Marin teen with diabetes to join lobbying push in Congress

If 15-year-old Jamie Kurtzig of San Anselmo hadn’t happened to glance at her smartphone she might not be alive today.

Jamie, who was diagnosed with Type 1 diabetes during her first year of life, is one of 160 youth advocates who will travel to Washington, D.C., next month to lobby for diabetes research funding and lower insulin prices.

She uses the latest high tech equipment to automatically monitor her blood sugar levels and inject just the right amount of insulin into her body as needed without the use of a syringe.

But on that fateful day in April, Jamie’s equipment failed her.

“It malfunctioned,” said her mother, Sara Kurtzig. “It ended up delivering her 19 units of insulin at one time. She normally takes about that amount in a 24-hour period.”

Sara Kurtzig knew it would take just 30 minutes for the insulin — injected subcutaneously by an insulin pump that Jamie wears at all times — to hit her daughter’s system and send her into shock.

“The only way to fix such an excess of insulin would be sugar to balance out the insulin,” her mother said. “We figured out Jamie would have had to eat 390 grams of carbohydrate so there was no way she could have eaten that volume of sugary food in 30 minutes.”

Sara Kurtzig said she wasn’t sure if they could get to Marin General Hospital in time from their home in Sleepy Hollow during evening traffic. So they rushed to the nearest fire station instead.

“Thank God, they were so good there,” she said. “I parked my car in front of the firehouse and ran in and said, ‘My daughter needs an IV right now.’”

Jamie and the other youth advocates going to Washington, D.C., will focus their lobbying efforts on the Juvenile Diabetes Research Foundation’s top legislative priority, renewal of the Special Diabetes Program. This program, which contributes $150 million annually to Type 1 diabetes research through the National Institutes of Health, is set to expire by Sept. 30.

“We just really want this program to be renewed,” Jamie said. “It’s super important to me since it has helped Loop come about.”

Loop, the system that Jamie uses, is an Apple app that links an iPhone to a continuous glucose monitor and an insulin pump to allow people with diabetes to receive automated doses of insulin. Before she started using Loop, Jamie had to prick her finger 12 to 15 times daily to monitor her blood sugar levels.

But renewal of the Special Diabetes Program isn’t the only thing Jamie plans to talk about with members of Congress. She says she also will tell them they need to do something about skyrocketing insulin costs.

Jamie has already had a chance to bend the ear of Marin’s congressman, Rep. Jared Huffman, D-San Rafael, during a roundtable discussion sponsored earlier this month by the Braden Diabetes Center in Greenbrae.

“The price of insulin has gone up astronomically,” said Dr. Linda Gaudiani, an endocrinologist and co-founder of the Braden Diabetes Center. “A bottle of insulin used to cost $20; now it costs $300. If you have a child with Type 1 diabetes, just imagine that.”

Sara Kurtzig said, “We live in Marin. We are a very lucky family. We can afford it, but it is just sickening that many people cannot. This is a life-saving medicine; it isn’t a luxury item.”

More than 30 million people in the United States, including more than one in four seniors, have diabetes. In 2017, diabetes contributed to the death of 277,000 Americans and was the primary cause of death for 85,000 of them.

Gaudiani said 7,500 people have been treated for diabetes at the Braden Diabetes Center since it opened in 2013.

“Diabetes is growing not shrinking in our population,” she said.

Gaudiani said Type 2 diabetes, which constitutes the vast majority of diabetes cases, is directly related to a sedentary lifestyle, weight gain and a diet high in carbohydrates and sugar.

“When I was doing my training you didn’t see type 2 diabetes in adolescents,” Gaudiani said. “Now we’re seeing Type 2 commonly in the adolescent population. As our population becomes more obese and sedentary, we become more at risk for Type 2.”

“We know we’re going to be needing more and more insulin,” she said.

Jamie, who will be a sophomore at Marin Academy this fall, looks to the future with trepidation because of the price of insulin.

“I’m really scared for when I am out of college,” she said, “because I will have to take on the financial burden of Type 1 diabetes.”