When he introduced legislation earlier this month calling for transparency in insulin pricing in the state of Colorado, Rep. Dylan Roberts had his younger brother Murphy in mind.

Murphy Roberts was diagnosed with type 1 at age 10 more than a decade ago, but unfortunately a low blood sugar seizure a couple years ago led to Murphy’s death. He was a 22-year-old junior in college at the time, home from Vermont for summer break and on a hiking trip with his sister.

It was in Murphy’s memory that Dylan – now Rep. Roberts, chosen in October 2017 to fill a vacancy in the Colorado House of Representatives – made his first legislation one that his brother would be proud of: calling for more transparency in insulin pricing, building on efforts in other states that have been popping up across the nation. The bill he’s championing is HB18-1009 (aka the Diabetes Drug Pricing Transparency Act).

Inspiration largely came from Nevada’s first-in-the-nation law, passed by that state’s General Assembly and signed by the state governor in June 2017. There’s still a lot unknown about how that law will roll out; it’s a work in progress even as a lawsuit challenges the basis of its call for transparency.

This Colorado effort was the first of 2018 aimed at insulin pricing transparency at the state level. We’ve seen news about a Mississippi lawmaker following suit with a similar bill, and word is other states will follow too – with drug pricing being a hot topic across the country.

We had a chat by phone with Rep. Roberts just days before his bill was officially introduced on Jan. 10, and here’s what he shared with us about his own personal story and his thoughts on insulin pricing:

DM) First off, would you mind sharing some more about your brother Murphy’s unfortunate diabetes story?

DR) My little brother Murphy was diagnosed with type 1 diabetes in 2004, when he was 10 years old. He’s the youngest of four kids, and was five years younger than I am. As you know, when one sibling gets diagnosed, it becomes a family disease. I was a sophomore in high school at the time and it was impressed upon all of us very quickly what living with T1D was like. It was rough at the start. He had several seizures, in just learning to live with it and being on insulin. He was on injections for the first two years or so, and then did get a pump.

I was with him quite a bit, keeping an eye on him and helping to manage the diabetes side while also letting him be a young man growing up and doing his own thing. He was very active as we all were, being in a small Colorado mountain town with skiing and hiking and all those athletic things. He was really quite the guy.

Two years ago, he was a junior at Middlebury College in Vermont and was home for the summer before his senior year. He and my sister went on a hiking trip in southern Utah, on a small hike – nothing extreme – to just go look at the sunset. A little bit outside the campground, he had a seizure from a low blood sugar… he hit his head and died the next day because of complications from the fall. It was August 2016, and it’s been about a year and a half now.

So sorry to hear. How did that work into the insulin pricing legislation you’ve now introduced as a freshman state lawmaker?

As somebody who had a sibling with diabetes, I was peripherally aware of how important insulin is and the financial challenges that can come from being insulin-dependent. We were from a family who were fortunate enough to have good health insurance, so that was of course not a gigantic out-of-pocket expense for Murphy or my family. But it made me think of all the other people who aren’t so fortunate, and can’t afford their insulin. It’s always crazy wondering what people in Third World countries do, as diabetes knows no country or economic lines. I was always aware of how challenging that can be, to be dependent on a medication that is so expensive but you need it to survive. If you don’t live with diabetes or have a family member with diabetes, you might not necessarily know this is happening to the extent that it is.

I then saw what happened in Nevada last year, with the legislation that was passed and went into law in June 2017. I wasn’t in elected office at the time, but was paying attention. When it passed last summer, I thought that was a great start public policy-wise and when I got my seat in October and prepared for the legislative session starting in January, I thought it should be something to do here in Colorado.

Why is more transparency needed?

Think of going to the grocery store to buy a bag of apples. You can go ask the grower what it costs to bag those apples, and to grow them, and compare that to the price you pay at the grocery store – that’s not a trade secret and it’s what we’re asking for here on insulin pricing.

You’re selling a product to a customer, through a pharmacy, and somehow the prices of insulin are going up exponentially. Insulin is not a direct-to-customer sale for the most part and there’s a lot that goes into this, but we’re just asking for more transparency on where these cost increases are coming from. Is it from the manufacturers? From the Pharmacy Benefit Managers? From the insurers? Or a combination of the three? I can be blunt about this: if you’re screwing over the consumer through the contracts you have, you should explain why you’re doing that. If you have nothing to hide, then you have nothing to fear from this bill.

Gotcha. And how exactly would your bill create ‘transparency’?

