Every day, Craig Williams walks through the wards at Oregon Health &
Science University hospital asking patients why they were admitted.
More frequently than ever before, says Williams, a professor at the Oregon State University-OHSU School of Pharmacy, patients tell him they are diabetics who have experienced complications. That’s because they’ve either rationed their insulin, they say, or stopped taking it altogether.
“When you ask why,” says Williams, “it’s cost.”
His observations are confirmed by state figures, which show the incidence of people being hospitalized because of complications from diabetes is up 23 percent over the past decade.
People with diabetes often inject insulin multiple times a day. (Sam Gehrke)
The high price of insulin is an issue in every state, but it’s a particular problem in Oregon. Nearly 1 in 10 Oregonians suffer from diabetes, a rate well above the national average. Without daily doses of insulin, many would die.
That’s in part because insulin is so expensive. U.S. list prices have risen 500 percent over the past decade.
That’s not because insulin is a high-tech wonder drug. Experts say the insulin formulations made by Novo Nordisk, Sanofi and Eli Lillyāthe three companies that dominate the global insulin tradeāhave changed relatively little since the turn of the 21st century.
“It’s basically the same drug with some modifications,” says Dr. Andrew Ahmann, a diabetes specialist at OHSU. The increase in the cost, he says, “makes no sense.”
Ahmann, who’s been researching and treating diabetes for 30 years, says U.S. insulin prices, which are four times higher than prices in other developed countries, are an enduring mystery.
Two Oregonians say they have solved the puzzle.
Julia Boss and Charles Fournier in their war room. (Todd Cooper)
Three years ago, Julia Boss and Charles Fournier became outraged at the cost of insulin for their daughter Genevieve, then 8. So they did something about it: They started a nonprofit, the Type 1 Diabetes Defense Foundation, turned their Eugene home into a war room, and set about decoding the complex supply chain between drug makers and diabetes patients.
Their conclusion: The culprit is a hefty, secret rebate that drug makers pay to middlemenāmostly health insurance companiesāwho obtain insulin for patients.
In 2017, Boss and Fournier filed a lawsuit against the manufacturers and those insurers, alleging they were conspiring to artificially inflate insulin prices. (The case is pending.) More recently, they have turned on state regulators, like the Oregon Insurance Division, arguing the agency has not done its job.
“Protecting the public from being overcharged is Insurance Regulation 101,” Fournier says. “And Oregon’s insurance commissioners aren’t even close to earning a passing grade.”
The result? Un- and under-insured Oregonians with diabetes are paying exorbitant out-of-pocket costs.
A recent email exchange between Fournier and Oregon Insurance Commissioner Andrew Stolfi captured the intensity of the issue. When Fournier criticized Stolfi’s agency, which sets health insurance rates, Stolfi complained about his tone.
“My tone is not the issue that should be concerning you,” Fournier replied to Stolfi in an Oct. 19 email. “People are dying and going bankruptāor incurring life-threatening medical complications as they ration insulin.”
Not everybody pays sky-high prices for insulin: Public employees and private workers with high-end insurance plans get a vastly better deal. But the growing number of people who lack Cadillac insurance coverage face crippling out-of-pocket costs that force them to use less insulin than they need or go without. Doctors and patients say either can have catastrophic consequences.
Sandra Cook, 34, and her daughter, Emma, 11, both suffer from type 1 diabetes.
Cook, 34, a single mom who lives in Bend, has had diabetes for three decades. Three years ago, Cook, had insurance through her employer, but it came with a $2,500 per person deductible.
That meant she had to pay cash for insulin for both her and her daughter for several months before her insurance began paying.
“I rationed my insulin,” says Cook, who lives in Bend. “I was taking only half of what I needed and giving the rest to Emma. It was depressing and made me feel like crap physically and mentally. I ended up in the hospital for three days.”
Cook says she has friends in a diabetes support group who’ve gone without, shared insulin and used expired products.
OHSU’s Ahmann says that’s consistent with his experience. “We see a lot of patients who ration their insulin,” he says. “And we see lots of people who are spending a disproportionate amount of their incomes.”
Cook’s daughter, Emma, a Girl Scout, is now on her father’s insurance (her parents don’t live together). Cook says that insurance creates hardships, because it only works with certain pharmacies.