By Elizabeth Cohen and John Bonifield, CNN
Dillon Hooley loves his parents, so when he heard last year they were struggling to pay for his insulin, he wanted to help out any way he could.
The high school senior came up with an idea: He would cut back on his insulin by about a third.
Dillon, who has type1 diabetes, is supposed to keep his blood sugar levels between 130 and 150. After he started rationing insulin, his levels jumped as high as 300.
He knew that was dangerously high, and in the back of his mind he worried he might go into a diabetic coma.
“I wasn’t thinking right, but my parents work so hard to give me what I need, and I didn’t want to put more financial stress on them,” said Dillon, now 18.
Skyrocketing insulin prices
From 2012 until 2016, the cost of insulin for people with type1 diabetes nearly doubled, from $2,864 per year to $5,705, according to a study out this month from the Health Care Cost Institute, a nonprofit research institute.
The cost of Dillon’s insulin was much higher. He was insured last year through his father’s job at a steel mill in Utah. When Dillon started rationing his insulin, the mill had just switched to an insurance plan with a high deductible, which meant his parents would have to pay $5,000 out of their own pocket before the insurance would kick in.
Under this new insurance, the Hooleys had to pay $800 a month for Dillon’s insulin, instead of the $60 a month they’d paid under their old plan.
Preoccupied with his family’s financial woes, Dillon’s father, Jason Hooley, was at work and didn’t notice that a 400 pound steel beam was about to fall on his middle finger. He lost half of his finger and could only do light work at the mill. With his hours cut back, he earned $300 less a week.
That’s when Dillon secretly started cutting back on his insulin. His parents found out when he went in for a regular doctor’s appointment and the doctor was shocked at his high blood sugar levels.
Dillon’s father then switched jobs twice to get better health insurance. Now the family pays $160 a month for his insulin, which is better than $800 a month, but still a financial struggle for the family of five. Dillon has gone back to taking his full doses of insulin under his mother’s watchful eye.
Mindie Hooley cries when she thinks about what her son did to help his parents.
“He’s such a selfless person,” she said. “My heart just broke, because you want to do everything to protect him, but instead he was protecting us.”
Promises from lawmakers
Some people with diabetes haven’t survived the rising price of insulin.
In 2017, 22-year-old Antavia Worsham from Cincinatti died when she couldn’t afford her insulin.
Her mother, Antroinette Worsham, testified Tuesday on Capitol Hill to the House Oversight and Reform Committee. A Senate committee also held a hearing Tuesday on rising drug prices.
“This is unacceptable, and I intend to specifically get to the bottom of the insulin price increase,” Sen. Charles Grassley, chair of the Senate Finance Committee said at the hearing.
The pharmaceutical industry says patients with insurance, like the Hooleys, shouldn’t have to pay full price, as insulin makers give deep discounts to insurance companies. “These savings are often not shared with patients whose out-of-pocket costs continue to soar,” said Holly Campell, spokeswoman for the Pharmaceutical Research and Manufacturers of America.
A spokeswoman for the insurance industry, however, said that’s not true. “Savings from rebates go directly to customers,” said Cathryn Donaldson, a spokesman for America’s Health Insurance Plans.
In December of 2016, Sen. Bernie Sanders of Vermont and Rep. Elijah Cummings of Maryland asked the Justice Department and the Federal Trade Commission to investigate whether insulin manufacturers had colluded on drug prices.
In October, the Minnesota attorney general’s office filed a lawsuit against insulin makers alleging illegal pricing practices. A lawsuit filed by patients with diabetes in Massachusetts accusing insulin makers of price fixing is pending in federal court.
While drug and insurance companies point fingers at each other, the Hooleys are still struggling to pay the $160 a month for Dillon’s insulin, along with other supplies such as his test strips.
Paying for his insulin has made it impossible for Dillon’s parents to save up enough to buy him a glucose monitor that sets off an alarm if his blood sugar gets too low while he sleeps.
They know he needs one. Last month his mother checked in on him while he was sleeping and saw he didn’t look right. She woke him up and gave him some honey, but he was so confused from his low blood sugar that instead of eating it he smeared the honey all over his body.
An ambulance brought him o the emergency room, where was stabilized and released.
After graduating from high school last May, Dillon wanted to go to school to become a nurse or a respiratory therapist. Instead, he got a job at the factory where his father works to help pay for his insulin and to save up for school.
He looks back on his two and a half months of insulin rationing, and knows he made the wrong choice — but it was a choice borne from love.
“My parents do so much for me, and it was so hard to watch them struggle financially,” he said. “I felt helpless not to be able to contribute.”