Update on "Broken Vials"

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I have an update on Act 3 from our last episode, Walking on Broken Vials, so if you haven’t heard it yet I recommend listening to that before this episode.

Here’s a short recap: on April 13th, the bill LD 673, An Act to Create the Insulin Safety Net Program, was introduced in Maine. This was modeled off of the Alec Smith Insulin Affordability Act passed in Minnesota last year and would create emergency insulin and patient assistance programs that are more inclusive than the ones insulin makers voluntarily provide.

The morning LD 673 was introduced, the nonprofit Beyond Type 1 submitted written testimony on it. While they did not specifically say that they opposed the bill, their language made that position clear: “With new resources available, much of this legislation is rendered duplicative. LD 673 will create an administrative and financial burden to pharmacies, patients, and the state government.”

Beyond Type 1 was criticized on social media for this language clearly opposing the passage of LD 673. The American Diabetes Association, who receives money from the same pharmaceutical corporations as Beyond Type 1, submitted testimony clearly supporting the bill. Finally, after staying silent for 24 days, Beyond Type 1 sent a second letter saying, “We’re writing today to clarify and state unambiguously that Beyond Type 1 does support the passage of this legislation."

I called up Sarah Lukianov, who you’ll remember from our last episode testified in support of LD 673, to get her thoughts on this second letter.

Sarah: When we found out about it, it felt like a big relief. But it doesn't erase what was done. Why did it take so long to write that second letter? And we still don't really have that answer. And that sustained silence, just, you know, it spoke volumes. That should’ve been a quick turnaround, you know, if the issue was just clarifying something they claimed was “ambiguous” in their initial letter.

Craig: Were you surprised by the community support for LD 673?

Sarah: I was, I was really taken aback by it. As soon as word started to get out online, it was incredible to me to see people mentioning specifically LD 673, mentioning the Maine Insulin4All chapter and how quickly it grew and how quickly people were helping to educate each other.

You know, I saw people writing in comments on Instagram, for example, saying, “Oh, I don't know what's going on, can you direct me to a resource so I can learn about it?” And so it was great to see people asking questions, and helping each other to kind of get the information and to understand the larger issue of like, yeah, this is a bill trying to be passed in Maine, but it's not just that. Other states are currently trying to create a law similar to it and will in the future. So the issue here, not just with the law but Beyond Type 1’s reaction to it, that’s setting precedent for what's to come in other states.

Craig: Do you think Beyond Type 1 would have sent this second letter if it weren't for all that online support?

Sarah: No. [laughs] No, I wonder if they even thought we would notice it.

So I'm sure Beyond Type 1 was very surprised by that reaction, but I think it's a good reminder for not just them, but all organizations involved in diabetes, whether nonprofits or those who are manufacturing things that we depend on, it's a good reminder of how strong the community is and how much it supports each other.

It was really impressive to me, and I'm so, so grateful for how many people reached out and promoted the story of it, shared the information. It just was really just, it gave me a lot of faith in what we're able to achieve and what we will be able to achieve, you know, beyond state legislation.

Craig: A little after this bill was introduced in Maine, it was announced that they were looking to do the same thing in Colorado. And you mentioned that precedent. So do you think what happened with LD 673, what's happening with LD 673, do you think those ripples go beyond your border?

Sarah: Absolutely. And that's one of the things I'm most excited about. More people know about it. More people are aware this kind of legislation is trying to be passed. So I think those reverberations are huge.

But that's something again, because this community has shown like, how passionate It is about insulin access, and so many people learn so much about it over the last couple of months. It gives it really strong legs to stand on. So that's been really exciting, for me personally. It feels really good.

For the first time in a really, really long time, I feel like there's legitimate hope, you know, and I've had type one for 24 years, and it's gotten harder and harder as I've gotten older and things have gotten more expensive. And this is the first time I really feel hope.

Craig: So when we last talked you, you said that you saw Beyond Type 1’s first letter, that act, as unforgivable. After their second letter supporting it, do you forgive them or do you still feel like it's unforgivable?

Sarah: I don't forgive them. I, again, I want more accountability. I want to know why. But more than why I want to know what they're going to do now. And so that's really the way to right this wrong because I really do see it as a wrong. And again, it was especially personal for me as someone pretty involved in testifying for this bill, hearing other people talking to other people, it felt like a really personal hurt. You know, they did this for Maine, and what are they going to do for other states? What more can be done? You know, can Nick Jonas go and testify before Congress? That would be great. But, you know, I think they need to make some massive changes to their structure and their purpose to really earn back the trust and support of a lot of members of this community.

I, again, reached out to Beyond Type 1 for comment and, again, did not receive a response.