to deserve it. And that means I can avoid it.  

Stacey Simms [00:49:53] I can avoid it. Exactly. 

Sarah [00:49:55] [Crosstalk] when it's a little tiny baby, it doesn't compute. And then people are like, but I thought kind of deep down you did something to deserve it.  

Stacey Simms [00:50:03] Like too many fruit snacks.  

Sarah [00:50:04] But he's under two, and so he didn't do anything because he's a baby. Oh, no, what does this mean? It's like you can see the sort of circuitry misfiring.  

Stacey Simms [00:50:15] Yeah. What can I do to avoid being you?  

Sarah [00:50:18] Yes.  

Stacey Simms [00:50:19] It's just like, oh, my gosh. 

Sarah [00:50:21] Exactly. And that's why I'm like, it's the chaos lottery. You can't, baby. Sorry. Well, and that's the other thing that's a perfect sort of illustration for what we face otherwise, which is you also get the "I could never handle it," which I also find very upsetting. I don't want to hear how amazing we are. I.'m really not interested in that. I can't even explain to you why. That should be something like you want to hear. Oh, mamma, god, you're such an amazing parent.  

Stacey Simms [00:50:51] I'll tell you I think why I don't like hearing it is because I don't want you to tell me that I'm amazing. I want you to figure out how to help me. I want more training in daycare. I want more training in schools. I want more help. I want more access. I want better staff. By telling me I'm amazing it says, "Well, you've got this. Carry on." And I resent that. I'm okay if my friend tells me I'm amazing. Why, yes, I am. And that's what we tell all special needs moms. I mean, we are special needs moms, even though diabetes is not very visible in many ways. I feel like that's almost a way to kind of get around all of the better access and education that really is needed and can certainly happen with diabetes.  

Sarah [00:51:35] It's so true. Yes. I think you're exactly right. It does feel like but you're on your own because we could never. So you better do it all by yourself.  

Stacey Simms [00:51:43] Right. And look how good you're doing.  

Sarah [00:51:45] Yes. Well, we had a little bit of experience because Felix had another disability. He has hemiplegia. So I was already sort of used to that undercurrent. Diabetes and hemiplegia are very, very, very different. There's no sort of day to day management with hemiplegia in the way that there is with diabetes. But we did have, I think, the only leg up, which was we didn't want to treat him as if he's a problem to be fixed. That was really important.  

Stacey Simms [00:52:16] Oh, sure.  

Sarah [00:52:17] And I think that's a valuable lesson in experience. I take that into my other kids because they don't have an outwardly expressed physical disability, but they are different. I always think about that Temple Grandin movie where her mother over and over again looked at her and said, "Different. Not less." Different. Not. Less. And I think that the diabetes community and the entire disability community has so much to teach all of us about that.  

Stacey Simms [00:52:48] Yeah. And that's the fact that you acknowledge that your other kids are also different, but not less. It's so important, this whole family aspect of diabetes. I have another child and there are so many issues because you have to give diabetes so much attention. You have no choice. And the fact that you're already involving your son siblings in this is so important. It's not a problem to be fixed. It is a situation that you deal with. You do your best. You move on. Sometimes it does stop you. Some it slows you down, it stinks. But then you go on and you figure it out. I'm going to cry. My son recently thanked me for not letting diabetes hold him back from the crazy stuff he wanted to do. I needed some [inaudible]. And I kept thinking like, wow, I felt like it really did stop you. Like it really slid you down. You had to do a lot of stuff to get where you went. But I can't say he didn't care as long as he got to do it because he cared. It was a pain in the ass. But he figured out a way to do it. We all talk about teenagers and how much they think and everything, and it is rough. But, man, when they come back around sometimes and like, wow, this is a human being who said thank you. Amazing.  

