HILLSBORO, N.D. — Twelve-year-old Nina Kristzberger is an active sixth grader who swims and plays softball, basketball and volleyball. She wants to be known simply as good-natured "Nina," rather than a girl living with a lifelong disease — Type 1 diabetes.

Nina was diagnosed at 7 years old with Type 1 diabetes, an autoimmune disease where her pancreas does not create insulin — a hormone the body uses to allow blood sugar to be made into energy. Without insulin, people can experience high blood sugar and a plethora of symptoms that often come with diabetes, including nausea, vomiting, weight loss, stomach pains and others.

In January 2019, Angela Kristzberger, Nina's mother, refilled her daughter's 30-day insulin prescription and paid $1,200 at the pharmacy. After her family met their $5,000 deductible, she began to pay $120 in coinsurance each time she refilled the prescription. Kristzberger said she now pays a $2,500 monthly premium for her family of six, and even though her family is doing OK financially, she worries for the many families who struggle to pay for the expensive, life-saving drug.

The Kristzbergers run a modest sugar beet and small grains farm in Hillsboro, N.D., about 40 minutes north of Fargo. Since they are self-employed, they pay 100% of their health insurance needs.

"My concern is for everybody that isn't able to afford insulin," Kristzberger said. "It should never come down to, 'Should I pay rent?' 'Am I going to make a car payment?' 'Should I buy insulin?' The first choice has to be insulin because it's literally life or death."

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Sen. Dick Dever, R-Bismarck, filed a bill to the North Dakota Legislature on Friday, Jan. 8, that will cap the amount a person with a North Dakota health insurance plan pays in either copay or coinsurance to at most $25 when picking up the medication at a pharmacy or distributor. The health insurance company would shoulder the rest of the cost.

Similarly, the proposed bill also states a policy may not charge a person more than $25 for medical supplies related to administering insulin and dosing it, such as glucose meters, glucose test strips and blood ketone meters, among other supplies.

The bill would break ground for North Dakota, as only 13 states have passed an insulin capping bill up to this point, according to Christine Fallabel, director of state government affairs at the American Diabetes Association. Approximately 51,000 North Dakotans are living with diabetes, of which about 30%, or about 15,300 people, require insulin, Fallabel said.

Fallabel said the American Diabetes Association will provide testimony in favor of the bill, as well as meet with legislators throughout the bill's progression to advocate for it.

"(The bill) would create excellent momentum and it would further help raise awareness that more solutions are needed to address this problem," Fallabel said in a statement. "And importantly this bill would provide economic relief to the North Dakotans which is so important during the pandemic."

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The cost of insulin has increased significantly over the past decade, with the average price of a prescription doubling from $344 in 2012 to $666 in 2016, according to the Health Care Cost Institute.

Some health experts argue there is no valid reason for insulin to significantly increase in price like it has, especially since it has been used by Americans for more than a century.

"Pharmaceutical companies are charging far more than they need to for insulin... and it seems to me that Big Pharma is charging those kinds of dollars because their customers don't have any choice," Dever said.

The proposed bill is essentially an insurance mandate, which Dever said he generally opposes. This bill is an exception, Dever said, because people are dying due to the high cost of the drug. The bill was drafted by Sen. Tim Mathern, D-Fargo, but it was decided that Dever should be the primary sponsor as the Bismarck Republican's endorsement of the bill will likely garner more support in the Legislature.

"I don't see partisanship as an issue," Dever said. "(Lawmakers) have compassion for people who don't have choices."

Mathern said he drafted the bill to ensure people are treated equally and all people have access to high-quality care.

North Dakota has a relatively small population, with an estimated 760,000 residents. Because of this, Dever said it is difficult for the state to gain nationwide attention and aid from the federal government to help with insulin costs, so this is where North Dakota needs to step in.

In April 2020, Minnesota passed an emergency insulin bill after more than a year of negotiations. The Minnesota bill allows individuals who meet certain requirements to buy a 30-day emergency supply of insulin for $25 at most once each year. The bill is named after Alec Smith, a Minneapolis man who died in his apartment in 2017 after rationing his insulin.

