SCOTT SIMON, HOST:
In June of 2017, Nicole Smith-Holt lost her 26-year-old son Alec when he couldn't afford the insulin he needed to treat his diabetes. Since his death, Smith-Holt has been vocal about the rising price of insulin, which has more than doubled since 2012. Last month, she testified before Senate Democrats in Washington, D.C.
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NICOLE SMITH-HOLT: I received a call that no parent ever wants to receive or expects to receive. I was told that my son was found dead in his apartment on his bedroom floor. He was found all alone.
SIMON: Bram Sable-Smith, who is health policy reporter and host of the podcast The Workaround, lives with diabetes, so this story hits close to home for him.
BRAM SABLE-SMITH, BYLINE: Diabetic ketoacidosis is a terrible way to die. It's what happens when you don't have enough insulin. Your blood sugar gets so high that your blood basically turns to acid, your cells dehydrate, and your body stops functioning. Diabetic ketoacidosis is how Nicole Smith-Holt lost her son.
SMITH-HOLT: It makes me sad. It makes me very angry. It makes me feel frustrated. It shouldn't have happened.
SABLE-SMITH: I met Nicole earlier this year when I started wondering why my own insulin prices were going up. In 2011, I was diagnosed with Type 1 diabetes, which is what Nicole's son Alec had, too. Most people's bodies create insulin, which regulates the sugar in your blood. Us Type 1 diabetics have to buy our insulin at a pharmacy because our pancreases stopped producing it. My first vial cost $24.56 after insurance. Seven years later, I pay more than $80. That's nothing compared to what Alec was up against when he turned 26 and aged off his mom's insurance.
SMITH-HOLT: He had gone to the pharmacy prior to losing my insurance to get an estimate of, you know, how much he should plan for and when they told him, $1,300.
SABLE-SMITH: That's $1,300 every month without insurance, mostly for insulin. There are many reasons why insulin prices are rising so high. Patents have pretty much kept generics off the market. Middlemen in the supply chain take their cuts. The Eli Lilly Company, one of the so-called big three insulin makers, didn't make anyone available for an interview. But a spokesman noted the rise of high deductible health plans is exposing more patients to higher prices. Alec encountered those higher deductibles when he was shopping for insurance in Minnesota. His $35,000 salary was too high for Medicaid, too high for Obamacare subsidies. What he found was a plan that cost $450 a month with a $7,600 deductible.
SMITH-HOLT: At first, he didn't realize what a deductible was because he was like I can make that work. Maybe I'll pick a part-time job, you know, and help cover the cost. I'm like, but you have to pay the $7,600 out of pocket before your insurance is even going to kick in.
SABLE-SMITH: Alec decided going uninsured would be more manageable, but he didn't make it one month. His family thinks he was rationing insulin, taking less than he needed to try to make it last till he could buy more. He died three days before payday. Rationing is a dangerous solution, but 1 in 4 diabetics admits to having done it. I've done it. Actually, a lot of Alec's story sounds familiar to me. We were both diagnosed at age 23 - that's pretty old. Then there's this.
SMITH-HOLT: I've had people actually comment online that he should have married his girlfriend for insurance. I'm like, really? It's like what's wrong with that? I'm sure you've thought about that too, right?
SABLE-SMITH: It's crossed my mind.
SABLE-SMITH: It's more than crossed my mind. I'll be freelancing soon without benefits. So my fiance, Emma, and I did get married, last weekend, one year before our actual wedding so I can get insured. Talking about Alec doesn't get any less painful for his mother.
SMITH-HOLT: The reality of the situation - it hurts every time I have to share this story, but I know that I am doing it for a good cause.
SABLE-SMITH: It is worth sharing, she says, so long as it helps someone who hears it. For NPR News, I'm Bram Sable-Smith.
SIMON: And that story comes to us from a reporting partnership between NPR, Side Effects Public Media and Kaiser Health News.
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