After collapsing at his job and spending a week in a hospital, Thomas Strathmann of Bozeman, Mont., left with a diagnosis of type 1 diabetes and two boxes of insulin. He was told they would last “a few days,” he remembers. The next box would cost between $500 and $600. He was 28 and uninsured.
An emergency mental health clinician, Strathmann earned just enough to not qualify for Medicaid and says he couldn’t afford a plan on the Healthcare Marketplace (“Obamacare”). He turned to the same local nonprofit health service to which he referred clients. The organization offers single-use insulin “pens,” charging on a sliding scale according to income. For the last three years, he’s bought boxes that contain five pens each at $10 a box. The supply is supposed to last five days. He is unsure what he would do if the charity closed or he became ineligible for the program.
“I can’t describe this situation where you are required to have something to live and can only have as much as it as you can get at any one time,” Strathmann says.
Out of concern that something will interrupt his supply, he has started skipping doses and stockpiling pens.
Who’s Rationing Insulin?
One of four people with diabetes in America have rationed insulin, according to a Yale University study released in December. The cost of diabetes medicines has increased exponentially in the last 20 years, forcing patients to struggle with out-of-pocket expenses. One study, published in JAMA, showed that the price of insulin as charged at the pharmacy tripled from 2002 to 2013.
It’s continued to skyrocket since. A study from the Health Care Cost Institute, published last month, measured a spike from 2012 to 2016 in terms of how much is spent on Americans with type 1 diabetes (by insurance companies, governments, or patients as a total). It doubled from an average of $2,864 per patient in 2012 to $5,705 in 2016.
To cover these costs, some diabetics are skimping on insulin. “I hear about it once a week,” says Kevin Codorniz, M.D., medical director of diabetes treatment at Loma Linda University Health in Southern California. “Their share of cost is so high that it’s prohibitive for them” to take the amount prescribed.
David Nathan, M.D., director of the Diabetes Center at Massachusetts General Hospital, says he’s heard from patients struggling to afford $300 to $500 a month in out-of-pocket expenses. Some tell him they skip dosages. “I assume [others] are embarrassed to tell me,” Nathan says. It’s the prideful or shy patients he worries most about.
What Happens When You Skip Insulin Doses
The results of insulin rationing can be deadly. In February of 2017, Shane Patrick Boyle died of diabetic ketoacidosis in Arkansas, shortly after aging out of the Obamacare provision that allowed him to stay on a parent’s insurance plan until age 26, and after failing to raise enough for a month’s supply of insulin on GoFundMe. In another publicized case, Alec Smith, a Minnesota restaurant manager with type 1 diabetes, also departing his parents’ insurance plan at 26, died while looking for affordable insurance options.
Dr. Codorniz warns that under-utilizing insulin can cause a diabetic coma, and can have dire long-term effects, including kidney disease, infections and risk of stroke and amputations. “Most people don’t know,” he says. “They think they’re too young [for rationing] to hurt them. It’s ten years down the road when you these complications concern you.”
Insulin has been used since the 1920s and has been produced in roughly the same way for decades — harvesting it from an animal pancreas or using recombinant DNA techniques to create and extract it from bacteria. There have been some new products for diabetes, such as insulin pumps and longer-lasting drugs, but most of these are for unique or severe cases or people with high-quality health coverage. Most patients use basic forms of insulin that have existed for decades, according to Dr. Codorniz, with pharmaceutical companies making tweaks to the medication or delivery process to maintain patents.
What Drug Companies Are Doing
Some patients have blamed drug manufacturers for inflating the prices. In 2017, people with diabetes filed a class action lawsuit against Sanofi, Novo Nordisk and Eli Lilly in a Massachusetts court, accusing the three companies of working in “lock step” to increase prices of their nearly identical products. In 2018, the attorney general of Minnesota filed suit against the same three companies, accusing them of raising insulin prices in cahoots.
Eli Lilly has responded to the fury by manufacturing an “authorized generic” version of their insulin Humalog for $137, half the price of its usual cost and opening a “solution center” where patients can call to ask about lower-cost options.
Dr. Codorniz warns it’s “a complicated matter; it’s not just the drug companies being greedy.” He said many have offered low-income and underinsured patients rebate coupons, but these rebates often have the effect of driving up copays for consumers.
The American Diabetes Association has spoken out against the rise in costs and made policy proposals, including streamlining the process to get Food and Drug Administration approval for generic versions of insulin medications, guaranteeing pricing transparency, and increasing access all around. The organization has also created a guidecontaining suggestions and resources for anyone struggling to afford insulin.
Dr. Nathan says it’s time for the government to implement cost controls. “There are no adults in the room,” he says. “There is no one telling the pharmaceutical industry, ‘You can’t do what you want.’”
For Thomas Strathmann, there is a stark before-and-after the day he collapsed due to diabetic ketoacidosis. He has transitioned to less stressful work, cashiering at a ski shop and doing landscaping. He says he’s careful not to earn too much money. “It’s this Catch-22 where if you earn too much, you can’t get insulin, but if you earn too little, you can’t afford to eat.”
He used to enjoy trail running and other mountain sports. Now he goes on an occasional mental health walk. The biggest change is a constant state of anxiety over his health. “Experiencing this on a daily basis is crippling,” he says. “It’s on your mind from when you get up to the time you get to sleep.”
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