Sarah [00:53:57] I always tell my 14 year old when he starts to get revved up, I'm like, "Can we just get to the part in about 20 minutes where you apologize for being a jerk?" Can we just skip right to that part? That'd be great. [Inaudible] go right ahead to that point, if you don't mind. Yeah, I just think that, again, it's clarifying. It's a situation that clarifies what's worth doing. It's a crappy way to be clarified, but it does work. It's just like every typical thing. Everything doesn't happen for a purpose, but you can learn from everything.  

Stacey Simms [00:54:24] Absolutely.  

Sarah [00:54:25] [Crosstalk] the difficult things that happened to you in your life. That's very sweet. I did get a shout out that he missed me at diabetes camp. I have not gotten a thank you, but he's only eight. However, Stacy-- and this is fun because the next segment is going to be me talking to Felix about [inaudible]. My husband said, "Felix, did you miss me?" And ice cold this child responded, "Dad, I don't think I said the word dad once while I was there."  

Stacey Simms [00:54:48] Whoa.  

Sarah [00:54:49] Can you even?  

Stacey Simms [00:54:51] Yes, that's the sign of a good camp.  

Sarah [00:54:53] That's what everyone says. They're like [inaudible]. And it's true. I mean, he had a blast. But I was like, Felix, that's ice cold.  

Stacey Simms [00:55:01] That's an eight year old's honesty, though.  

Sarah [00:55:03] That's exactly right.  

Stacey Simms [00:55:06] Diabetes camp. I'm so glad you're talking to him. I did a couple episodes with my son talking about diabetes camp, and it's really fun and definitely preserve it because diabetes camp at eight will be very different. Do it every year. Even if you're going to prepare it, but do it every year [crosstalk].  

Sarah [00:55:20] There are a lot of teenagers there. He's like camp mom, that was her senior year and she was like she'd been for 11 years in a row.  

Stacey Simms [00:55:28] Yeah, my son went for eight years, I think, to his sleep diabetes camp, and now he goes to a regular sleep-away camp. He's working this summer. He's a lifeguard, so he's gone for eight weeks. Totally self-managed.  

Sarah [00:55:40] Totally self-managed. I'm going to record you say that. I'm obviously recording you say that [Inaudible]. 

Stacey Simms [00:55:47] Well, the next part of the sentence is, though, I still worry. So you have to record that too. But I let him go.  

Sarah [00:55:53] Hey, my grandmother was in her eighties and she tells me she worries about her kids all the time. And none of them have diabetes. That doesn't matter.  

Stacey Simms [00:55:59] You never stop. We started this by me talking about there's no finish line to parenting. So the bad news is you never stop worrying. But hopefully the good news is you also never stop teaching your kids, learning from them, enjoying them. And the worry is balanced out by all that good stuff. But I do say half the time, like, why did we have them? All we do is worry.  

Sarah [00:56:19] It's so true. What were we thinking. Well, I don't think that you're the world's worst diabetes mom. Just for the record.  

Stacey Simms [00:56:26] Thank you.  

Sarah [00:56:27] I'm going to put that on the record here at Pantsuit Politics. Thank you so much for joining us. I really appreciate it.  

Stacey Simms [00:56:31] It was wonderful. Thanks so much for talking with me.  

Sarah [00:56:43] For Outside Politics today, I'm joined by a very special guest, a guest who just informed me he is VIP. Introduce yourself, VIP guest.  

Felix Holland [00:56:52] Hi, I'm Felix Holland.  

Sarah [00:56:54] Felix Holland. How old are you?  

Felix Holland [00:56:55] Eight.  

Sarah [00:56:57] I invited you here to talk about Camp Sweeney, where you just spent most of June. Tell us, what is Camp Sweeney?  

Felix Holland [00:57:05] It's a diabetic camp.  

Sarah [00:57:07] In where?  

Felix Holland [00:57:11] Gainesville, Texas. 

Sarah [00:57:11] The great state of Texas. What do you think about Texas?  

Felix Holland [00:57:15] It was hot.  

