Tulsan Megan Quickle was diagnosed with Type 1 diabetes just short of her third birthday. Back then, a little over 30 years ago, the cost of the live-saving insulin she needed was pretty manageable.
Now her insulin costs $385 a vial â€” quadruple, she said, from 12 years ago â€” and while recently acquired health insurance helps, Quickle said sheâ€™s been in the same predicament as many uninsured and under-insured diabetics.
â€œThankfully, Iâ€™ve had a job,â€ she said. â€œbut Iâ€™ve still had to choose some months between a car payment or house payment and insulin.â€
Fittingly, Quickle acquired the insurance that saves her from those kinds of decisions through her new job with the Juvenile Diabetes Research Foundation.
And insurance helps. Eli Lilly, one of the three major manufacturers of insulin, says 95% of patients using its products pay $95 a month or less out of pocket, 90% pay $50 or less, and 43% pay nothing.
But for those at the margins â€” those without prescription benefits or who are insured but with high deductibles and co-pays â€” the impact has been staggering and even fatal. Most Type 2 diabetics can manage the disease without insulin, but Type 1 patients must have insulin or die â€” and a small but growing number of them nationwide are doing just that.
â€œDiabetes is an extremely stressful disease, even if you donâ€™t have to worry about money,â€ said Jasmine Ong, who has also lived with Type 1 for more than 30 years. â€œIf you do have to worry about money, itâ€™s really stressful.â€
Studies indicate diabetes patients can easily spend $1,300 a month or more on insulin and other supplies. Diabetics often have other health problems, too, including autoimmune conditions, neuropathy, artery disease leading to amputation and deteriorating eyesight.
The Affordable Care Act helped by requiring insurers to cover pre-existing conditions like diabetes. But many without employer- and government-provided coverage canâ€™t afford the policies on the ACA exchanges.
â€œItâ€™s always been a big deal to have health insurance,â€ said Ong, who works for a family medical billing service. â€œIâ€™ve done a lot of bending over backwards to maintain health insurance.â€
Three major insulin manufacturers â€” Lilly, Novo Nordisk and Sanofi â€” control the U.S. market. Between them, they make more than a dozen variations and combinations of insulin.
A few are relatively inexpensive. Walmart, for instance, sells Novo Nordiskâ€™s fast-acting Novolin ReliOn without a prescription for about $25.
Doctors and medical researchers, though, warn that ReliOn should not be used except as a stop-gap or under doctorâ€™s orders. It is considered ineffective and even dangerous for Type 1 diabetics because itâ€™s not as effective as more recent insulins at controlling blood sugar swings.
According to reports, the four most popular insulins have tripled in price over the past decade.
â€œBasically, weâ€™re being extorted for our lives,â€ said Ong.
A March BBC report found that average out-of-pocket diabetic costs in the United States are more than three times higher than in India, five times higher than in Japan and the United Kingdom and 20 times higher than in Italy. More and more, American diabetics are driving to Canada to stock up on insulin at $30 a vial, compared to upwards of $300 at home.
According to one report, the list price of Lillyâ€™s Humalog went from $21 per vial when introduced in 1996 to $92.70 in 1999 to $275 presently.
So why has insulin become so expensive?
State Rep. T.J. Marti, R-Broken Arrow, an independent pharmacist, attributes most of it to prescription benefit managers.
PBMs, as theyâ€™re known, negotiate prescription prices and control benefit networks for insurers and their clients â€” usually employers paying for employee insurance.
Marti and others argue that the largest PBMs leverage their large networks to get rebates from insulin manufacturers, who then raise list prices to recoup losses.
PBMs counter that it is ultimately the three major insulin makers that set the price for their products.
Congress began to take notice last year. Theyâ€™ve looked into the matter and grilled both PBMs and insulin makers about the increases.
In April, 2nd District Congressman Markwayne Mullin, a member of the House energy and commerce subcommittee on health, acknowledged the growing problem and said, â€œNo man, woman or child should ever be forced to ration or dilute their insulin because they canâ€™t afford their next monthâ€™s supply.â€
Fifth District Congresswoman Kendra Horn held a constituent forum on the subject three weeks ago, and Sen. James Lankford has taken an interest in drug pricing in general.
That may work out, at least in the short run, for people with insurance who are somewhat protected from the increases, but itâ€™s literally killing the uninsured, who often have to pay the full list cost.
Itâ€™s also tough on those with insurance but deductibles of $5,000 or $10,000 a year.
And even the best coverage may only delay the impact. Steadily rising costs eventually are passed along as higher premiums and â€” in the case of Medicaid â€” a bigger share of tax dollars.
SoonerCare, Oklahomaâ€™s version of Medicaid, spent $785 million on diabetes care for 53,000 patients in 2017, most of whom were elderly or disabled or both.
Nationally, spending for Medicare Part D insulin increased 840% from 2007 to 2016 as both the price and the number of people needing the drug rose steeply.
None of the recent deaths directly caused by insulin deprivation have occurred in Oklahoma â€” which is a little surprising. The state ranks high for diabetes-related deaths, the percentage of people diagnosed with that disease and the growth in that rate.
Oklahoma also has a large number of American Indians, who are genetically predisposed to diabetes.
Dr. David Jelley, a diabetes specialist with the University of Oklahoma-Tulsa, said both Type 1 and Type 2 diabetes are becoming more common and no one quite knows why.
Jelley said environmental factors may be triggering more diabetes. Heredity and medical advances likely play a role, too, especially with Type 1.
Until the 1920s, when a process for mass producing insulin was found, Type 1 diabetics rarely lived to adulthood. Now they live much longer and are more likely to pass along the trait to children.
Congress has failed to take significant action to date, but its displeasure may be having an impact.
Eli Lilly, the only U.S.-based insulin maker, says it has not raised its prices in two years. Recently it began selling an â€œauthorized genericâ€ version of its most-used product, Humalog, at half the $275-per-vial brand name price.
â€œThe demand (for insulin) is not about desire, about something you want,â€ said Ong. â€œItâ€™s a matter of need. People have to have it.â€
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