Colorado state representative introduces new legislation aimed at making insulin pricing more transparent
January 14, 2018
STEAMBOAT SPRINGS — State Rep. Dylan Roberts, D-Eagle, has introduced legislation that will require drug manufacturers to be more transparent about insulin pricing.
It's an issue that will likely impact Julie Tourigny's family in Steamboat Springs after her 10-year-old son Teddy Haupt was diagnosed with type 1 diabetes the just eight weeks ago.
"You don't know that your kid has diabetes on Wednesday, and then on Friday, you realize that he has diabetes and needs actual pharmaceutical maintenance," Tourigny said. “I go to the pharmacy the next day, and I have a $850 bill that I have to pay on the spot to get him what he needs to live in a safe way with a diagnosis of diabetes."
For years, she and her husband, both self-insured, had gotten by on a catastrophic health insurance plan. They had gone to the pharmacy to get antibiotics or medicine for pink eye — conditions that could be treated and cured relatively cheaply. But treating diabetes was different.
"There are no other options," Tourigny said.
That’s life for people dealing with type 1 diabetes in Colorado who, without multiple injections of insulin, would get sick and eventually die.
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Insulin is a hormone produced by the pancreas that allows your body to use sugar, or glucose, from carbohydrates in the food that you eat for energy or to store glucose for future use. For a person suffering from type 1 diabetes, their pancreas stops producing the hormone, and blood sugar levels quickly climb to dangerous levels.
"It doesn't make sense to people in general,” said Jane K. Dickinson, diabetes educator at UCHealth Yampa Valley Medial Center in Steamboat Springs. "In three more years, insulin will have been around for 100 years. Other drugs that have been around for a 100 years are really cheap, but insulin just keeps getting more and more expensive all the time."
Dickinson understands the frustration first hand. She has been dependent on insulin injections for the past 42 years.
"That's the most confusing part, and it’s very difficult for people to understand," Dickinson said, "Health insurance is a huge question mark, and what it’s going to be like in the future is a concern for diabetics. For people who don't have coverage, that is a huge problem."
Tourigny will pay close to $500 for five insulin pens. The family must also pay for needles and testing supplies on top of the cost of insulin.
Three major drug companies — Sanofi, Novo Nordisk and Eli Lilly — manufacture most of the insulin used in the U.S. The Journal of the American Medical Association reports that the average price of insulin is $250 per vial. Roberts said the cost of insulin has risen more than 1,200 percent in the last 20 years.
Dickinson said some of that increase can be tied to improvements, including the switch from animal-based insulins 30 year ago to newer insulins that are created in a laboratory and based on human insulin.
More recently, insulins called analogue, which are created in a laboratory, have been produced. They better duplicate the insulin found in the human body, and in most cases, they act more quickly, but in some cases, they are designed to work more slowly to control blood sugars over a longer period of time.
"I don't get it. Insulin has kind of been paired with the EpiPen problem in term of cost. There is a lot of suspicion around the cost for these life-saving drugs," Dickinson said. "People with type 1 diabetes cannot live without insulin, and so it makes you wonder if they (the pharmaceutical companies) have us where they want us."
Roberts, who grew up in Steamboat Springs, is hoping his legislation will bring transparency and offer those who are impacted by the rising costs of insulin a clear explanation as to why.
His younger brother Murphy was diagnosed with type 1 diabetes when he was 10 years old and lived with the disease for 12 years. In 2016, Murphy was hiking in southern Utah with his sister Cassady when he had a diabetic seizure, fell and hit his head. This caused a series of complications that led to his death at the age of 22.
Roberts said this issue is personal for him and he was inspired to bring this legislation forward in honor of his brother.
"What it will do immediately is show people, who have to purchase insulin simply to survive on a daily basis, an explanation as to why prices are increasing at the rate they are," Roberts said. "This isn’t going to automatically and immediately reduce the prices they pay, but at least they will have justification as to why they have to pay that price rather than just simply being held hostage to a price increase that they have to pay to survive.”
Roberts said he has gotten widespread support for his bill and he doesn't really see it as a partisan issue. However, he does expect some pushback from a strong pharmaceutical lobby in Colorado.
"Type 1 diabetes knows no political party — it knows no county boundaries, no state boundaries and no country boundaries,” Roberts said. "People across the globe are afflicted with type 1 diabetes, at not fault of their own. In order to survive, they need multiple doses of insulin every single day.:
He doesn't want to regulate prices but is hoping his bill will bring more understanding.
"Maybe there is a perfectly good reason why these companies need to raise their prices," he said, "I'm not trying to meddle with their business model or the way they conduct themselves. They obviously produce a life-saving product, but if there is a reason why they need to raise their prices, that's fine — just tell the consumer. I think the consumer has the right to know why they are charging so much."