Sarah [00:57:18] It was hot. You learned about water burger, though?  

Felix Holland [00:57:20] Yeah.  

Sarah [00:57:21] Okay. So what is diabetes camp? What does that mean? And what ways is diabetes camp the same as regular summer camp. And in what ways is it different?  

Felix Holland [00:57:30] The same it's like you have activities and it's different because, like, there are almost all diabetics.  

Sarah [00:57:39] There are some people that aren't diabetic. Tell us, what do you call those.  

Felix Holland [00:57:42] Nonnies [sp]  

Sarah [00:57:42] Nonnie. Some people bring friends that don't have diabetes and they're called nonnies. And so when every kid at camp has diabetes, what does that change? I would think mealtimes are kind of different, right?  

Felix Holland [00:57:55] Yeah.  

Sarah [00:57:57] How is mealtime different?  

Felix Holland [00:57:58] Because we all have to get into a thing they call the flight pattern, which was there was this very specific spot you had to stand and prick your finger and they give you insulin.  

Sarah [00:58:11] Yeah. Because they know exactly what carbs are in your meal for you because you picked out what you wanted beforehand, right?  

Felix Holland [00:58:16] Yeah.  

Sarah [00:58:16] Very cool. So you learned a lot about diabetes. That's one of the code of living. Tell me what the code of living is.  

Felix Holland [00:58:24] It's honestly, humility, preserve diabetic control, respectfulness. I can't name all. 

Sarah [00:58:32] And you get to be in the code of living if you achieve those things, right?  

Felix Holland [00:58:34] Yeah. You get to be a code of living representative.  

Sarah [00:58:39] I love that. So what does pursuit of diabetic control mean?  

Felix Holland [00:58:42] It means like living in a range, but also not feeling like left out outside of camp, for your diabetes too kinda.  

Sarah [00:58:55] I like that. Tell me more about that.  

Felix Holland [00:58:57] It's like...  

Sarah [00:58:59] Do you feel left out sometimes because of your diabetes?  

Felix Holland [00:59:01] No.  

Sarah [00:59:02] That's good. I think it means integrating diabetes as a part of who you are, right?  

Felix Holland [00:59:07] Yeah.  

Sarah [00:59:08] I think that's really, really important. Did you feel like you learned a lot about that at Camp Sweeney?  

Felix Holland [00:59:12] Yeah.  

Sarah [00:59:13] What was it like to be around kids that know exactly what it's like?  

Felix Holland [00:59:17] It was just nice.  

Sarah [00:59:19] Nice and normal.  

Felix Holland [00:59:20] Yeah.  

Sarah [00:59:21] Yeah. So what about Camp Sweeney is just like summer camp. Like, what were your favorite summer camp activities you did at Camp Sweeney?  

Felix Holland [00:59:28] Like boating and canoeing and fishing and stuff.  

Sarah [00:59:31] And what was your favorite activity? Which I got to tell you, this is not very common for summer camp.  

Felix Holland [00:59:37] Broadcasting.  

Sarah [00:59:38] Broadcasting, making your mom on the podcast proud. Tell us about broadcasting.  

Felix Holland [00:59:42] It was like this thing where it was like a live thing and there were three seats for the host.  

Sarah [00:59:50] Mhmm.  

Felix Holland [00:59:51] It was like we had segments and stuff and it was like normal broadcasting.  

Sarah [00:59:57] That's like a radio show.  

Felix Holland [00:59:58] Yeah.  

Sarah [00:59:59] You played songs. What was the first song you played?  

Felix Holland [01:00:01] I think it was Even Flow. 

Sarah [01:00:04] Even Flow by Pearl Jam. Daddy and I could listen on an app and we knew immediately who picked that song.  

Felix Holland [01:00:09] Yeah.  

Sarah [01:00:10] So you could just select songs to play. And then you have segments where you talk about what it's like at Camp Sweeney.  

Felix Holland [01:00:14] Yeah.  

