People with Type 1 diabetes spent $5,705 per person on insulin in 2016 the latest year for which data was compiled by the nonprofit Health Care Cost Institute. That’s a $2,841, or 99%, per-person increase over 2012. The rising prices are causing many diabetics to go to extremes, including rationing, which can result in death.
Mindi Patterson’s family pays nearly $1,000 each month for insulin.
Her husband, Roc, 47, and her two sons, 19-year-old Pierce and 14-year-old Martin, are all Type 1 diabetics who need insulin to survive.
But the medicine they so desperately depend on comes at a hefty price.
The family pays between $300 and $400 a person in out-of-pocket costs on insulin each month. “It’s really expensive,” the 49-year-old Dayton, Ohio, mom said.
Without health insurance through Patterson’s job at Costco, the family would pay close to $5,000 a month for the life-saving medication, she said.
“I don’t make anywhere near that. We’re just one misstep away or car accident away” from financial disaster, Patterson said.
In people with Type 1 diabetes, the pancreas can’t make insulin. Those with the condition require several doses of insulin a day and spent $5,705 per person on it in 2016, an increase of $2,841, or 99%, per person since 2012, according to the nonprofit Health Care Cost Institute.
Costs continue to rise, so much so that almost half of diabetics have temporarily skipped taking their insulin, according to a 2018 survey by UpWell Health, a Salt Lake City company that provides home delivery of medications and supplies for chronic conditions.
“Insulin prices doubled in a four-year period,” said Cathy Paessun, the director of the Central Ohio Diabetes Association. “They continue to go up, and the infuriating thing is that there is no change in the process for creating the product.”
The escalating cost of insulin has drawn scrutiny from members of both parties in Congress.
All people with Type 1 and some with Type 2, whose body doesn’t use insulin the way it should, need the drug,
More than 30.3 million people in the U.S. have diabetes and 90% to 95% of them have Type 2 diabetes, according to the 2017 National Diabetes Statistics Report. Unlike people with Type 1 diabetes, Type 2 diabetics can often lessen their dependence on insulin through healthier diet and exercise.
“As extreme as it sounds, if I go without insulin I will die,” said Anthony Myer, 29, who has Type 1 diabetes.
He pays $240 for a single vial of insulin after insurance, which lasts him about nine days.
Myer said he’s forced to carefully budget his money to buy insulin. He lived at home with his dad until a week before he turned 29 because he didn’t have enough money after his monthly insulin costs to live on his own.
“You can’t choose anything else over insulin,” said Myer, the youth and family program director at the Central Ohio Diabetes Association.
Insulin was discovered in 1921 by orthopedic surgeon Frederick Banting and medical student Charles Bset, from the University of Toronto. The pair later sold the insulin patent to the university for $1. The university couldn’t produce enough insulin to meet the need and teamed up with pharmaceutical companies in the United States and abroad.
Today, there are three insulin manufacturers: Eli Lilly, Novo Nordisk and Sanofi. The manufacturers make the drug, set the price and negotiate with pharmacy benefit managers, the companies hired by health insurers to manage prescription-drug benefits for beneficiaries.
“It comes down to pure greed,” Patterson said. “They are lining their pockets. They are making a profit.”
When questioned about their costs, the insulin manufacturers told The Dispatch that the majority of patients don’t pay the list price for the drug.
The list price of Eli Lilly’s most commonly used insulin is currently $275 and was $99.65 in 2009, Eli Lilly spokesman Greg Kueterman said in an email. He said the company’s last list-price increase was in May 2017.
“In the vast majority of cases, people pay far less than list price at the pharmacy,” he wrote.
The net price of Sanofi’s insulin medications has declined by 25% since 2012, but the average out-of-pocket costs for patients with private health insurance and Medicare has gone up 60%, Jon Florio, a Sanofi spokesman, said in a statement. High-deductible insurance plans mean patients have to pay high out-of-pocket costs.
“What a patient is paying as their out of pocket cost should be what we’re focusing on rather than the list price,” Florio said in a statement.
Officials with Novo Nordisk acknowledged more patients are forced to pay list price, but not the majority.
“We know that even for some patients with health insurance, high deductibles and restrictive formularies can make insulin unaffordable,” a company spokesperson said in a statement.
Lawmakers in Ohio are trying to make insulin more affordable.
State Rep. Dr. Beth Liston, a Dublin Democrat, introduced a package of bills about a month ago focused on insulin pricing.
The Insulin Affordability Act would cap the price of insulin provided by health plans at $100 for a 30-day supply. House Bill 385 would require the Ohio attorney general to give recommendations about insulin pricing in the state.
“We need more transparency and we need to have (pricing) looked at more clearly,” Liston said.
Both bills have been referred to the House Health Committee.
Some diabetics ration their insulin as a way to prolong their supply.
Rationing led to the death of Patterson’s sister-in-law Meaghan Carter. She was diagnosed with Type 1 diabetes in 2000 and, in 2014, had her first brush with diabetic ketoacidosis, a condition in which blood sugars get too high and the body’s blood becomes acidic. It can be fatal in just hours or a few days.
“I think at that point she was starting to ration off and on,” Patterson said.
Carter lost her nursing job in June 2018 and her health insurance along with it. As a result, she was paying $900 a month for three vials of insulin that lasted her about a week each, Patterson said.
On Christmas Eve, Carter started throwing up and showed symptoms of diabetic ketoacidosis.
When her roommate came home from work on Christmas, she found Carter on the couch but assumed she was sleeping and went to bed.
The next morning, the woman found Carter on the couch in the exact same spot. Carter had died on Christmas with her presents still under the tree.
When Carter’s family cleaned out her apartment, they found an empty vial of insulin and another that had barely been used, Patterson said.
“She was definitely rationing everything,” Patterson said. “I gotta get this fixed because I can’t lose somebody else.”