Ever since her son Alec Smith died in 2017, after rationing his insulin because he couldn’t afford the $1,300 monthly cost, Nicole Smith-Holt has talked to thousands of people about how the tragedy happened.
“I never get tired of telling Alec’s story,” she said. “It steals a little piece of my heart every time I do it, but it is important for people to know that his death was absolutely preventable. He should be with us today. I will continue to share his story until we get this fixed and it never happens again.”
Just a few months after Alec’s death at age 26, Smith-Holt launched a campaign to make it easier for people with diabetes to access insulin even if they, like Alec, are uninsured or otherwise can’t afford the cost of their medication. In 2020, thanks in large part to Smith-Holt’s advocacy, the Alec Smith Insulin Affordability Act was signed by Gov. Tim Walz. The law guarantees one-time emergency or ongoing supplies of insulin for Minnesota residents who cannot afford the cost of the drug, and it was the first such legislation passed in the United States.
While many Minnesotans have taken advantage of the new program, known as the Minnesota Insulin Safety Net Program, there are still many others who are eligible for the benefit but who haven’t heard about it. Now, a new video is trying to address the situation: The “Alec Smith Story,” produced by MNsure, the state’s health insurance marketplace, features Smith-Holt retelling her son’s story and explaining the program and how eligible Minnesotans can sign up.
Smith-Holt said she decided to get involved in promoting the program after she began hearing from people who said they or their family members were still struggling to afford their insulin, even after the bill was signed into law.
“I had been contacted a lot through social media from people wanting help,” Smith-Holt said. “I was seeing posts on Facebook from people saying they didn’t know this program existed.” She’d also heard from people who’d gone to pharmacies asking for emergency insulin but were turned away.
Frustrated by what she was hearing, Smith-Holt met with the state legislators who’d spearheaded the act as well as representatives from MNsure, the state agency charged with managing public awareness about the Minnesota Insulin Safety Net Program. The group brainstormed ways to get the word out about the program, eventually deciding on the video, because they felt that the finished product could easily be distributed through social media.
“We really wanted to use it as an educational tool for both diabetics and for pharmacists and other health care professionals,” Smith-Holt said. “Hopefully we could also make more nurses and doctors and care providers aware that this program existed.”
Libby Caulum, MNsure senior director of public affairs, said that Smith-Holt’s participation has been key to the program’s success. “There is not a better spokesperson for this than Nicole,” she said. “Her activism and her dedication to making sure this doesn’t happen to other people is the impetus for the law.”
The program does not have a big enough budget to afford large-scale ad buys, so organizers are hoping the video will spread organically, through “grassroots” social-media shares. Because Smith-Holt has been willing to step forward and become a symbol of the insulin-affordability issue, people are interested in listening to what she has to say, Caulum said.
“My perspective is the more we can get people to know about the program the better,” she said. “There are so many people who are facing these kind of life-or-death situations who do not realize that there is help out there. The more people who know the better.”
How the program works
There are two parts to Minnesota’s insulin affordability program. First, there is the “urgent need” program where eligible Minnesotans can receive a once-per-year 30-day supply of insulin immediately at their pharmacy for no more than a $35 co-pay. An individual who meets the program’s eligibility standards — someone who isn’t enrolled in Medical Assistance or MinnesotaCare, has proof of state residency and a current prescription for insulin with less than a seven-day supply on hand — can walk into a commercial pharmacy and request a supply.
Most pharmacists in the state are required to participate in the program, said Cody Wiberg, executive director of the Minnesota Board of Pharmacy. One key element is that the law allows pharmacists to hand out the emergency supply without completing extra paperwork. “The pharmacy is not responsible for checking the income and the employment status and the insurance status,” Wiberg said.
While insulin manufacturers all offer prescription assistance programs designed to help low-income or uninsured individuals afford medications, he said that applying for those programs can be a cumbersome process.
“One of the criticisms of manufacturers is they could take a week or longer to process an application for one of these programs while the person in need went without insulin,” Wiberg said. “Now, manufacturers are required to pay for a one-month supply.”
The free month-long supply of insulin is designed to give individuals time to confirm their eligibility for manufacturers’ programs, to purchase health insurance or to sign up for medical assistance.
“That month is supposed to give them at least some time,” Wiberg said. “If they do apply for one of those programs and they haven’t heard back by the end of the month, they can get a second 30-day supply.”
The second part of the program is the “Continuing Need” program, where MNsure health insurance navigators help eligible participants sign up for insulin manufacturers’ affordability programs. Approved participants can qualify for a year’s supply of insulin for no more than $50 for a 90-day refill.
At first, Smith-Holt and other advocates were concerned about building a program based on insulin manufacturers’ existing affordability programs, because the manufacturers had written disclaimers into their programs that they could end the programs at any time, Wiberg said. “There were stories of people who should’ve been eligible for these programs but who weren’t enrolled properly and didn’t get their insulin.”
In the end, the law was written to allay the concerns of advocates, Wiberg explained. “The law now tells insulin manufacturers that as a condition to receive a license from the Minnesota Board of Pharmacy they have to set up a patient-assistance program that has urgent need and continuing need components, you will follow the state’s criteria, you will set it up and you have responsibilities to patients in order to make sure that patients can access insulin in an emergency.”
‘Not one more’
While Alec Smith’s death of diabetic ketoacidosis — a potentially fatal complication of diabetes that occurs when a person’s body produces high levels of blood acids after being deprived of insulin — was preventable, his decision to ration his insulin wasn’t uncommon.
“It’s a pretty common thing for folks to do,” Caulum said, and “Nicole’s whole purpose in pushing this law is to make sure that no one in Minnesota gets to the point where they feel that their only option is to ration.”
Smith-Holt said Alec had decided to ration until he found a job with health benefits. He’d been diagnosed with Type I diabetes just two years before his death, and though he was doing a good job of living with his disease, he was “still pretty new at trying to learn how to manage it,” and didn’t fully understand rationing’s potentially deadly toll.
While deaths due to insulin rationing don’t happen every day in Minnesota, they still do happen, Wiberg said, and he and his pharmacy colleagues hope that legislation will make them even more rare. “Even one death is too many,” he said.
Smith-Holt said that she hopes that social media users will forward “Alec Smith Story” far and wide, further spreading the news that Minnesotans with diabetes no longer have to ration their insulin.
“We’ve been doing what we can with our limited budget for this program’s public awareness,” she said. “Reaching people through social media has been pretty successful so far, but we know there is more we can do. One of the things I can do is tell his story and explain why this is so important, so I’m doing that.”