

A difficult but important interview with Nicole Smith-Holt. Her son, Alec, died in 2017 just after he came off his parents’ health insurance and realized he couldn’t afford his supplies. He began rationing insulin and died less than a month later.

Stacey talks to Nicole about how this could have happened and what her message is to the diabetes community and to lawmakers. Nicole will be at the #Insulin4All rally and protect Sept 30 at Eli Lilly headquarters.

More information:

Insulin4All Protest information

NPR: High Price of Insulin Leads to Lethal Rationing

Snopes: Did Alec Smith Die Because He Couldn’t Afford Insulin

Join the Diabetes Connections Facebook Group Sign up for our newsletter here Get the App and listen to Diabetes Connections wherever you go!

Click here for iPhone

Click here for Android

Episode Transcript

(Our transcripts are still in beta – a human hasn’t looked at this yet and machines don’t yet speak diabetes. Please forgive any issues)

Stacey Simms 0:00

Diabetes Connections is brought to you by OneTouch. Every touch is a step forward by Dexcom. Take control of your diabetes and live life to the fullest with Dexcom. And by know foods, no grain, no gluten, no guilt.

Announcer 0:18

This is Diabetes Connections with Stacey Simms.

Stacey Simms 0:24

This week, a bonus episode. This is a tough one, but an important interview. I hope you’ll listen to the whole thing. You probably have heard about Alex Smith, young man who died last year after he couldn’t afford insulin. Well, you’re going to hear from Alex mother, Nicole, and she’s going to tell us the whole story about how this could happen. This is a story about the price of insulin healthcare in America and about a young man trying to be independent. There’s a lot to unpack here and Nicole gracious enough to take us through the entire story. She is hoping to educate others so that this doesn’t happen again. And not just on the personal level, so that this doesn’t happen again, because it can’t because she’s trying to affect policy on the state level about getting emergency affordable insulin. And she’s trying to affect policy on the national level, where there could be more transparency when it comes to the insulin makers. And the reason that I’m putting this episode out now and as you’re listening, this is the last week of September of 2018. is because there is a protest planned this weekend at Eli Lilly headquarters.

Now, if you’re listening later on, don’t stop listening. This is a story that is a cautionary tale in a lot of ways. And I think we can still learn from it. And I certainly don’t expect this issue about the pricing of insulin to go away after the protest this weekend. But it’s very timely right now. And I do think we’re at a tipping point in terms of health care in our country. I’m going to link up more information from T one International, the people behind the in person protests that’s going on in Indianapolis at blowy headquarters. But there’s a lot you can do if you can’t be at that protest, and you can learn more about T one International, going to their website through ours. I will link it up. As I said in the show notes. I’m also going to link up a few of the national stories that have already been done on Alex Smith and Cole Smith. Holt. Probably the best well known of those was on NPR, they did a very long story about the high cost of insulin and the rationing. But in recent days, network TV stations have done similar stories. If you haven’t heard this story, you’re probably thinking How could this happen? It could never happen to us. Right? But if you have heard it, you already know how quickly this all happened. And how when Nicole takes us through, it becomes clear how it really could happen to any of us. If things don’t change. Here’s my interview with Nicole Smith Holt. Nicole, thank you very much for joining me a lot to talk about here. And I appreciate you giving me some of your time. Thank you.

Nicole Smith-Holt 3:09

Well, thank you.

Stacey Simms 3:10

You know, it’s it’s had to have been a very difficult and long year. We many people in our community are familiar with the story and we will go through what happened. When we look at this issue, many of us within the community who have insurance don’t realize the cost. We just go ahead. We filled the prescription. We’re happy to have the insurance that we have. Is that what happened to you? I know that Alec was on your insurance for a long time, you may turn 26. Just last May. But were you aware of the cost before this happened?

