Erin M. Conroy

Bottineau

My son, age eleven (11), and my two (2) brothers all have Type 1 Diabetes. Type 1 Diabetes is not a lifestyle choice. Without regular doses of insulin, Type 1 Diabetes is always fatal. Often confused with Type 2 Diabetes, Type 1 Diabetes is not the result of being overweight, sedentary, or hormone dysregulation.

Type 1 Diabetes is not preventable and usually first afflicts its victims when they are juveniles. In order to live, children with Type 1 Diabetes must have access to insulin, glucose monitoring supplies, and other preventative supplies, such as insulin pumps, glucagon, needles, and alcohol wipes. In addition to lifesaving insulin, Type 1 Diabetics must monitor and calculate their food intake, get regular exercise, and visit a specialist every ninety (90) days. In North Dakota, the only pediatric endocrinologists practice in Fargo and conduct outreach sessions in Bismarck and Minot.

Through a series of intentionally confusing marketing strategies by an unholy trinity of big business pharmaceutical companies, insurance providers, and pharmacy benefit managers have consistently increased the price for individuals to survive with Type 1 Diabetes. In 1990, the average cost of insulin per vial was between $2 and $4. Today, the retail price on a vial of analog insulin is $400. On average, a Type 1 Diabetic requires between 3-4 vials of insulin a month. Even with insurance, our family’s cost of supplies, physician co-pays, and insulin this month was $2,917.34. Now, imagine bearing that cost month after month.

Why do pharmaceutical companies, insurance providers, and pharmacy benefit managers gouge the sufferers of a disease with a drug that has been patent-free since 1921? The answer is because they can. The lack of regulation in the drug market has exposed one of our most vulnerable populations, sick children, to the unchecked greed of big business. North Dakota legislators are not doing a thing about it – probably because most of them receive significant campaign donations from pharmaceutical companies and political action committees aligned with the pharmaceutical and insurance industry.

Based on data collected from twenty-two (22) states that have implemented state regulation around insulin and supply costs, we know that insulin and supply price capping bills have placed significant downward compression on insulin and supply costs.

Recently, the North Dakota legislature had the opportunity to consider one such bill. Although imperfect, the bill was a step in the right direction. In the committee hearing, Sen. Kristin Roers spent less than ten (10) minutes considering the bill before she declared it a “turd” and said they should not polish a turd.

In her remarks, Kristin flippantly remarked the bill would help a “slender margin of people.” Kristin was concerned the state of North Dakota would lose its $2.7 million dollar rebate from the pharmaceutical manufacturers and benefit providers if the bill passed. For clarification: that $2.7 million is money paid by children and adults overpaying for insulin. The state is profiting from sick people overpaying for their medications and Kristin Roers expects those sick people to keep subsidizing the state.

Roers expressed concern about the insignificant number of people the bill would help. She continues to be more than happy for the state to profit off those insignificant folks in the form of financial rebates.

During the committee meeting, neither Roers nor any of the other legislators in the committee quoted a single statistic, study, or other evidence when casting their do-not-pass vote. I am deeply disappointed that North Dakota legislators can so easily and quickly dismiss a group of people who are sick and mostly young.

After watching the committee hearing, I spent several hours researching. I compiled two (2) letters with data from various medical and public sources and sent the committee copies of data evidencing just how much it cost to be a Type 1 Diabetic. Even with insurance it costs around $20,000 out-of-pocket per year to be a person with Type 1 Diabetes. Statistics on the future earnings of a Type 1 Diabetic, show their earning capacity is about $21,000 less per year than a non-Type 1 Diabetic. Not a single no-voting committee member even opened the letters with the research.

This bill is not just about insulin or the cost of Type 1 Diabetes supplies. This is about holding our legislators accountable for their failure to make good policies. The North Dakota legislature is no longer a group of policymakers. Based on publicly available data, our current legislative body is not at all concerned with making evidence-based policy decisions. They appear to be mostly concerned with keeping their campaign contribution cycle running on all cylinders rather than making real efforts at effective policy making.

Please contact your legislator and encourage them to vote in favor of making this insulin capping bill a reality. This is not just about helping families with sick kids – it’s about making sure that healthcare and prescriptions remain affordable for all of us. Let us raise our voices in unison that legislators should be held accountable to their voting public.