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Her son couldn't afford insulin and died. Now she's fighting Big Pharma.

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Nicole  Smith-Holt says her son died because he could not afford insulin.
Nicole Smith-Holt says her son died a little more than a year ago because he could not afford insulin.
Mark Zdechlik | MPR News

Some health care providers and consumers are using this Mother's Day weekend to raise awareness of the soaring cost of diabetes drugs. There's a rally at the state Capitol Saturday to call attention to the severe consequences and possibly even death facing people who can't afford enough insulin. 

Nicole Smith-Holt will tell the painful story of her son to the crowd.

"It hurts," she said. "It hurts because I know that he would be here today if the price of insulin weren't so darned expensive."

"He" was 26-year-old Alec Raeshawn Smith. At about this time last year, he aged out of the family's health insurance coverage. A little more than a month later he died alone in his apartment.

"He was found on his bedroom floor," Smith-Holt said, adding that he would have been fine if his insulin and supplies had been affordable for him.

There will be a rally Saturday at the State Capitol for affordable drugs.
Nicole Smith-Holt lost her son because he couldn't afford all the insulin he needed to keep his diabetes in check. She'll be among those protesting high insulin prices at the state Capitol Saturday.
Mark Zdechlik | MPR News

"After the fact, we heard that he had visited the pharmacy and was kind of slapped in the face with the reality of the price tag," she said. "He didn't have that much in his bank account on that day so he left, and rumor has it that he was trying to stretch what he had left of his supply to last a couple more days to his payday so that he could pick up his prescriptions."

He didn't qualify for public health insurance programs and couldn't afford to buy coverage. But many people with health insurance are having problems paying for their diabetes supplies because so many plans require significant out-of-pocket spending before coverage kicks in. 

Smith-Holt wants the federal government to strengthen regulation of pharmaceutical companies so more people aren't priced out of life-saving medicine.

She is not alone.

Earlier this week in Washington, D.C., the American Diabetes Association's Chief Medical Officer Dr. William Cefalu told a Senate committee that the nearly 7 1/2 million Americans who use insulin to control diabetes saw the price triple from 2002 to 2013.

"The American Diabetes Association believes that no individual in need of insulin should ever go without it due to prohibitive cost," he said.

Cefalu said there doesn't seem to be any real business reason for the price increases. He said technical advances driven by expensive research and development are not behind the cost increases. He testified that it's difficult to determine what's going on given the murky nature of business relationships between manufacturers, pharmacy benefit managers and insurance companies.   "What we're finding is a system of opaque negotiations where there's a flow of money that we don't understand. We really don't understand where the profits lie. We think there are incentives at every level of the supply chain that facilitates or even encourage the high list price," Cefalu said. 

Susan Collins, R-Maine, chair of the Senate's Special Committee on Aging said she's never seen anything so complicated.  

DFL Minnesota Sen. Amy Klobuchar is not a member of that committee but she is the highest-ranking Democrat on the Consumer Antitrust Committee. Klobuchar said Republicans in control of the Senate have blocked her efforts to bring pharmaceutical company executives before that committee to answer questions about pricing.

"What you see time and time again, not just for insulin but you see prices going up for mainstream drugs when the pharmaceuticals companies think they can do it. They're basically holding people hostage and that's why we must get more competition," she said.

Klobuchar has long promoted allowing people to buy prescription drugs at lower prices abroad, freeing Medicare to negotiate drug prices, and banning tactics pharmaceutical companies use to keep lower-priced generics off the market. 

She's convinced drug prices will be part of the debate in this year's midterm elections.

Until the law is changed Klobuchar said rallies like Saturday's are important to call attention to the problem. 

The Pharmaceutical Research and Manufacturers of America did not respond to an inquiry about diabetes drug pricing in time for this report.

Eli Lilly and Company, one of the top three insulin manufacturers, acknowledged the pricing system is complicated and imperfect and in need of a solution that would give those who need insulin reasonable access to it. 

Smith-Holt, whose son died because he couldn't afford insulin, said she'll keep telling his story. 

"I want to share Alec's story and our struggle — our grief — to hopefully make a change, to make people aware of what's going on out here."