Nicole Smith-Holt 3:45

No. You know, when he was first diagnosed back in 2015, his first trip to the pharmacy when he had to pick up all of his initial, you know, supplies and as neater and test strips and as insulin He came home, he’s like, holy crap, Mom, you’re not gonna believe how much I just spent at the pharmacy. I was like, well, I bet she was just because it was our first time and we haven’t you know, dipped into the deductible or anything, I think it’ll get better. And that that time, I think it was maybe four or $500 out of pocket that initial time. And I’m like, Let’s wait and see what happens next month. month two came and it was like $275 out of pocket with the insurance but I’m like, well, that’s better. But that’s still quite a lot. And you know, the first because I’d already been in the middle of my insurance year, I couldn’t make any changes to my insurance or anything like that. And, you know, we’re pretty healthy family. So we never worried about you know, having that deductible or having to pay co pays or anything like that. You know, we went to the doctor annually, we did what we needed to do and that was about it. The following year when, when my insurance came up for renewal, I thought, well, I wonder if there’s anything I can do to help him with, you know, these monthly expenses at the pharmacy. So I decided to opt into the health care savings account program that we have at work. So I was getting some money taken out of my paycheck every two weeks to put into an account where he could use a benefit card at the pharmacy to help with his co pays and his deductible. And so that helped him a lot, you know, the second year, but then when we started going into the third year, I was like, Well, I’m not going to do that this year, because you’re only going to be on my insurance for five months, six months, you’re not going to be on my insurance anymore. The rest of us don’t mean this, I’m not gonna get to participate in the healthcare savings account. And, you know, we knew that he was going to be looking at some pretty high out of pocket expenses. We just had no idea it was gonna be as expensive as it was.

Stacey Simms 6:05

Okay, so let’s back up a little bit. Alec was diagnosed at 23. So he was already a young adult but still young enough to stay on your health insurance, which you can stay on up to the age of 26. Can you take us back through his diagnosis? How did he find out so?

Nicole Smith-Holt 6:23

So he had started feeling really quite ill like he was coming down with the flu or you know, some sort of virus that was just kind of kicking his butt and he couldn’t shake it. for like a week, he kept complaining of just feeling really ill like, just not himself, feeling sick, like lethargic and having an appetite at one point and then feeling like he couldn’t eat anything else feeling thirsty the night before he actually went into urgent care. He said that he was up most of the night, frequently going to the bathroom. feeling lightheaded, feeling nauseous, feeling shaky, feeling like he had muscle cramps. So when he called me that morning that he went in and explained, but his symptoms were I was like, you know, I feel like you’re dehydrated. I feel like you know, something that’s going on, this is lasting too long. You really need to get in. So when he went in, and he told he went into urgent care, and he told them his symptoms. Luckily, right away, the first thing they thought of was diabetes. And so they had done their test and his blood sugar’s were like 459. And that so they hooked him up to some failing because he was really, really dehydrated. And with the high blood sugars, I don’t know how he drove himself to The doctor, but he did. They kept them there for a couple hours monitor town gave them a bunch of insulin. You know, did it click diabetes education, give him a bunch of prescriptions. And once those blood sugars came down under 300, they released them. He called me from the clinic and he was like, you know, this is what they’re telling me I have and I was like, Are you serious? You know, at that time, what I knew about diabetes was they said, type one, I’m like, that’s juvenile diabetes. You’re not into the mall anymore. And he was like, yeah, so we did a quick computer search and found out that Yeah, you don’t have to be a juvenile to be diagnosed with Type One Diabetes, that more and more adults are, you know, getting a late diagnosis of it. He came home and he was, you know, we went through all the paperwork, looked at, you know, the diet changes that he needs to make, looked at, you know, the lifestyle changes that he needs to make. He made up His appointments with the dietitian and the endocrinologist and he seemed to really accept it well, and, and was like, you know, this is what I’m stuck with. This is what I’m gonna have to deal with. This is what I’m gonna have to live with for the rest of my life. I’m gonna have to take this seriously. And he did he, he went through and he completely changed his diet, he became more diligent on you know, counting his carbs and taking his insulin.

Stacey Simms 9:34

What’s that? Like? I mean, I had such a different experience. Obviously, my son is so tiny when he was diagnosed, what was it like to have your your young adult son going through that? I mean, did you want your help? I know that you’re, you know, you have a close relationship, but was he was the family involved? It was more like I got this.

