DIABETIC DILEMMA High cost of insulin is constant worry
A crack in one tiny glass jar is all it takes to throw off the Pickering family’s budget for the year.
Chris Pickering, of Yukon, has Type 1 diabetes, which requires him to take insulin. At times, he’s had to pick up extra hours at work, go without car insurance, sell off belongings and cancel family vacations to afford insulin, he said.
Pickering has insurance, but he has to spend about $4,000 on his family’s care before his plan starts picking up the cost. They usually meet that threshold by May, he said, but then spend much of the rest of the year building up a nest egg for next year’s deductible.
Even after Pickering’s family meets the $4,000 deductible, insurance covers only two vials per month, so they have to come up with the money if a vial breaks or he needs more insulin than usual. Eating more carbohydrates, getting sick or being stressed all can cause a person to need more insulin to manage blood sugar levels.
“All it takes is one slight miscalculation or an illness, and I’m having to go break the bank to get more insulin,” he said. “It rules our financial life.”
Insulin is a hormone produced by the pancreas. It moves glucose, a type of sugar that is the building block of carbohydrates, into the body’s cells, where it’s used for energy. When you eat something with carbohydrates in it, the body releases insulin to keep your blood sugar within a normal range.
It doesn’t work that way for people with Type 1 diabetes, because their immune systems have attacked the pancreas and destroyed its ability to make insulin. They have to take shots of insulin for a lifetime to prevent dangerous blood sugar fluctuations. Some people with Type 2 diabetes, which is more common and is linked to unhealthy lifestyles, also need to use insulin.
Pickering isn’t the only person who has seen the cost to treat his diabetes go up. The price of a milliliter of insulin tripled from $4.34 in 2002 to $12.92 in 2013, according to a study from the University of Michigan Institute for Healthcare Policy and Innovation. The study counted spending by both patients and insurance companies.
The average user needed 171 milliliters of insulin in 2002, bringing the annual cost to about $742. By 2013, the cost to use the same amount had risen to $2,209.
For some people, high insulin prices have led to worse consequences than going without car insurance. About one-quarter of insulin users with private insurance or coverage through Medicare or Medicaid reported costs had affected their ability to buy or use insulin in the most recent year. Half of people without insurance said the same thing.
About one-quarter of those who said they had trouble affording their insulin said they took less than prescribed. One-fifth said they missed a dose at least once a month, and more than onethird said they cut back on other medications.
Those who had trouble affording their insulin were more likely than other users to have abnormally high or low blood sugar, or to visit an emergency room. Very low blood sugar can cause a person to go into a coma, while high blood sugar damages the heart, kidneys, eyes and nerves over time.
Debate over drug prices
The price of insulin has become a flashpoint in the ongoing debate over health care costs in the United States. The state of Nevada recently passed a law requiring insulin makers to reveal their production and marketing costs; Vermont Sen. Bernie Sanders has called for an investigation of what he called collusion to raise prices; and Minnesota Attorney General Lori Swanson filed a lawsuit earlier this month alleging manufacturers had inflated the price of insulin to gain favor with drug middlemen, according to the Star Tribune.
Novo Nordisk, one of the three largest insulin manufacturers, said its practices comply with all relevant laws. Drugmaker Sanofi described the Minnesota lawsuit as without merit. The third large manufacturer, Eli Lilly, didn’t respond to a request for comment. The three companies control more than 90 percent of the insulin market.
Some patient groups and politicians have laid the blame on drugmakers, while the drugmakers pointed the finger at middlemen, known as pharmacy benefit managers, who negotiate what insurance plans will pay for drugs and get to keep rebates the drugmakers pay. Policy wonks also have pointed out that the increasing popularity of high-deductible plans has left patients exposed to more of the price increases, because they have to pay more for their medications before their insurance kicks in.
Whatever the reason, prices have kept going up. Since January 2014, the average price a patient would pay when buying insulin without insurance has increased 64 percent, according to prescription drug website GoodRx.com.
