The true cost of rising insulin prices

MAPE member Nicole Smith-Holt has become a national advocate and somewhat of an expert on something she’d rather know nothing about. In 2015 her 24-year-old son, Alec, was diagnosed with type 1 diabetes. Two years later he was dead. Her young, vibrant and full-of-life boy was gone, and all because of a treatable disease in which a pancreas does not produce insulin.

By June of 2017, Alec was 26-years-old and no longer eligible to be covered under Nicole’s health insurance. Alec didn’t have access to benefits at the job he was working at the time, and wasn’t eligible for any kind of Affordable Care Act assistance due to income, family size, etc. The best plan they could find was $450 a month with a $7,600 deductible.

“The deductible was just too high,” Smith-Holt said. “He decided not to purchase at that time and started looking for a different job with benefits so he wouldn’t have to worry about paying so much for his prescriptions.”

Without insurance, Alec’s monthly insulin supplies would cost $1,300.

“He didn’t have the money or ask anyone for help and instead decided to alter his diet to make his insulin last a little longer until he got paid,” Smith-Holt said.

Alec was found dead from a lack of insulin in his apartment on June 27, just three days short of his paycheck.

As she grieved the loss of her son, Smith-Holt believed Alec’s death to be an isolated incident, that “somehow we failed, or he failed.” But about two months later a friend sent her a message about a local TV station doing a story on the rising price of insulin. She submitted Alec’s story and the rest is history.

“Alec’s story went global,” Nicole added, “People were contacting me like crazy sharing stories of how their families struggled to afford insulin. I realized it wasn’t just my family. It wasn’t us that failed. It’s the pharmaceutical companies failing us.”

Working closely with national and local advocacy groups and her state and federal legislators, Smith-Holt is hoping to help create state and federal laws that would protect people from big pharma’s “price gouging.”

“It’s not fair. It’s an injustice. But sharing Alec’s story and advocating can make changes. This is what I need to do,” she said.

When she’s not rallying in St. Paul or Washington, D.C. or attending the State of the Union as Sen. Amy Klobuchar’s guest, Smith-Holt works at Minneapolis Community and Technical College (MCTC) as a financial aid specialist.

“MCTC has been amazing. My direct supervisor is one of my biggest cheerleaders,” she said. “Two weeks ago, they gave me an award for my community involvement. They’ve rallied with me.”

Nicole also credits MAPE with supporting her through the process of drafting legislation and advocating at events that take her away from her work. Her husband is a member of Service Employees International Union (SEIU) and she says both of their labor unions have been helpful in her journey to change the way prescriptions are managed.

She’s tracking several bills, one titled after her son – The Alec smith Emergency Insulin Act – which would provide insulin on an emergency basis for someone without insurance; a bill that could have saved Alec’s life.

“It gives me hope. It feels like a little bit of justice. It also hurts my heart to know that if I had known prior to Alec’s death that affordability of insulin is such a huge issue in the US, it would have given me motivation to work toward these bills,” Smith-Holt said. “I know in my heart these bills will save someone else’s life.”

Until those bills pass, she’ll keep advocating for change, sharing Alec’s story and rallying for new, life-saving legislation. Attorney General Keith Ellison just tapped Smith-Holt to chair his prescription drug task force, an honor she eagerly accepted.

“With our collective voices, we have this much power and can actually force change; hopefully permanent, lifesaving changes,” she said.

If you’re interested in taking action for people like Alec, join us March 5 at the State Capitol for Minnesota’s Diabetes Advocacy Day.