Nicole Smith-Holt 9:49

early on. He was like, you know, can you help me? I don’t know. You know, you know, he had never really done grocery shopping for himself and yet he still lived at home. So we kind of went through You know, what would be you know, healthy options, lower carb options. You know how to take things you know more seriously, instead of eating a whole pizza, go down to maybe a salad and like two pieces of pizza, which was really hard for him because he lived on tacos and pizza and beer and you know, pop and Bruce typically, and now he needed to switch to water and other types of things. So he did want my help at the beginning, but then I think towards year two, you know, closer to you know, being being a diabetic for about a year he was just, I think he had gotten taken enough of my my assistance and was like, man, I got this, you know, because I would ask him all the time, I’m like, what are your sugars? Like what are you eating blah blah, blah. He’s like, Okay, stop nagging. Don’t okay. Just like all like it’s not nagging him helping, talking, right.

Stacey Simms 10:57

So fast forward a bit, though. He then was on your insurance. As you mentioned earlier, he had to come off of your insurance when he turned 26. And he was working, but he didn’t have insurance at work.

Nicole Smith-Holt 11:10

Right. So he was a manager of a restaurant. Well, it was a new position at that restaurant prior to him becoming a manager. He had worked there for about five years as a server host bartender, and it’s a small family owned restaurant. They only have three locations in the state of Minnesota. If you have under a certain number of employees that are full time. They don’t have to legally offer insurance to December of 2016. He finally took the promotion that they had been offering him for several months. I think he felt like you know, taking the promotion and getting a pay raise. You know, going into a salary position with guaranteed hours of guaranteed paycheck was going to be easier for him to handle his the cost of his diabetes versus Living on tips and stuff like that he wanted that security. I know I had talked to him several times, it was like, you know, you have to get into a position that offers benefits. You need to have insurance when you have diabetes. And he was like, Well, I’m thinking if they open up another restaurant, they’re going to have enough employees that, you know, they’d have to offer us insurance. And I’m like, you know, who knows how long it’s going to take them to open up that fourth restaurant, you can’t bank on that. So in February of 2017, when I knew we were approaching his birthday in March in May, I started playing around on the computer with the Affordable Care Act and any kind of medical assistance programs state of Minnesota might offer. And unfortunately, with his increase in his salary, he didn’t qualify for the Mentor Program, or you know, he wasn’t considered disabled. So he didn’t qualify for disability. He, the Affordable Care Act, he made too much money for that. So what we’re left with was shopping the marketplace. And unfortunately the marketplace doesn’t have, you know, great policies. What we were looking at, where he could keep his same endocrinologist and stay within the same healthcare system would have cost him $450 a month with a 70 $600 deductible, which meant he would have been paying for everything out of pocket, including the monthly premium for good six months in his bed just didn’t seem realistic.

Stacey Simms 13:38

Okay, so just to translate, because I think most people are familiar with what you said, but that would be a monthly payment to the insurance, you know, out of pocket $450 a month, and then you pay everything up to 7500. Once you pay that, yeah, then the insurance covers it. So just to kind of make it clear. I think a lot of boards go by and you know, most people understand but at the same time when you think about it like that, it is so much money.

