AUGUSTA – Speaker Sara Gideon today presented a LD 2096 – “An Act To Save Lives by Capping the Out-of-pocket Cost of Certain Medications” before the Legislature’s Committee on Health Coverage, Insurance and Financial Services.

Speaker Gideon’s submitted written testimony is below.

Senator Sanborn, Representative Tepler and distinguished members of the Joint Standing Committee on Health Care Insurance and Financial Services, thank you for welcoming me today.  I am Sara Gideon, from Freeport and the Speaker of the House of Representatives. I’m here today to speak in favor of LD 2096 – An Act To Save Lives by Capping the Out-of-pocket Cost of Certain Medications.

As submitted, this bill caps the amount patients in the individual and small group markets pay for life-saving insulin at $100. 

It is not an exaggeration to say that access to insulin is a matter of life or death. Type 1 diabetes, previously called insulin-dependent or juvenile diabetes, is usually diagnosed in children, teens, and young adults, but it can develop at any age. If you have type 1 diabetes, your pancreas isn’t making insulin or is making very little. And without that insulin, blood sugar can’t get into cells and builds up in the bloodstream. There is no cure and it is a lifelong condition. 

For close to 100 years, insulin has made a diagnosis of Type 1 diabetes a condition that could be managed, instead of a death sentence. In fact in 1923, the doctor who discovered this medication sold his patent for one dollar, saying “Insulin does not belong to me, it belongs to the world.” This gift allowed insulin to be mass-produced, making it widely available to the public for the treatment of diabetes. 

While there have been many advancements in the creation and delivery of insulin since then — from regular human insulin identical to what the body produces on its own, to ultra-rapid and ultra-long acting varieties — the fact remains that this drug is literally a life saver.

But recently, it’s become something else: a source of steady profit for the pharmaceutical companies that produce it. 

The average cost of insulin for treating type 1 diabetes in the United States nearly doubled over a five-year period, rising from $2,864 to $5,705 per person, per year. 

These dramatic increases have put many diabetics in the unfortunate position of making dangerous compromises. They either forego the medication or they ration their prescribed dose to stretch it until they can afford the next prescription. 

Approximately 142,000 Mainers are living with diabetes today. Of that number, about 5% have Type 1, where they require insulin to live. Of the remaining 95%, some do not need to take medications for their diabetes, some take medications, but not insulin, and some need to take insulin. 

For those of you who don’t have someone close to you who lives with diabetes – which would surprise me given the numbers listed above – know that, in the background of everything they do, there are underlying questions and an ongoing mathematical equation. Diabetics are constantly asking themselves, how many carbohydrates is this? What’s my blood sugar? How many units should I take? Is this going to balance? If I work out, how much insulin should I take? Should I have dessert? What are my A1Cs? Should I take the long-acting or the short? Every time they walk out the door, they need to remember a kit of supplies. Not to mention the endless finger pricks it takes to measure one’s sugar, and the test strips or the syringes that are used to deliver the medicine. 

As I mentioned, this diagnosis usually comes for children, teens, and young adults, so it is either kids managing the weight of these questions, or more often than not, their parents who are carrying this mental load. Parents who are hyper-alert to their children’s activity levels, diets and moods, who are balancing specialists visits and aware of the dire consequences that come with mismanagement. 

The absolute last question that should be on their mind is “Can I afford this insulin?” 

Despite a widespread recognition of this crisis, there has been no meaningful federal action to crack down on the runaway costs of insulin, and as a result, states across the country are being forced to take the lead. This legislation proposes capping out-of-pocket insurance expenses for insulin at $100 for a 30-day supply, regardless of the number, type or amount of insulin drugs a patient uses. It is a simple bill, however, I defer to the judgement and experience of this committee as to whether that cap should be lowered, if an expansion of the types of medicine that are covered is warranted, and whether or not the additional supplies necessary for diabetes management (for example test strips and glucometers) should be added. 

This bill is not a panacea for the problem of insulin price gouging. Because as we are all aware, we can only regulate certain types of insurance plans at the state level. The ultimate solution we need involves the federal government finally taking action to drive down costs nationally. But I will say that when we have the ability to do some good for the people in our state, we must. And, as the members of this committee know,  these types of changes in state regulation can inspire structural changes across all markets. It is exactly why this bill has broad bipartisan support and 119 cosponsors.

I am sure there are others that will follow me today that can dive into further details, but I’d be pleased to answer any questions you may have. I’m confident the committee will consider these matters carefully and I respectfully ask that you support LD 2096 and swiftly move its passage.