When Alec Smith turned 26 last May and aged out of his parents’ health insurance, he discovered that he couldn’t afford coverage of his own. Within weeks, he was trying to ration his diabetes medication because he couldn’t afford a $1,300 refill.

A month later, the young restaurant manager was dead. An autopsy found he suffered a critical shortage of insulin, a hormone that regulates blood sugar and energy in the body.

Now, Smith’s mother is speaking out against the high and rising prices of prescription drugs and calling for legislation to prevent excessive price increases for essential medications. “The price of insulin has gone up over 1,200 percent in 20 years,” said Nicole Smith-Holt of Richfield. “It’s not affordable. You’re price-gouging people who need this one product to live, to survive.”

Drugmakers have faced growing pressure over the past year to rein in price hikes, particularly for older drugs such as insulin and epinephrine allergy injections, which have become more expensive without fundamentally changing. After accusing manufacturers of “getting away with murder” last year, President Donald Trump is expected in a speech Friday to offer new proposals for addressing costs. Minnesota lawmakers have crafted bills as well.

But advocates believe more pressure is needed at a time when drugmakers, distributors and pharmacists have few financial incentives to change.

“There is so much money involved in health care and so many different competing interests that it’s really going to be tough to get the kind of change we need without significant external pressure,” said Dr. Vikas Saini of the Right Care Alliance, a national advocacy group that has targeted the cost of insulin. Activists affiliated with the group plan to rally Saturday morning at the State Capitol.

A photo of Alec Smith displayed in his mother Nicole Smith-Holt's home. Alec Smith died after he rationed his remaining insulin for Type 1 diabetes because he couldn’t afford a refill.

Eli Lilly and Co., a major manufacturer of insulin medication, agrees with the need for expanded access but argues that manufacturers aren’t solely responsible, a spokesman said.

While Lilly’s list price for Humalog synthetic insulin has increased, its average price received, after discounts and rebates are paid, has gone down since 2009, said spokesman Greg Kueterman.

“This illustrates an imperfect system that requires more work across the health care community to ensure that insulin is accessible for everyone,” Kueterman said.

Short-acting Humalog has tripled in price over the past decade and is listed at $275 for a 10 ml bottle, which typically lasts two to three weeks. Lilly is one of three synthetic insulin manufacturers being sued for their prices and marketing tactics.

This week Smith-Holt participated in a demonstration at Lilly’s Indianapolis headquarters, and she will lead Saturday’s rally in St. Paul.

When Smith-Holt went to her son’s Minneapolis apartment to sort through his belongings after he died, she expected to find a refrigerator full of leftover Mexican fast food and crusty pizza boxes. Instead, she found fruit and vegetables in the fridge and chicken and fish in the freezer.

“He was trying,” she said.

Alec was diagnosed with type 1 diabetes at 23 after suffering flu-like symptoms. Living with his parents, he managed the disease. But it derailed his career plans, because he had trained to be a paramedic and believed his condition would make it harder to secure a job.

He moved out in early 2017 and with his mother’s help started shopping for health insurance. The best option had a monthly premium of $450 but an annual deductible of $7,600, which would have left him to pay for insulin, test strips and needles out of pocket anyway.

He stayed uninsured.

Alec told no one that he couldn’t afford an insulin refill and was rationing his remaining supply. Friends who saw him on Saturday, June 24, didn’t notice problems, but his girlfriend became worried Sunday after he refused to go to a food truck festival, saying he didn’t think he could eat any of the food. He skipped work Monday due to breathing problems and vomiting, and he was found dead at his apartment the next day.

The official cause was diabetic ketoacidosis, an insulin deficiency that forces the body to burn fat and produces an overwhelming supply of harmful acid in the blood. His next payday was only days away, his mother said. “Unfortunately, he didn’t survive that long. He lasted 27 days without insurance,” she said.

Lilly officials expressed sympathy when they met with Smith-Holt, Kueterman said. “She’s a woman with strong convictions who wants to make sure no one else falls through the cracks, and we admire her advocacy. We share her goal of ensuring that everyone who needs insulin has access,” he said.

Some Minnesota legislators want more than sympathy for patients. Rep. Erin Murphy, DFL-St. Paul, authored a bill in Alec Smith’s name authorizing the state to buy bulk insulin at a discount and make it available for free or low cost for diabetes patients with emergency needs.

“It doesn’t take that next step of driving down the cost (of drugs), which is where we need to go,” Murphy said. “But in the short term, I don’t want another example of an Alec Smith.” Her bill received an informational committee hearing but will not get a vote this session.

Fellow Rep. John Lesch, DFL-St. Paul, has proposed that the state pharmacy board monitor drug prices and alert the Minnesota attorney general to investigate any time a drug price increases by more than 50 percent in one year.

Murphy, a nurse by training, said insulin drugs have improved in duration and quality over her career, so some price increases would be expected. But she argued that the increases in recent years have been unreasonable.

Health system analysts say part of the problem rests with middleman distributors. Pharmacy benefit managers negotiate on behalf of drugmakers who want their medications included on the preferred drug lists of insurance companies. But the managers are paid based on the savings achieved below a drug’s sticker price, so they earn more as the manufacturers drive up those prices. This practice has been linked to rising costs even of generic drugs.

“People are pretty angry,” said Saini, whose organization is hosting rallies in several U.S. cities this weekend. “What’s amazing to me about this, and I think this illustrates the failure of leadership, is that everybody is wringing their hands about it, from the president on down ...[but] nothing’s happening.”

Smith-Holt says she has struggled over the loss of her son, a goofy, gangly young man who loved his 5-year-old daughter and enjoyed spending time outdoors and at Minnesota sports events. She steels herself when she talks in public, including this week, when she spoke to Lilly officials.

“I actually was really proud of myself,” she said, “that I was able to not lose my cool in front of them.”