Nicole Smith-Holt 14:07

Oh yeah, especially when you’re looking at, you know, the average diabetic out of pocket spends between 1002 thousand a month on their insulin and supplies that they don’t have insurance plus that $450 insurance premium. That would have been 80 to 85% of his monthly income just paying his medication supplies and insurance that would have left him very little to afford his rent and car insurance and gas and groceries and all the other bills that everybody else has to pay every month. So he decided that because it was going to be so expensive that he would just pay out of pocket, skip that $450 a month insurance premium, bite the bullet, go to the pharmacy and pay what he had to pay until he could get a new job get something with benefits. So on June 1 was The first month without insurance. He had done his refill for his son’s insulin supplies at the end of May. So, he, towards the end of June, it was like June 21, or 22nd was the first time that he went to the pharmacy to pick up his insulin, needles and test strips and all of that. The pharmacist told him that his bill was 1300 dollars, and he didn’t have 1300 in the bank. He knew he had a little bit of insulin left at home. So he figured that he could maybe change his diet a little bit, is what we’re guessing because of what I saw in his refrigerator and stuff when we had to clean out of this apart his apartment. When his body was found on June 27. Every single time that he had in his apartment was kind of scattered around and kept Empty. He had not a drop of insulin left in his apartment. His refrigerator was full of low carb foods, vegetables, fresh vegetables, fish, chicken eggs. Think anything that was not gonna spike is for increases need for insulin he was eating. I know his his girlfriend had seen him on Sunday, which was two days before he was found and he was not looking good. She was concerned. He just said that he was really tired. Not feeling well. He was out with some friends on Saturday night. Because one of his friends was moving to Texas. They were having a going away party for him. So she thought maybe he was just feeling a little hungover or just coming down with something. But she noticed that he had difficulty staying awake. He was complaining about abdominal pains. She wanted to go to a food truck festival. He he just said to her straight out, he’s like, I don’t have enough insulin to eat that kind of food. I can’t go to the food truck festival. So, you know, she didn’t think anything, you know, was odd about that. So they went to like a little beastial for dinner and apparently he couldn’t even eat at school and his stomach hurts so bad. And he was complaining of, you know, like a shortness of breath. She figured that he was coming down with like a respiratory something or just, you know, wasn’t feeling well. So she had left him that night, and that was the last time anybody saw him. On Monday morning, he called in to work so that he did not feel like he could safely drive that he was vomiting, severe abdominal pains and was having shortness of breath having a hard time breathing. That was the last phone call that he made to anybody. He was found on Monday when his girlfriend was checking in on him because she had been calling him all day on Monday, all day on Tuesday. And I had sent him a text message on Tuesdays letting him know that I was coming that evening to drop off something for him. And I didn’t hear anything. He didn’t text back. About five minutes after I sent that text to him, letting him know that I was coming over that night was when I actually got the phone call that he had been found.

Stacey Simms 18:28

I’m so sorry to take you through all of this again. And I do appreciate you sharing this story to help others. When did you all find out and how did you find out what had happened? That wasn’t, you know, an accident. It wasn’t something that Oh, no, you wasn’t taking care of himself or things like that, that people say? Mm hmm.

Nicole Smith-Holt 18:48

Um, you know, when his girlfriend had gone to his apartment that evening when she can get ahold of him by phone, which is unusual when she went to his apartment. She saw his car there. He wasn’t answering his door and he wasn’t answering his phone. So she knew something was wrong. That’s just not typical behavior for Alec. She was able because he lived on the ground level the apartment, she was able to open up on his windows and climb into his apartment. And she’s one that actually found him and started making phone calls and calling 911 and calling family. And as soon as I got there, and I tried to go into his apartment, Please spend a lot of man and I asked them I’m like, you know, what, what is it like in there? You know, you have your first thought is, is he hurt? Did somebody hurt him? Or did he hurt himself or and they were like no, no, nothing like that. The medical examiner had come and I had explained that you know, he was a type one diabetic and in his first impression from from the scene was that he had no insulin, so he felt strongly that it was related to the diabetes

Nicole Smith-Holt 20:04

and my heart just just saying

Nicole Smith-Holt 20:10

I guess I’m I couldn’t understand that.

Stacey Simms 20:13

Yeah. So you were describing earlier how you found the insulin pens empty Do you found low carb foods? When did you all really figure out that this was all about rationing insulin?

Nicole Smith-Holt 20:26

Yeah. You know, speaking with this girlfriend, you know, just sitting down and putting, trying to put a timeline together, finding the receipts in his car from the last time that he had picked up insulin in realizing when his refill was due. Looking at the, the you know, when you get your, your prescription they usually have like, how much you owe and what it would have cost without your insurance or what you know the list prices and just kind of looking at his bank account and looking at the the, the the expense and looking at when he went to the pharmacy. You know, it’s just like it was like putting a puzzle together and kind of recreating those last few days for Alec.

Stacey Simms 21:22

You said earlier that you have pretty healthy family you’d never really used the the HSA or the healthcare savings account on your health insurance. Was your one of your first thoughts had to have been at least I’m trying to put myself in those shoes like how could this possibly happen?

