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Nicole Smith-Holt holds a loud speaker as she protests outside a drug company about the high cost of insulin. Her husband stands beside her, holding a sign that reads: "Patients Over Profits."

What happens when you can’t afford your insulin? For the Smith-Holt family, the answer to this question was tragic.

“I was shocked,” says Nicole Smith-Holt, remembering when her son Alec was diagnosed with Type 1 diabetes. “I knew that it was called juvenile diabetes, so I assumed that they had the wrong diagnosis since he wasn't a juvenile. I did some research and found out that at any age you can be diagnosed with Type 1.”

Alec Holt was just 24, and it was a big adjustment, learning to follow a careful insulin regime, eating healthier, counting carbs. “I was worried about him,” his mother said. “He probably lived on Taco Bell, pizza, and Burger King more than he should have. His endocrinologist really wanted him to stop with the fast food. I think that was the hardest part for him.”

But Alec did so well that his parents didn’t worry again when, just two years later, he planned to move out of the family home and into his own apartment. At the time, it was exciting for them all. How could they know the timing would be catastrophic? He’d just turned 26, aging out of his family’s health insurance, and he’d just been promoted at work. In a few weeks he’d be getting a raise, and that meant he wouldn’t qualify for state or Affordable Care subsidies, or patient assistant programs from the insulin companies. Stubbornly, Alex made a decision: he wouldn’t tell his family and he’d ration his remaining insulin until he got paid and could afford to buy more.

“I had seen him exactly seven days prior to his body being found,” his mother says. “He was over visiting, and he looked just fine. When I got that phone call seven days later, I thought it had to have been a mistake.” It wasn’t. Alec had died of diabetic ketoacidosis, caused by a lack of insulin.

From that day forward, Nicole Smith-Holt and her family have been on a mission: “Alec’s death has fueled my fight for affordable and accessible insulin for all.”

The Smith-Holt Family Story - Minneapolis, MN

The Cost of Insulin

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