Sarah [01:00:15] And I got a special shout out, which was very funny because you didn't write me back. Why did you never write me back?  

Felix Holland [01:00:20] Because I was having too much fun. I was having F.U.N into the M.A.X.  

Sarah [01:00:26] So you were there for 18 days. That's a long time to be away from home at eight years old. Did you get homesick at all?  

Felix Holland [01:00:31] No.  

Sarah [01:00:31] No. Not even one millisecond where you are like, man, I miss home.  

Felix Holland [01:00:36] Yes.  

Beth [01:00:37] Okay.  

Felix Holland [01:00:38] But it wasn't about you. It was about Amos.  

Sarah [01:00:42] What did you miss about Amos?  

Felix Holland [01:00:43] It was just that I was, like, laughing crying.  

Sarah [01:00:47] And you missed Amos because you laugh and cry with Amos a lot.  

Felix Holland [01:00:49] Yeah.  

Sarah [01:00:50] That makes me happy. Do you want to go back next year?  

Felix Holland [01:00:53] Yes.  

Sarah [01:00:54] So you want to go back. You really loved it. You really loved Camp Sweeney. What would you say to a kid your age who might be afraid to go to diabetes camp who's nervous? What would you tell them to encourage them to go?  

Felix Holland [01:01:06] It doesn't make you feel like you're like the only one in the whole world. You're like in a cabin with a bunch of diabetics.  

Sarah [01:01:16] How does it make you feel?  

Felix Holland [01:01:17] Good.  

Sarah [01:01:18] Good.  

Felix Holland [01:01:19] Yeah.  

Sarah [01:01:19] Included. Understood.  

Felix Holland [01:01:22] Yeah.  

Sarah [01:01:24] Well, I'm really, really, really happy you had that experience and that you had so much fun at Camp Sweeney, even though me and your dad really missed you.  

Felix Holland [01:01:31] Yeah. You wrote a whole song.  

Sarah [01:01:34] I did. I wrote a whole song to the tune of Hello Mother and Hello Father.  

Felix Holland [01:01:38] Yes.  

Sarah [01:01:38] Write me back, oh, Felix Holland. Write me back. [singing].  

Felix Holland [01:01:44] Yeah, that one.  

Sarah [01:01:49] Thank you for coming on Pantsuit Politics and telling us about diabetes camping at Camp Sweeney.  

Felix Holland [01:01:53] Thank you for having me.  

Sarah [01:01:55] And thank you for all of you for listening to this very special diabetes focused episode of Pantsuit Politics. We will be back in your ears next Tuesday together, back from summer break. Officially, Beth and I back on the regular schedule. It's going to be great. We can't wait to get back in the swing of things with all of you. Until then, keep it nuanced y'all.  

Beth: Pantsuit Politics is produced by Studio D Podcast Production. Alise Napp is our managing director. 

Sarah: Maggie Penton is our community engagement manager. Dante Lima is the composer and performer of our theme music. 

Beth: Our show is listener-supported. Special thanks to our executive producers. 

Executive Producers: Martha Bronitsky. Ali Edwards. Janice Elliott. Sarah Greenup. Julie Haller. Helen Handley. Tiffany Hasler. Emily Holladay. Katie Johnson. Katina Zuganelis Kasling. Barry Kaufman. Molly Kohrs. Katherine Vollmer. Laurie LaDow. Lily McClure. Linda Daniel. Emily Neesley. Tawni Peterson. Tracey Puthoff. Sarah Ralph. Jeremy Sequoia. Katie Stigers. Karin True. Onica Ulveling. Nick and Alysa Villeli. Amy Whited. Emily Helen Olson. Lee Chaix McDonough. Morgan McHugh. Danny Ozment. Jen Ross. Sabrina Drago. 

Beth: Jeff Davis. Melinda Johnston. Michelle Wood. Joshua Allen. Nichole Berklas. Paula Bremer and Tim Miller.