Nicole Smith-Holt 21:39

I think to myself on a daily basis that this should not be happening to anybody. Nobody in in the United States should be struggling to afford health care or their prescription medications. Especially medications that are not optional but are life saving. That is the only thing created to keep Somebody’s like a type one diabetic alive. That pharmaceutical company should not be profiting from this diagnosis from people having to, to use insulin to stay alive. It should. It’s extremely frustrating. You know, here we are in 2018. Living in the United States, what people consider one of the wealthiest countries in the world. And you read about people who struggle who go into debt who are in their 40s or 50s having to move back home with their parents because they can’t afford grants and their diabetes supply is an insulin. Or you read about, you know, people who are using expired insulin that they’ve traded or received from somebody A Facebook black market, or you hear about families that are sharing insulin because they can’t afford to have more than one diabetic in the household. It’s It’s heartbreaking. It’s something that should not be occurring, especially when you look at the United States. And then you look at, you know, a country that we consider to be a third world country, places like Mexico or places, you know, in the Middle East or, you know, places in countries of Africa that they’re receiving free or a very reduced, affordable price for their insulin. It’s so frustrating. It feels like pharma is doing this intentionally because they know that you don’t have an option. You pay for this or you die. So they feel like you They can charge whatever they want. And you either pay for it or you die. It’s frustrating.

Stacey Simms 24:06

What about people who say, and I’ve seen this on social media and we’ve done shows on it before? Well, there’s old formula insulin at Walmart for $25. You know, why didn’t you just go get that?

Nicole Smith-Holt 24:19

Yeah. So, you know, there is a lot of talk about the Walmart insulin and I did talk about that two weeks ago when I was in DC and, you know, sat at a, a hearing for prescription drug pricing. Most people do know that there is, you know, the Walmart insulin for $25. But it is, it is an old insulin, it’s hard to manage. Most endocrinologist don’t even know where to begin to assist you with it. There’s no regulations over it so you don’t know how much insulin that you’re supposed to take because it doesn’t work the same way as the fast acting or the longer

Stacey Simms 25:00

Why it’s a different

Nicole Smith-Holt 25:01

one. It’s, it’s old, it’s there’s a lot of fillers in it, the insulin is not a great quality. It doesn’t react when your body is the same way. It’s very difficult to manage. Somebody who has a busy lifestyle like Alec who worked, you know, as a manager would work crazy hours, what would not a consistent lifestyle would have been very difficult for him to manage it and still be a functioning employee. You know, you have to it’s very regimented. You have to take it as specific time every day you have to take the same amount. You have to eat the same things every day at the same time every day, and hope that your body accepts it. Not every diabetic can use that type of insulin. It was not recommended that Alec use it he I know had spoke to his under chronologist about it explaining that he was going to be without insurance. And they did not recommend that it would be an appropriate option for him because of his lifestyle. And you know that it ends up causing diabetics to have really high highs and really low lows. So then again, you’re using a lot more test strips, which those are really expensive as well. So it’s like you’re treating, you know, one expense for the other for some people. You know, in a life or death situation, I absolutely would recommend, you know, using it to save your life, but I wouldn’t recommend somebody using it to maintain their life.

Stacey Simms 26:36

You’re in Minnesota, and I know you’ve spoken to legislators, they’re trying to get some things done. What are you pushing for in Minnesota?

Nicole Smith-Holt 26:45

Yeah, right now we’re working with Representative Aaron Murphy. She last year had I don’t think it was even last year was this year she had introduced a bill it’s called the alex smith emergency insulin act. It didn’t, it didn’t pass the first time it was introduced. And so we’re hoping that with enough voices and enough push, we can get that push through for the next legislative session. But it would provide free or on a sliding fee scale insulin supplies for a diabetic and an emergency type situation like, you know, they lost their job or they just aged out for their insurance or they’re new to the state of Minnesota and they don’t have time to get signed up for public assistance or whatever. You know, the state would buy the insulin and supplies a bulk rate and would be able to administer it to a type one diabetic. Well, it would be sent to a pharmacy or sent to a clinic where they would you know, go through the intake process to make sure the person qualifies for free your Sliding Fee assistance while they get back on their feet.

