The rising cost of insulin was not on Stacey Roman's mind when her son Conner almost slipped into a diabetic coma last year, but now that she has learned the condition is treatable, the cost of treatment itself is her biggest concern.
"I understand you have a product and you need to make some sort of money out of it," Roman said about the cost of insulin. "But it only costs a fraction of what they’re charging."
The price for insulin between 2002 and 2013 nearly tripled for the 7.4 million Americans dependent on the hormone, according to the American Diabetes Association – a trend Roman said makes her worry for the financial future of her family. She is not alone, as 83% of Americans believe the cost of treatments makes quality care unaffordable, according to a Pew Research Center survey conducted in 2018.
'An awful disease, but manageable'
It was one of the first days of 2018 that felt like spring. The white oaks and Virginia blue bells of DeKalb County were flourishing, but 8-year-old Conner Roman was not.
Stacey, Conner's mother, remembers thinking it was the flu. She said he refused to eat and after a couple days grew too tired to leave bed. That is when she and her husband, Craig Roman, rushed Conner to Northwestern Medicine Kishwaukee Hospital, where they discovered his blood sugar was more than five times the normal level and nearly high enough to cause a coma.
Doctors diagnosed Conner with Type 1 diabetes, a condition where the body loses the ability to make insulin. According to Northwestern Medicine, insulin is a hormone that allows your body to use sugar from food for energy and helps to keep blood sugar level from getting too high or too low.
"When we first heard it, we thought 'oh my god he's not gonna make it' until we got a little more education," Stacey said. "It is an awful disease, but it is manageable."
However, Stacey said managing Conner's treatment has become more difficult as the cost of life-saving insulin continues a nearly 20-year increase.
In the beginning, Stacey said the insulin was covered by her husband's employer-sponsored health insurance. Co-payments for the $825-per-vial insulin needed to keep Conner's blood sugar in check were $20 every month. With a combined annual income of $85,000, payments for the $5,000 pump needed to deliver the insulin were also manageable then, she said.
That was before Craig lost his job as a funeral home director in the spring of 2019, the silver lining of which was Conner's insulin being covered in full by Medicaid. Without Medicaid, Stacy estimates the family would have to spend almost $10,000 a year on insulin and supplies with a $15,000 annual income.
"It’s not something you can ration and it’s not something he can do without," Stacey said.
Rationing and traveling abroad
Some locals like DeKalb resident Druw Reish have raised money to help offset medical costs associated with their conditions. Reish was diagnosed with Type 1 diabetes as a child and spent time earlier this year in the intensive care unit at St. Anthony Medical Center in Rockford due to diabetic ketoacidosis – a buildup of acids in the blood that can happen when blood sugar is too high for too long.
To help himself and others afford insulin and other supplies necessary to combat the condition, Reish started a charity called Drummers for Diabetes, an organization that raises money through rock performances and merchandise sales.
Others have tried rationing their medication to make it more affordable. Wendell Malalis, an endocrinologist at Northwestern Medicine, said he has seen an increase in this practice, which he says puts their lives at risk.
"I have seen it more and more as the insulin prices do go up," Malalis said. "I think it's a dangerous practice especially for insulin-dependent diabetics or the ones who don't have any insulin at all."
Nicole Smith-Holt, an advocate from Minneapolis who recently traveled to Canada to purchase cheaper insulin, said her son, Alec, died in 2017 at 26 after trying to ration his insulin because it was too expensive.
She purchased a bottle of Humalog, the same kind of insulin Conner Roman uses, for $30 in London, Ontario, and left some of her son's ashes at Banting House National Historic Site, where Sir Frederick Banting discovered insulin in 1920.
"He couldn't afford to stay alive any longer," Smith-Holt said. "The pharmaceutical companies are under the impression that the American people can bear these prices, but they actually can't. People are dying."
What's the cause?
According to the American Diabetes Association, the reason for high prices can be found in the production and delivery of insulin to patients – from manufacturers to wholesalers, insurers, pharmacy benefit managers and pharmacies.
Insulin manufacturers and pharmacy benefit managers have made recent attempts to lower costs. Insulin manufacturer Novo Nordisk has recognized the affect of high insulin prices and introduced measures to cut Novolin down to $25 per vial by joining cost savings programs run by pharmacy benefits managers like CVS Health.
Eli Lilly, another insulin manufacturer, introduced an insulin option in March that will have a list price 50% lower than the current Humalog list price.
Local pharmacies like Lehan Drugs in DeKalb have also made efforts to lower insulin costs for those who are uninsured. Owner Ann Lehan said the DeKalb pharmacy works with Greater Elgin Family Care Center to lower the cost of insulin for the uninsured.
Through the program, an uninsured individual could purchase Humalog for as low as $10.10, Lehan said.
For Stacey Roman, those efforts are not enough. What needs to change is federal legislation that will regulate insulin price increases, she said.
There is precedent for the regulation. Colorado passed a bill in May that caps the total cost of insulin for individuals at $100 per month, and is the first state to do so.
Federal legislation is also in the works. U.S. Senator Tina Smith, D-Minn., introduced a bill June 27 that would establish state insulin assistance programs, require manufacturers to contribute to such programs, penalize manufacturers for a history of excessive price increases, and lessen exclusivity periods for insulin from 12 years to seven years to bring generic insulin to the market faster.