Chris Pickering has gone without car insurance, canceled family vacations, worked overtime and sold off personal belongings in order to afford insulin.
“We’re all held captive by the cost, because without it, we don’t live,” he said.
Pickering, a father of four, has Type 1 diabetes.
The price of the of the human insulin analog he needs to survive has gone up more than 500 percent over the past 15 years.
There is no generic insulin. A handful of drug makers make minor changes to the analogs in order to obtain new patents, constantly increasing prices along the way.
Sitting at his kitchen table at his suburban home near Oklahoma City, Pickering shows me a small clutch of empty insulin vials that represent a three-to four-month supply. It costs nearly $4,000 for these dozen tiny vials he can fit into the palm of his hand.
Pickering’s insurance covers two vials a month, but he really needs three to live a comfortable, somewhat normal life.
At times, he’s even restricted his food intake in order to to stretch out his insulin supply. A 10 mL vial of insulin costs him about $300 out-of pocket.
“If you’re like me and you sit in that kind of lower middle class area, you make too much to qualify for any true assistance, but you don’t make enough to acquire everything you need,” he said.
At one point, Pickering was working at a $60,000 a year job. He estimates his take home pay was about $5,000 a month, but the insurance didn’t cover any diabetes supplies. With his $1,400 a month insurance premium, as well as out-of pocket costs for test strips, sensors, insulin and other diabetic supplies, Pickering’s net pay was really about $300 a month.
“That nearly ended our marriage,” he said wife Madeline Pickering. “…Our credit was shot and we’re still pulling ourselves out of it. It builds resentment between people.”
Pickering is now a stay-at home dad. He says he’s turned down four jobs this year because the insurance costs made it more economical to stay home instead of paying for childcare.
He and his wife purchase their health insurance through an exchange under the Affordable Care Act. Their children are covered under SoonerCare, Oklahoma’s Medicaid program.
Edmond resident Clayton McCook’s 10-year old daughter Lily was diagnosed withType 1 diabetes diabetes in 2012.
McCook makes a comfortable living with good benefits as an equine veterinarian, but says Lily’s care still costs about $20,000, out-of-pocket, each year.
“She has no choice — it is literally life or death. If she doesn’t get insulin, she will died in a matter of days,” McCook said.
The cost of synthetic insulin has roughly doubled since Lily was first diagnosed at age 3.
“I just worry how these prices will affect her ability to do whatever she wants to in life and that’s always going to be a burden for her,” McCook said. “We are literally paying to keep ourselves alive.”
Pickering and McCook are working to raise awareness about the price of insulin in Oklahoma with the nonprofit T1International.
He had hoped to talk with state lawmakers about the issue during an interim study at the Oklahoma Legislature this month on insulin prices and health care policy issues, but the study was abruptly canceled this week.
Rep. Forrest Bennett, D-Oklahoma City, who had asked for the interim study, said he asked Oklahoma Speaker of the House Charles McCall’s office to reschedule the study, but was denied.
McCall’s press secretary Jason Sutton said in an email that Bennett’s study was combined with another study, which was recently withdrawn by the member who requested it.
“However, there are other avenues for Rep. Bennett to hold his meeting outside the interim study process, whether in his district or at the Capitol,” Sutton said.
“It’s frustrating, but it doesn’t change the fact that I intend to file legislation to look at how we can address this issue,” Bennett said.
Legislation Bennett is considering could include updates to diabetes coverage requirements for Oklahoma insurers, he said.
One recently published study found access to diabetes medications increased in states that expanded eligibility for Medicaid among low-income adults under the Affordable Care Act. Oklahoma is one of 17 states that have yet to expand Medicaid.
McCook fears work requirements that Oklahoma enacted earlier this year for some adult Medicaid recipients will further hinder access to diabetes care in the state.
“I think it’s another one of those short-sighted mean spirited attempts to shame people,” he said.