Despite public outrage, Sanofi and Novo Nordisk have increased prices by about 3 percent this year. Eli Lilly has held prices steady since May 2017, after increasing the price on its insulin brands every six months for several years.
Prices keep rising on old drugs
A small team of Canadian scientists discovered insulin in 1922. In those days, people with diabetes had to take insulin from animals, but that’s been replaced by insulin made using bacteria that are altered to churn out the hormone, a process that’s been around since the 1980s. Since then, drug companies have come up with longer-lasting versions, which smooth out bloodsugar fluctuations, and shorter-acting versions to take with meals, said Dr. Madona Azar, an endocrinologist at the Harold Hamm Diabetes Center.
The newer insulins do have some advantages and are often easier to use, Azar said, but some people’s insurance won’t pay for the expensive versions, and others can’t afford the out-ofpocket costs. In those cases, she starts with the cheapest type that is likely to work for the patient, and if it doesn’t work for the patient, she tries to piece together financial help to pay for a more expensive version, like drug coupons, free samples or even insulin that was donated after another patient passed away, she said.
“I try to pick what is medically appropriate for the patient, obviously, but what is also not going to break the bank,” she said.
Some of the oldest forms of insulin on the market still cost as little as $25 per vial, Azar said. Others have increased in price rapidly, for reasons that make little sense to her. There are at least four long-lasting and five short-acting insulins on the market, and production costs haven’t gone up, she said. One patient recently mentioned the insulin she uses cost about $90 a vial when she started, and now sells for about $1,000.
“It’s an insulin (formulation) that’s been out since the 50s and 60s,” she said.
Unfortunately, some patients don’t feel like they can easily switch to one of the cheaper versions.
Clayton McCook, of Edmond, has a 10-year-old daughter with Type 1 diabetes. Her insulin costs about $340 per vial, and the family’s insurance plan requires them to spend $3,000 on each member’s care before it will begin covering that person’s care. For example, if he got kicked by an equine patient in his work as a large-animal veterinarian, any medical bills he racked up wouldn’t count toward the out-of-pocket spending their insurance requires before covering his daughter’s care.
Despite the high cost of her insulin, switching isn’t an option, McCook said. Older forms of insulin don’t work with the pump his daughter uses to keep her blood sugar level, and require strict meal planning — a challenge with kids, who want to be able to eat with their friends, he said.
McCook estimates his family spends about $20,000 per year on insurance premiums and out-of-pocket costs. Fortunately, they earn enough that they don’t have to make major sacrifices, he said, though they’ve kept their 12-yearold car running longer than they otherwise would have.
“If we had that $20,000, or even the couple thousand we spend on insulin, that would make a difference to our budgets,” he said.
Managing costs
Some insurers have decided to manage the price increases by requiring patients to try a cheaper form of insulin first, or requiring doctors to submit extensive documentation to prove why a patient needs the more expensive version. SoonerCare, Oklahoma’s Medicaid program, uses that process, called step therapy, for some forms of insulin.
Burl Beasley, assistant director of pharmacy at the Oklahoma Health Care Authority, said insulin prices haven’t been a significant problem for SoonerCare, however. On paper, SoonerCare spent about $29.3 million on insulin for about 7,800 people in 2017, but the actual cost was about half that because of rebates the state receives, he said.
The rebates rise along with prices, Beasley said, so the state can keep offering insulin to adult SoonerCare members for the usual $4 co-pay without busting its budget.
“That offsets the cost for us,” he said. Even though state government isn’t feeling the pinch of rising prices, McCook and Pickering are counting on it to help address their financial strain.
Both are active in the “diabetes caucus,” a group of activists asking lawmakers to order an interim study on insulin costs and to consider a cost transparency law like one Nevada recently passed.
Pickering doesn’t hold out much hope for prices to go down without changes to state or federal law.
“It’s not an option. We are held hostage by the cost and by our illness,” he said.