Getting Louder

Note: Beta Cell is an audio podcast and includes emotion that is not reflected in text. Transcripts are generated by human transcribers and may contain errors. Please check the corresponding audio before quoting.

[music]

Craig: This is Beta Cell. A show about people living with Type 1 diabetes. I’m Craig Stubing.

[music]

Sierra: So, if you haven't seen already, I resigned from—I haven't resigned yet as we're recording this podcast, but by the time you're hearing it, I will have resigned from the Leadership Committee from Beyond Type 1.

Craig: Okay, okay, we’re getting a little bit ahead of ourselves.

Sierra and I started texting a few weeks ago around the time Sam Talbot, who was one of the four co-founders of Beyond Type 1, was dismissed from their board. If you missed that ridiculous story, I go in great detail about what happened on our website, betacellpodcast.com, and on our social media—which, if you’re not following us yet, this would be a good time to do that.

But the short version is that when Beyond Type 1 was founded, they said that they would not take money from the big three insulin manufacturers: Eli Lilly, Novo Nordisk, and Sanofi, so that they could remain objective when talking about the insulin pricing crisis going on in the U.S., where 1 in 4 people with type 1 diabetes are rationing it because of the cost. About a year and a half ago, that moral compass shifted and they accepted money from Eli Lilly and, earlier this year, people started raising the issue to Beyond Type 1, like they did with Sam Talbot.

So Sierra, as I’ve already spoiled, is one of those people who are not happy about them taking money from pharma. But to understand how she got to this point, we have to rewind a bit.

[rewind sound]

Craig: Sierra grew up in the small town of Twin Falls, Idaho. If you haven’t heard of it, I’m not surprised—I hadn’t either. It’s at the very south of the state and, as of the 2010 census, only had 44,000 residents. Like I said, small.

She was homeschooled until her 8th grade and when she was finally adjusting to public school, her family moved to South America for a year.

Sierra: So then I really started school, I feel like, in 10th grade and so I had three years to learn how to be normal. And I was basically just homeschooled awkward kid which, if you know me well, makes a lot of sense.

Craig: When she was 18, Sierra moved out of her parents house. But halfway through her senior year of high school, she started drinking a lot of water.

Sierra: And I had pulled the coffee table into my bedroom, and I had filled up all the containers that can hold water including mixing bowls and blenders because I was just so thirsty. It was like, I kind of thought I was being an overachiever, I was just drinking way more water than was necessary, but I was just being healthy and better than everybody.

But I was snowboarding and it's just like this little tiny place in Idaho that has a lodge at the bottom. And I would get on the chairlift, go up to the top, pee behind a tree, have like multiple empty water bottles in my hands and just rush on the easiest run, so that I could fill up my water bottles and go to the bathroom again. And I called my dad on the chairlift and was like, “Dad, I need to go to rehab. I'm an aquaholic. And it's like starting to affect my life negatively and I'm admitting I have a problem. Please help me. I’m so addicted to water, it's not even funny.” And he starts laughing, of course.

And I was like, “No, Dad, I Googled it, it's a thing.” Because apparently other diabetics that are undiagnosed come to Yahoo Answers and asked if they're an aquaholic too.

And he was like, “No, you're definitely probably diabetic because it runs in our family.” And I, not knowing anything about type 1 diabetes, was like, “Dad, no, I have lost like 40 pounds. There's no way I'm diabetic.” And when he heard that I had lost that much weight he was like, “Oh, you definitely have type 1 diabetes, come home and we're going to measure your blood sugar.” So yeah, that's my diagnosis story.

Craig: Was that scary?

Sierra: it was like, “Oh, my dad's a doctor. He's a magical wizard that can fix absolutely any ailment I've ever had.” And it's just kind of like a dad rule in general, whether they're a doctor or not: they can fix everything.

And so I was like, okay, so I have diabetes like, what does that mean? Take away then. And I remember when my dad’s like, “No, you can't take it away. There's no cure.” I was like, “Okay, but like, actually what's the cure?” And when it's set in that there's nothing my dad could do for me and I was gonna have to do shots or have a pump every day, like, forever basically. That was when the fear started setting in. Yeah.