Stacey Simms 27:53

Is there resistance to that or people pushing back if you have heard from drug companies saying

Nicole Smith-Holt 27:59

no, we have haven’t really heard anything like that. I’m hoping you know, I’m my husband is part of the SEIU healthcare union. So we’ve got the backing of that union, I’m part of the main program, or maybe union and Minnesota. And I’ve got the backing of them. And, you know, we’ve got a, it feels like a lot of support in Minnesota. So we’re hoping that, you know, the next session, we can get this pushed through. I think both of our unions are really going to start campaigning hard for this. I think the last time that it was introduced, there wasn’t a whole lot of time for us to prepare to really push for it. But I think this time, given we’re gonna start early, and we’re gonna start we’re gonna push hard.

Stacey Simms 28:49

So at last year’s protests, there was a protest in front of Lilly headquarters in front of Eli Lilly headquarters, and I know they read a statement from you about this. Have you talked to the Eli Lilly or any of the any of the insolent companies?

Nicole Smith-Holt 29:04

Yep. So back in May, I was in Indianapolis. I did a press conference in front of Eli Lilly and I was invited to attend their quarterly shareholder meeting. So I went to the shareholder meeting and then I was invited to have a meeting with the Vice President Mike Mason. So I sat down with Mike made fun and shared Alex story and shared a picture of Alec and you know, shared with him what what my thoughts were on the insulin crisis and, you know, throughout a few ideas of ways that they could help with the situation. And at the time, Mike Mason seem to, you know, be empathetic You know, he appeared to really listen to my story and acknowledge that there is there is issues surrounding the affordability of insulin. I think that they are kind of in. They don’t really see the whole whole issue. I think they are misguided in ways and they feel like some of their their approaches to the affordability issue are the answers. I think that they tend to their usual responses, that the pricing issue is complicated, it’s complex, and they’d like to pass the buck off of to pharmacy benefit managers and insurance companies and physicians and hospitals and a lot of times I feel like they don’t own their portion of the problem. You know, the list price is too high. You know, Let’s start there. And most people do acknowledge that, you know, having all these middlemen within the whole chain of supply causes the price to go up. But I think that, you know, if they can start on there and with the lowest price, we might notice a decrease. Yeah, you know, there is a huge problem with the pharmacy benefit managers and the insurance companies, but I think, you know, to start making an impact in the lives of type one diabetics, and we have to absolutely have transparency, we need to know, you know, how much it actually costs to create a vial of insulin. Yes, you know, rumor is less than $1. But yet they sell it for, you know, anywhere up to $400. That’s a huge profit,

Stacey Simms 31:58

but right but we don’t know what that person Is because there’s no transparency and nobody will talk about it. It really is incredible. So you’re going back to the protest this year, you’re going to the protests in Indianapolis, what do you what do you hope people take away from that protest? What do you hope happens?

Nicole Smith-Holt 32:15

I hope that the insulin makers realize that we’re not going away. We’re not going to stop fighting for what’s right. We’re going to continue to fight for the lives of the type one diabetics, that something needs to be done. You know, laws need to be in place. Big Pharma has been allowed to police themselves for far too long. The Greed has gotten to be so extensive that it’s, it just makes me ill. You look at their financials and you see what their what their profits are per year. And you see what they spend on marketing and you see what they spend on lobbying. And you realize all those dollars they make, and yet there’s still people out here dying. Because it can’t afford it. It’s so frustrating and it’s not right. And we’re not gonna stop fighting until there’s an end to this.

Stacey Simms 33:11

What’s the reaction been to you, as you’ve been telling your story? Have people been shocked by this? I have people outside the diabetes community. Do you think the eyes are opening? Finally?

Nicole Smith-Holt 33:22

I think eyes are opening. But yet, when people hear my story, they are absolutely stunned. I think if you have, you know, insurance, especially through your employer, and you don’t have you know, this huge deductible, you don’t understand what it’s like for people who are forced into these really crappy insurance programs, or the people that don’t have insurance. If you don’t understand how the affordability issue or the medications or the out of pocket expenses can be true. Like, if you’re not experiencing it, it doesn’t happen. And so I think when people Hear Alex story. They realize that really bad things are happening to really good people out here because of our health care system in the United States. And I think people are really getting, excuse me pissed off at our government for allowing this to happen.