Money vs. well-being

When Nina Kristzberger was first diagnosed, her family decided to take a mini-vacation to the Mall of America in Minnesota. Angela Kristzberger, coming from a small town of an estimated 1,600 people, had natural worries about getting separated from Nina in the 5.6 million-square-foot complex.

Angela Kristzberger had compounded concern, however, because she knew that if she wasn't there to administer Nina's insulin and monitor her glucose levels, Nina would die.

"It is a grieving process that you go through, because you know that every day of their life they depend on that liquid to stay alive," Angela Kristzberger said.

She said because her daughter plays so many sports and is a growing 12-year-old, she often depletes a 30-day supply of insulin in less than 30 days.

On Tuesday, Jan. 5, the Employee Benefits Programs Committee, a group of lawmakers that meets during the interim, discussed a draft of the insulin capping bill, and many of the members had concerns for it, including the fact that capping the price of insulin could lead to further prescription caps for other drugs.

The committee decided to make no recommendation in favor nor against the bill, but Dever said at the meeting that he's confident lawmakers will support the bill even without the committee's endorsement.

Blue Cross Blue Shield, one of the few health insurance providers in North Dakota, announced Tuesday that it was implementing a $5 copay for patients on their plans through the Affordable Care Act. The cap does not apply to all plans or cover coinsurance, Blue Cross Blue Shield lobbyist Megan Houn told the Employee Benefits Program interim committee on Tuesday. Coinsurance is the percentage of the full cost a person pays once their deductible is met.

Both Blue Cross Blue Shield and the Sanford Health Plan, two of the largest health insurance providers in North Dakota, emphasized that they are sympathetic toward people dealing with Type 1 diabetes and agree that the costs are too high. However, both have concerns with the way the insulin capping bill is currently written, as the larger issue is that drug manufacturers and wholesale companies are the ones increasing prices, and the federal government needs to step in.

"When we cap the (copay) for the member, we are inviting the current system and manufacturers to continue their price hikes," said Daniel Weiss, Sanford Health Plan's senior executive director of pharmacy.

Weiss said there is a delicate balance between what people on their plan pays upfront at pharmacies and monthly premium payments, and if the bill is enacted as it is written, it could increase premium prices for all members by a small amount.

Blue Cross Blue Shield said in a statement it is in favor of "deferring to health plans and providers who can actively choose coverage for medications for the overall needs of its members," rather than passing the bill as it is currently written.

"We believe that statutorily mandating insulin coverage is a narrow approach when we should be working more broadly to contain drug costs and include insulin manufacturers and drug wholesalers in the solution," BCBS North Dakota spokesperson Andrea Dinneen said in a statement. "Legislatively picking and choosing which maintenance drugs will receive mandated coverage is a slippery slope that prioritizes one person’s condition over another’s."

Danelle Johnson, a North Dakota diabetes advocate who has been working to make insulin more affordable for more than six years and whose daughter lives with Type 1 diabetes, said there are so many nuances that come with managing the disease. For example, she makes sure her daughter keeps with her some form of sugar boost, like candy or juice, just in case her blood sugar drops suddenly.

"It's easy for people to say, 'Oh, just take insulin and you're good,'" Johnson said. "But they really have no idea how complicated it is."

Because the price of insulin is high for many Americans, some have ventured to travel to Canada where the price of insulin is in some cases one-tenth of the price for the same product offered in the U.S.

Angela Kristzberger said she wants the bill to pass because she doesn't want her daughter to move to another state or country just because insulin is cheaper. Many people with Type 1 diabetes are doing "phenomenal" things, she said, including U.S. Supreme Court Justice Sonia Sotomayor.

"You know, I just want (people living with Type 1 diabetes) to be happy and healthy as they can be," Kristzberger said. "(Type 1 diabetes) is just a part of them. It's not who they are."

Readers can reach Forum reporter Michelle Griffith, a Report for America corps member, at mgriffith@forumcomm.com.