Craig: Did that, I don’t know, isolate you even more?

Sierra: Yeah, especially in like a rural community, because I think no one understands me like emotionally or what diabetes is physically. So that's kind of when I got plugged into the diabetes online community, the DOC, because that was the only like access I had to other diabetics.

Craig: What did that feel like?

Sierra: Yeah, I think it was my first kind of taste of: there are other people out here like this. I'm not like the only person in the world who looks like this or feels like this or like has to deal with this. And that's like a really comforting feeling. I don't know. I don't really know how to describe it, but I'm sure you and everyone else listening can kind of relate to that, like, feeling of being completely alone. And then like the first time you had contact with another.

Craig: As much as Sierra tried to hide her type 1 from her classmates, word spread through her small school, eventually getting to a student’s mom who was Miss Idaho in 1993. She found Sierra one day after classes.

Sierra: And she told me about Miss America in 1999, Nicole Johnson, who has diabetes and wears an insulin pump. And at this point, I had been like, “Hell no, I'm not gonna wear an insulin pump or any kind of medical device.” I was maybe thinking about a CGM, because like, I hated checking my blood sugar so much, but it was still like a very scary concept for me. So I look up Nicole Johnson. And I see this beautiful Miss America.

And in some of the pictures on Google she has an insulin pump. And I think it was like that growing up moment, I think that we all have like, hopefully have at one point, that like everything that you cared about as a kid—like fitting in and not being weird and not sticking out and like things you were self conscious about—like doesn't really matter in the big scheme of things. And so that was like my moment of like, coming into that part of adulthood as like, oh the kids that are making fun of me for stuff, don't know what they're talking about and their opinions don't matter. Including, like, I can be beautiful with an insulin pump on. And I think that transformation for me in that moment for me was so important. That was really what inspired me to be like, okay, I want to go to Miss America and wear my insulin pump someday so that I can do for someone what Nicole Johnson just did for me.

Craig: And just like that, eight months after being diagnosed, Sierra was competing in her first beauty pageant.

Sierra: And I lost that. And then I won a smaller pageant, which qualified me to go to Miss Idaho. Then when I got to miss Idaho, they have everyone compete and then they read off the names of the top 10 finalists and I am left standing in the back with everyone else who got eliminated immediately. So that's how pageants started out.

Craig: Sierra didn’t give up. The next year she was back at the Miss Idaho competition. But even though she started doing pageants in order to wear her insulin pump on stage, just like Nicole Johnson did, she was still nervous.

Sierra: This girl backstage, she's like 12-13, I see you're staring at me. And I usually at this point, I'm like, pretty comfortable with my insulin pump, but I'm about to, I'm really nervous to wear it on stage. And she's staring at me and staring at me and I was like, please stop looking. I know what you're looking at. Like, this is not the time, please. And she's like, “What is that?” And I didn't even say anything to her. I was so upset.

So I went back in the dressing room and like took off my insulin pump and was like that was so stupid. Like why did you think that wearing it in Idaho was a good idea. Like at Miss America you can explain it on media interviews. There's gonna be tons of little type 1 girls watching it on TV. But at Miss Idaho, no one's gonna understand what you're trying to do. And then I turn around and the little girl had followed me into the dressing room and was like, “Wait, wait, do you have type 1 diabetes? Is that your insulin pump? I have type one diabetes. And my mom sent me backstage because she heard that there was a contestant competing with diabetes, and I wanted to meet you.”

And so that changed everything obviously, complete 180. Like, okay, even if I don't win, there is a little girl in the audience and it ended up that she didn't wear an insulin pump because she was self conscious about it. So I was like, okay, maybe I'm not going to go to Miss America ever. But there's this little girl that I can be Nicole Johnson for. And that's like, all that matters is making a difference in one person's life.

Craig: Tell me what it felt like to walk down the stage with the pump on your swimsuit?