Stacey Simms 34:19

I’ve definitely seen more talk over the last couple of years than I have since joining the community almost 12 years ago. And I’ll just share a quick story from our side. We have great insurance. We’ve been very fortunate for that. But I did give, as many of us in the community doing gave some insulin to somebody who needed it a young adult actually who had a gap in insurance, and then it turned out that we were going to come up short. So I went to my pharmacy and said, Hey, I need an extra vial. And she it’s usually like $25, I want to say, and she rang it up and it was $300. And I had never as you said I had never experienced that. We’ve had great insurance. We’ve never had to worry about the cost. And I’ve known the pharmacist since we’ve been diagnosed I say we but you know, as my son obviously known her for more than a decade, and she was able to do some magic and make it a vacation emergency, I’m not quite sure what she did, and got it covered. But she said, I can only do this once, maybe twice a year. And then I was stunned. I mean, $300 a vial. That was insane. And as you say, I think it’s almost a random number. If someone else was similar insurance, it might have been $400. It might have been $275. It didn’t seem to really correlate to anything.

Nicole Smith-Holt 35:29

And that’s what Alex used to say to it’s like, one month, he would go to the pharmacy and in he would buy the same thing every single month, you know, the same box of lancets in the same box of needles in the same box of test strips and the same amount of insulin. In one month, it would be $250. The next month would be $325. The next month, it would be you know 300 it’s like why is it never consistent.

Stacey Simms 35:54

What do you think Alec would make of what you are doing. I mean, he would be so proud of you. But I, you know, not knowing his personality. But

Nicole Smith-Holt 36:04

he would be really, unfortunately, I think you’d be really embarrassed. And I think that he would be.

Nicole Smith-Holt 36:11

Unfortunately, I think he would be upset that he’s his name and his face has gotten so much notoriety. But I think he would be pleased to know that it’s helping other people. You know, Alec was kind of, you know, in some ways, he was an introvert, and he never really wanted any attention on himself. He was a very proud and independent and hardworking young man. And I often, you know, wondered if he ever thought about quitting his job and just, you know, utilizing, you know, the assistance of the states for people who have no income, you know, I know that he would have never done that just because, you know, the type of person that he is and so many people have said, you know, well, you should have quit his job. He should have been on public assistance. certain medical assistance or whatever, he would have had to pay anything and he’d still be alive. And it’s like, he wouldn’t have wanted to live like that. You know, he’s hardworking and independent and just wanted to. He wanted to, you know, live his life and he wanted, you know, he loved life. He He was so active and he loved the outdoors, and he loved to travel. And he just, he wouldn’t have wanted to be, you know, somebody charity case. And I’m sure that’s why he he didn’t come to me and ask for help, because I probably would have been like, you know what, it’s time to move home. How should I know he went? He didn’t want to do that

Nicole Smith-Holt 37:39

thing. And I’m asking this kind of to confirm it to is, this seems like it happened awfully fast. Right? It was only a month. It wasn’t as though he was stretching this out

Nicole Smith-Holt 37:48

even a full month right? To me that

Stacey Simms 37:51

that’s not a very long time at all, especially for someone to make a decision or figure something out. a month is really not long enough to think about Maybe I should quit my job and go on public assistance, or maybe I should be finding other options. I just want to reiterate it was only a month.

Nicole Smith-Holt 38:09

Yeah. So yeah, June 1, he had officially had no insurance and the phone died on June 27. But he lasted 27 days without my insurance. And, you know, a lot of people criticize me. I’ve, I’ve read a lot of really nasty comments on social media about how I should take responsibility, how I’m probably guilty for my son’s death. Because I didn’t I I didn’t give him the money. I honestly, I didn’t know he needed it. He didn’t come to me and asked me for help. I saw him seven days before he was found dead. And he looked perfectly healthy. It looks fine. He was stuck. He stopped at my home. We chatted, he paid me his car insurance and was heading to Wisconsin with some of his buddies to buy fireworks for the Fourth of July. He You know, he looked perfectly fine. And I asked him at that time, seven days before he was found dead. Is everything going, okay? How’s you know? How’s your blood sugar’s going? You know, have you been to the pharmacy yet? And he, I think, went to the pharmacy the very next day. But no, I never received that call for help. He didn’t even reach out to his girlfriend and ask for a help to pay for his insulin. And I think he probably would have went to her first. And he didn’t ask anybody on

Stacey Simms 39:48

the colon. I’m so sorry. I had to go through any of that criticism and those comments and you know, people can be awful, but people can also be very supportive. I would imagine. Yeah.