Our state board of health will be responsible for implementing this act. The summary is that drug manufacturers and PBMs (Pharmacy Benefit Manufacturers) will be required to submit their annual reports to the state board regarding any diabetes meds that are subject to price increases of certain percentages. The state board will then analyze the information and publish a report. The board can impose penalties on drug manufacturers or PBMs who don’t comply with these reporting requirements.

Have you also addressed the issue of non-profits taking contributions from Pharma, as Nevada did?

Yes, I do have a similar provision in my bill that calls for disclosure from non-profit organizations that receive money from the pharmaceutical, insurance, and PBM industries. That was on the advice of people in Nevada as well national advocates who said that’s an important piece to include.

But I do agree that we still don’t know how all of this will actually work out, with the Nevada lawsuit and how the regulations behind this law are being handled in that state. There’s a lot still TBD.

When did you introduce your bill?

I submitted it in the first week of January, and it was formally introduced on our first day of session. Every lawmaker can have one bill on the first day, and this was mine. The introduction of the bill was pretty unceremonious. The way they do it in Colorado is pretty procedural with no public announcement. The first committee hearing is when I will actually get to formally present the bill. Still don’t have that date yet.

Were you familiar with the #insulin4all movement when drafting this legislation?

No, I didn’t know about that community before taking this on, but I do now, and I’m in full support of what those individuals are trying to do. That just proves how important this issue is for so many people. I’ve been pleasantly surprised by the outreach and support I’ve received from the Diabetes Community, across the country on social media and following up with emails and phone calls.

Many here in Colorado have contacted me to say they’d come to the Capitol to testify and support this here in their home-state. I think this is how we’re going to open the veils, shine some light on what’s going on with these drug price increases. Manufacturers and PBMs have been able to sort of sneak by as there wasn’t a community able to draw attention to this across the country. But that’s not the case anymore, and as someone who cares about transparency I think that’s a great thing.

You have a background as an attorney, too, correct?

Yes — with any bill I’ll write myself, sponsor or vote on, being an attorney will help. We technically have the title of “lawmaker,” so having an understanding of the law definitely helps. The Nevada law is currently in the midst of a lawsuit from the manufacturers (claiming that required disclosures will cripple their businesses), so there are some aspects that I’ve added into my bill that were not included in the Nevada bill to try and prevent the same type of litigation here in Colorado.

Are you worried about a potential lawsuit against your bill?

No, I wouldn’t say I’m worried, because I’m expecting it. They have the money and the resources to file one, whether the lawsuit has merit or not. But that’s not my concern right now. My focus and priority is trying to get this to the governor’s desk here in Colorado, and not what happens after that. I’m also not holding my breath and expecting they’ll just roll over and accept it.

What are the provisions you’ve written into your legislation to avoid a lawsuit?

From my understanding, the basis of the Nevada lawsuit is that the manufacturers are saying they can’t disclose this information because it’s proprietary, trade secrets that are part of their internal R&D process. So I’ve added in a clause that specifies none of this information being asked for is exempt from the trade secrets shield in Colorado — that the things we’re asking the manufacturers and PBMs to report are not within that trade secrets umbrella. We’re not asking them to disclose how they make the insulin. We are asking for the numbers behind the cost increases. Telling us the total amount of profit you’re making on a sale, or paying to someone for a rebate, is not a trade secret.

What real, practical impact do you think your legislation will have on insulin pricing?

I’m very honest with people that this is a first step. This is not a bill that will suddenly reduce insulin prices, in Colorado or elsewhere. But we can’t do everything through legislation that we want all at once, we have to take it by incremental steps. Transparency is the first step, but it’s not the last step.

Have you had conversations with other states’ lawmakers about this issue?

I’ve been talking to Sen. Yvanna Cancela in Nevada who has been a great help in drafting this legislation to make it stronger or helping to get it through the legislature. There’s been outreach from my colleagues here in Colorado on both sides of the aisle, and that’s encouraging. But I’ve been so focused on this bill and getting ready for the legislature’s start, that I haven’t had the chance to connect with anyone else outside the state. I’d welcome that. If we could get this type of bill going in all 50 states, that’d be a great thing.

What would you need from the Diabetes Community?

I think the continuing support in social media is important. Maybe trying to figure out specific legislators in Colorado who might be interested in this, as we move this through the committee process and work to get it ratified here. I’ll be making sure the legislation status is well-updated on my own social media accounts, for those who want to follow along. I’d encourage people to do so and to contact me directly, in coordinating support near and afar – especially if you’re in Colorado and can contact be a part of this.

We’re very sorry to hear about Murphy, but we thank you Dylan for sharing your personal story and for taking up this important cause!

UPDATE: This bill made it through the Colorado House, but died in committee on a party line vote and didn’t make it to the full Senate for a vote before the session ended in May 2018.