Sierra: Honestly, the most worrying thing is that when you have it clipped to your swimsuit, it kind of bounces. And a lot of modeling is like knowing exactly where your arms are and exactly what your legs are doing and where your chin should be. Knowing where your body is. And that includes this extra organ, that's my frickin’ external pancreas, and not flinging it off my bikini or letting it pull my bikini bottoms down. I think that was my main worry: it was less being self conscious about it and more like don't throw it across the stage.

Craig: Her practice paid off.

Sierra: That was the year that I took home the crown. So two years after I was diagnosed, two and a half years.

Craig: After she won, Sierra posted the picture of herself on stage in her bikini and insulin pump and started the #ShowMeYourPump campaign.

Sierra: So I really wanted to show them that, I know, the world's making you feel like you're weird and like, maybe not pretty because of this, but that's a lie. And you are valuable and you are beautiful. Not not in spite of the insulin pump, but like even because of it. Because I think I went through a phase in my diabetes where I was like, “Hell no, I'm not going to wear an insulin pump,” and then got to a place where I was like, “Okay, like, I mean, it makes my diabetes management easier so I guess I'll wear it.” And then, at this point, I'm like, diabetes is such a big job and takes so much hard work and perseverance that my insulin pump is like a symbol to represent all the hard work that I do to make up for my pancreas and that's something to be proud of. And something that I think makes me more beautiful rather than less than or equal to what I would look like without it.

Craig: And I remember I think it was Halloween that next year.

Sierra: They all dressed up as me! And it was so, I love, extra love, like the girls who weren't diabetic and they'd borrow their sister’s old insulin pump or something. It was like not only was it okay to have an insulin pump, It was like yes, insulin pumps are so cool.

Craig: Sierra had become a household name and started getting invited to speak at conferences all over the country.

Sierra: The nonprofit would pay for my flights and fly me out and I wouldn't usually get a speaking fee or, if I did, it'd be really small. But then there were a lot of events where like, “We want you to come out,” but like they wanted me to find a way to get there and like as a college kid that wasn't gonna happen. But then Tandem got in touch with me, obviously, and they pay for my flights and my hotel and my speaking fee and then the nonprofit does not have to pay for it.

Craig: But as much as Sierra loved meeting new people and making a difference, something always felt off.

Sierra: So I'm confused when I'm going to these conferences and I'm seeing Eli Lilly tables and Novo tables advertising. And obviously I know through my relationship with Tandem that in order to be at this conference, you have to be contributing money to it. Why are these companies like donating to this conference when we are trying—I thought we were trying to put them out of business. Are we not trying to put them out of business? So this is my like little baby 20 year old mind being like this is just like not adding up.

Craig: Around this time, Sierra got in touch with a new nonprofit that was just starting up: Beyond Type 1.

Sierra: So I thought that Beyond Type 1 was this amazing organization. They weren't taking insulin money. They were just really hip and innovative and fresh and energetic. And I felt like I could go to them with an idea and they would launch it. Like I think we did, two years after I went to Miss America, Miss New Hampshire had an insulin pump. And so I was like, oh, it'd be so cool if we took a little girl with diabetes out there to like, watch Miss America with former Miss Idaho with her insulin pump and we can watch Miss New Hampshire compete. And so they made that happen. And I went, we walked on the red carpet next to Sierra and Gabby Douglas and Chris Harrison. It was super cool.

Craig: And that wasn’t the only cool thing Sierra was able to do with Beyond Type 1.

Sierra: It is on my wall and my childhood bedroom is like this big list of things I wanted to cross off my bucket list and at the top is ride my bike across the country. And it's been there my whole childhood because my dad rode his bike across the country when he was 16.

And so I kind of gave up on that dream after diagnosis, but Beyond Type 1—

I got a call from them in late 2016 saying that, “Hey, this hasn't been announced yet, but we're putting together a bike team. And we were wondering if we make the route go through Boise if you could throw a big event/fundraiser for them and maybe help find housing for them that they can stay in while they're passing through Boise and maybe other places in Idaho.” And I was like, “Okay, I'm so sorry, I cannot throw those events for you in Boise because I need to be on that team.”

Craig: Over the course of 10 weeks and 4200 miles, Sierra was finally able to accomplish her childhood dream of biking across the country.