Nicole Smith-Holt 39:59

And let me the majority of

Stacey Simms 40:01

Well, that’s okay. It’s okay to acknowledge the people that are critical out there. Because we’ve seen that we’ve seen a lot with diabetes that well, people with diabetes need to just take better care of themselves if there’s so much misinformation out there. And I think that’s one of the big reasons why this doesn’t get enough attention. But let’s leave it at this. What are your hopes? What do you hope happens at the I asked about the protest, but as we share this story as people listen, what do you want them to take away from this?

Nicole Smith-Holt 40:30

You know, absolutely. I want people to know that type one diabetics did nothing to cause this diagnosis. It’s an autoimmune disease. It’s not because they eat McDonald’s or drink Coke or drink beer or smoke cigarettes. They did nothing at all the causes, they can’t do anything to prevent it And currently, there’s no cure for it. Ultimately, I would love to see this autoimmune disease cured, but in tell them what I would like to see Is our government stepped up and placed the lives of us ahead of profits, set laws in place for transparency, for against price gouging, allow for generic formulas to be created. Ultimately, we want insulin to be affordable and accessible for all I want people to know that there are advocacy groups out here that are advocating for those issues. Caitlyn international is a great organization and I work closely with them. You know, unfortunately, there are some advocacy groups out there that you know, take a lot of money from from Big Pharma. So I try to distance myself from those organizations because I would really, I want to see, you know, the advocacy of the grassroots advocacy groups that are working so hard and not taking any big pharma funding. You know, those are the people that have the best interest for diabetics at heart. And those are the people that I feel like are doing the most work right now for, for getting these laws in place

Stacey Simms 42:15

at this point, you know, looking back

Nicole Smith-Holt 42:20

anything from the year that stands out, you’ve done so many interviews and you’ve talked to a lot of people do you feel like we’re making progress?

Nicole Smith-Holt 42:28

I definitely feel like we’re making progress. From what I read online and what I hear from other people in the diabetic online community for

Nicole Smith-Holt 42:40

the past 1415 months, the the issue is just

Nicole Smith-Holt 42:44

really taken off. It’s really gotten a lot of publicity. And I think we’re really getting to reach a lot

Nicole Smith-Holt 42:54

more people with the ability to help us to make changes

Stacey Simms 43:00

Well, Nicole, thank you so much for sharing your story we will be linking up information to to international and to the protest. And we will be looking for you at that protest in front of Eli Lilly. And I hope you can come back on and share more of your story as time goes on. And, again, I’m so sorry about what happened and your family has our utmost. Your family has our utmost sympathy. But I cannot tell you how much I appreciate you getting out there and telling the story and educating people. It’s making such a big difference. Nicole, thank you so much.

Nicole Smith-Holt 43:30

Thank you.

Nicole Smith-Holt 43:37

You’re listening to diabetes connections with Stacey Sims.

Stacey Simms 43:42

It’s hard to know what to say after something like that. I’m indebted to her to share her story and continue to speak out for our community. And if if like me, you’re left with that feeling of what can I do? I would urge you to click on the links in the show notes head over to T one International. Find out more Not just about their in person protest, you know, maybe that’s not your thing. But if you want to be better educated, they have a lot of research they’ve already done. And there are many ways that you can get involved. Personally, I think this is going to be changed at the state level, state by state. We’ve already seen some legislation that is pushing for more transparency. And I think we’ll get more public opinion going that way. But it does have to change at the federal level as well. Let me know what you think. You can always email me Stacey at Diabetes connections.com, as I said, kind of tough to listen to, you know, very difficult story, but I’m glad that you did listen to it and I really appreciate you being here. I’m Stacey Simms, and I’ll see you back here on Tuesday for our regularly scheduled episodes.

Benny 44:53

Diabetes Connections is a production of Stacey Sims media. All rights reserved. All wrongs avenged

Transcribed by https://otter.ai