EVELETH - Travis Paulson lay in bed, miserable with what felt like a bad case of the flu.
He had known that not taking insulin for his Type 1 diabetes would leave him sick and in pain, Paulson says now.
He didn't know that he might not live until he could again afford his insulin.
"Now I know that people have died from this," the 46-year-old Eveleth man said last week. "You can die from diabetic ketoacidosis in hours, not days or weeks or months. I could have easily died in my sleep and didn't know it."
Earlier in his life, Paulson went through that experience 9 or 10 times, he said. It wasn't because of stubbornness or a strange desire to see what would happen. It was because he simply couldn't afford the insulin that kept him alive.
Now he's on disability, with Medicare coverage and living with his mother in the modest house he grew up in a block from Eveleth-Gilbert Senior High School. He now can afford the $700 a month out of pocket it costs him for diabetes and other conditions it has caused, although it leaves him financially strapped.
It wasn't enough.
Finally able to manage his own diabetes, Paulson has become a crusader on the issue of the high cost of insulin, and particularly its effect on working-class Americans.
"They're the ones that are working every day, but they still can't make ends meet," Paulson said during an interview in his cozy, orderly home. "They're unable to afford their health care. They're unable to afford to take proper care of themselves. They're skipping medicine."
Paulson places the blame squarely on the pharmaceutical industry and what he considers to be the failure of federal and state government to institute needed reforms.
He clicks off a list of legislators he has contacted: U.S. Rep. Pete Stauber, R-Hermantown - for reform but doesn't like to get specific; Sen. Amy Klobuchar, D-Minn. - a "yes" for reform but the measures she proposes are "patchwork" rather than hitting the heart of the issue; Sen. Tina Smith - "I haven't heard much."
Paulson offers a platform of what he considers meaningful reforms. He's calling for price transparency, deregulation to force competition into the market and earlier expiration of patents.
"On medicines that have been out for 20, 25 years, there's no reason that they should be holding a patent on it still," Paulson said. "There's no competition."
The $350 vial
Articulate and knowledgeable and an indefatigable researcher, Paulson has the visual aids to make his case that insulin is sold at an artificially inflated price in the U.S.
Sitting at his dining room table, he held tiny vials of insulin in each hand, each with identical contents and manufactured by the same company. The vial purchased in Canada cost $40; the vial purchased in the U.S. cost $350. He has checked the price for the same amount of the same insulin from the same company in other countries, as well: $40 in Taiwan; $50 in Greece; $60 in Italy.
"So really, if you're American, you're going to pay more for being an American," he said. "That's about what it comes down to."
Part of the reason for the high cost of insulin is that it is more expensive to manufacture than many drugs, said Mike Swanoski, senior associate dean in Duluth for the University of Minnesota College of Pharmacy. But another factor, he said, is lack of competition.
"There's really only three manufacturers of insulin," Swanoski said. "They've really protected their turf."
Programs designed to absorb some of the cost don't help working-class people, Paulson contends. County assistance and manufacturer rebate programs have an income cutoff of $750 per month, he said. If you have a car worth more than $5,000, if you own a house, if you have $2,000 or more in the bank or if you have other assets, you also won't qualify.
"It's really not set up to help the working class, the people that are actually out trying to make it for themselves," he said.
Skipping his insulin injections altogether was the most extreme measure, but Paulson found himself having to take many unhealthy steps to make the drug last as long as possible. He'd skip meals, going days or even as much as a week without eating. Insulin processes the food in your body, he explained, so if you don't eat, you don't need as much insulin.
It's called insulin rationing and is practiced of necessity by many diabetics, Paulson said.
Swanoski said he knows that some diabetics practice insulin rationing. With other drugs, too, people cut pills in half or take a dose every other day instead of daily because they can't afford the full dose, he said. It may come down to the individual's insurance plan.
"With all the insurances, some are great and some not as great," he said.
Paulson believes his insulin rationing contributed to the development of other autoimmune diseases with which he has been diagnosed. He has lupus, celiac disease, allergies to sunlight and rheumatoid and osteoarthritis. He has undergone 25 surgeries to his eyes and is given a monthly injection in each eye. He faces the possibility of blindness and already can't see for the first few minutes of the day and can't drive at night.
As the cost of insulin increased, his personal wealth decreased. He had a house and was something of a sports car collector, with a Lamborghini, a Lotus and a 1966 Ford Mustang. His career took him to Arizona, San Diego and Seattle.
He took a pay cut during the Great Recession in the 2000s. That's when he sometimes went without insulin altogether. He had to sell his cars to make ends meet. Eventually, he moved back to Eveleth, no longer able to afford to live on his own.
Since qualifying for disability a few years ago, Paulson has been able to stabilize his medications. But the system is wasteful, he argues, because people who could be productive through a normal working life end up on public assistance much sooner.
"Type 1 diabetes isn't like Type 2," Paulson said. "You should be able to go your whole life with no complications pretty easily. There are people that are going blind. They are ending up dead, with kidney failure, ketoacidosis. People are hospitalized. They go on Medicare and can't work anymore.
"These are huge costs to America."