The journey of the 20 members of Bike Beyond were documented in a feature length film and you can hear interviews with other members of the team, Cassidy, Jordan, and Abbey, here on Beta Cell too. Needless to say, Sierra was a big supporter of Beyond Type 1.

Sierra: My website, on my Instagram bio, and my Twitter bio have been beyondtype1.org or a link to the Bike Beyond documentary for like ever.

Craig: But earlier this year, Sierra started to hear rumors about Beyond Type 1.

Sierra: I started getting people like tweeting at me or sliding into my Instagram DMs about like, “why are you supporting Beyond Type 1 taking money from insulin manufacturers?” And I was like, Beyond Type 1 would never do that. Like classic denial defense.

Craig: So then did you decide to dig into it?

Sierra: So in I think like early July, late June, we were going to have a Leadership Council meeting. And I responded to the invite to the meeting saying, “Hey, before the meeting, I would like to see these financial documents and your conflict of interest statements please.” Because you have to request them and they’re not on the website.

And they sent them back and, “Here are those documents that you requested, but I'm assuming that you're concerned about stuff that is not disclosed on these documents. So if you have any other questions like email back and we can hop on a Zoom call.” blah, blah, blah.

And I hop on a zoom call with them. They say “Yes, we are taking insulin money. Here's our reasons why.” I don't buy those reasons and I tell them to like, “Please stop taking insulin money.” And they don't directly say, “No,” but I also can tell that's not an option they're considering. And so instead, every time I say, “Okay, please consider not taking insulin money,” they respond with, “Oh, we will be more transparent about it, don't worry.”

And I find out that they've been taking insulin money for a year and a half before I found out about it. And I found out about it, not from them, but from the diabetes community who was like being more critical of the Beyond Type 1 than I was able to because I was like, biased and love them.

I was gonna say honestly, going into that meeting, I had a lot of hope, I think. I think I'm first of all, I'm close friends with everyone that was on the Zoom call. I don't have that kind of relationship with JDRF or ADA and they're so big and bureaucratic that I don't think they'd ever listened to me or have that conversation. But with Beyond Type 1, it's a small organization that I think... I don't know. I had a lot of high expectations and a lot of hope in them.

Craig: But they didn't listen.

Sierra: I mean, I definitely got to express my concerns and they said that they understood and that they know insulin money is a gray area but they like felt that they could do more good in the world by like accepting that money which, like honestly, and I kind of feel twisted, torn about it because like a lot of the reasons why I partner with Tandem is because like I feel like they helped me reach a lot of people that I wouldn't be able to reach without that partnership. But a lot of their excuses or reasoning, I was like, okay, I just I'm not buying it.

Craig: Specifically for a nonprofit, why is the money bad?

Sierra: Okay, so back in, what was it like April? They rolled out the Lilly coupon. Which said if you have this coupon, you only have to pay $35 a month for your insulin. And this is for insured people and not insured people, just everyone. Anyone who's insulin dependent and has a Lilly prescription can buy her insulin for $35 a month.

And so I was like, “Oh heck yes. This is awesome. I'm so glad I learned about this from Beyond Type 1.” And it was all over Beyond Type 1’s stuff. I reshared it. Everyone reshared. Super exciting. I want everyone to know that they can get their insulin for $35 a month. Heck yes. So I made a doctor's appointment, paid a copay to go in and get my prescription switched from Novolog to Humalog, okay? I'm so mad.

And then I call Lilly. I get the coupon that'll be good for this insulin, but not the insulin I was previously prescribed. And I go to use it, and it does not work.

I don't know what the issue was, but I did not get my insulin at all, let alone for $35 a month. So then, what really made me mad was on the Zoom call that I had with Beyond Type 1, they were trying to convince me how taking Lilly money hadn't changed how they messaged things. And when they were telling me that, they accidentally let slip—which I was not aware of before they let it slip—that Novo Nordisk also had a coupon that was like, I don't know, I don't remember the details, but I think it was you get three months of insulin for free.

So it was 1. Better than the Lilly coupon 2. I didn't freaking hear about it because I was trusting this nonprofit to have my best interest in mind and tell me all the information I needed to know to make the best decision for myself. And if I'd known about that Novo Nordisk coupon I could have gotten three months of insulin for free instead of going to the doctor, paying for copay, going through all these loopholes to get my insulin prescriptions switched over to a Lilly product to make Eli Lilly more money and then have it not work on me. So that is why taking insulin money can make you a less effective nonprofit.

Craig: What did you end up doing in the pharmacy?

Sierra: I haven’t refilled my insulin. I am on the edge of rationing right now because I have not refilled my insulin since I went in to get that. And I won't go into my finance situation right now, but I think I'm going to be able to pick it up early next week. But I'm on my last little vial and I was at my boyfriend's house the other day and I have like a little drawer of stuff that I keep over there. And I found a half vial of insulin in it from forever ago that I just forgotten was there. And I almost started crying because it's like $200 there, at least, of insulin that I really, really need right now. Thank God. So I popped it in the fridge and hopefully it's not expired.

Craig: Now we're at the point where people who can't afford insulin might feel like they're not being represented by the organizations who are supposed to represent them.

Sierra: Yeah. That's honestly kind of a personal transformation as well that I've gone through is that, as a teenager, I come from a family that's well off financially. My biggest problem with diabetes was just body image issues. It was a huge deal in my little teenage head at the time. Especially, I was sheltered from, like my parents purposely didn't want me to know how much my diabetes supplies were costing because they didn’t want me to feel like a burden. And I just had to focus on feeling comfortable in my own body.

But now, growing up, gotten on my insurance. and my parents still have to help me out. So I'm still very privileged in that, but the prices are much more in my face now. And I'm struggling to get access to Control IQ, Dexcom, and afford my insulin every month. And the biggest problem now is finances and those organizations aren't helping me. Or talking about it even for the most part.

Craig: What are you going to do about it?

Sierra: So, if you haven't seen already, I resigned from—I haven't resigned yet as we're recording this podcast, but by the time you're hearing it, I will have resigned from the Leadership Committee from Beyond Type 1.

And I expressed, basically what I just said, is that I asked you to stop taking insulin money and your response to that was we'll be more transparent about taking insulin money and I have seen how that's affected the way you advocate and I need to go do my own thing.

Yeah, I really don't want this podcast to come off as like a FU diabetes organizations because like they are—or at least were, and probably still are filling a big need in the diabetes community. At the very least, I have met so many important friends through JDRF conferences and ADA events and through Beyond Type 1 and through Bike Beyond. And that alone, like the lessening the isolation that I feel has been a game changer.

I guess my point is I'm not trying to say, “FU, you guys suck, you have never done any good ever.” I'm saying, “Organizations, you guys are important. You guys are powerful. I'm trying to keep you accountable and I'm urging and begging you to stop taking insulin money because it's compromising your mission and your number one mission should be to advocate for me even if it means doing that with a little less money and turning down insulin money. I think your advocacy can be more effective and more genuine if you're avoiding pharma money.

So again, back to general listeners, not organizations: take a look at your organization and pay closer attention to how are those sponsors affecting certain decisions. And are they funding cures that are like “cures” and going to like let us be insulin independent someday or are they funding “cures” that are just like better tech and gonna make us buy expensive machines and really expensive insulin forever and ever and ever?

So pay attention to those things and if you don't like what you see tell them that. And be loud about it. Because they're not making changes right now and so apparently we need to be louder.

[music]

Craig: Beta Cell is produced, recorded, and edited by me, Craig Stubing. Our theme music is by Purple Glitter.

If you love listening to Beta Cell and want to support us, you can join the Beta Cell fan club on Patreon. For just a few dollars a month, you’ll get early access to every podcast episode, bonus clips—like Sierra giving me her #1 beauty tip, not that I need it—a behind-the-scenes look at the making of the show, and monthly video hangouts with me and other Fan Club members. Visit betacellpodcast.com for more info.

I’m Craig Stubing, and this is Beta Cell.

[music]