Kristen Whitney Daniels was 15 years old when she was diagnosed with Type 1 diabetes — a lifelong disease.
“As if I wasn’t awkward enough as a sophomore in high school, I also acquired this chronic illness that completely upended my life,” she said.
It meant that her body no longer naturally produced the hormone insulin, which helps regulate a blood sugar called glucose. So for the rest of her life, Daniels, of Shelton, will have to rely on manufactured insulin, which usually requires a prescription.
But the price of insulin has nearly doubled over the years, putting it out of reach for patients struggling to afford care, causing some to even make risky and deadly decisions like rationing medication.
Advocates call the situation a crisis, putting people with diabetes in life or death situations. As states and legislators in Washington try to lower sky-high health care and prescription drug costs, Daniels, chapter leader of Connecticut #Insulin4All, said people need immediate relief and help, just to simply survive.
“A lot of people think diabetics are choosing between a new pair of jeans and insulin, or going out to eat and insulin,” Daniels said, “but I had to choose between being homeless and insulin, and I’ve had to make really difficult choices that no one should have to make.”
All people with Type 1 diabetes, an estimated 1.25 million Americans, and some people with Type 2 diabetes need multiple injections or infusions of insulin every day. They use glucose monitors to figure out dosages, and sometimes an automatic insulin pump for delivery.
But all of the medication and related health care services come at a steep price, even for people with health insurance who may need to pay out a large deductible first before they see coverage.
A January report from the Health Care Cost Institute, a non-profit research organization, found that insulin prices rose significantly between 2012 and 2016 — the average amount a patient spent in a year jumped from $2,864 to $5,705.
Children and young adults may be able to get a lot of those diabetes costs covered through their parents’ insurance plans, but the financial burden may become too great if they have a cheaper, but weaker health insurance plan as an adult. That’s what happened to Daniels when she turned 26.
“It got to a point that I was down to my last two vials and I started to ration my insulin, because I really didn’t see another choice,” she said, acknowledging that people have died doing this.
Jean Fuglesten Biniek, a senior researcher and co-author of the report, said there’s an argument that money from increased prices help manufacturers develop and create new and better medications.
But among the three dominant drug companies that make insulin for the U.S. market, Biniek said the products didn’t show enough change to account for the price hikes.
“In many cases, the exact same vial of insulin or the exact same insulin pen is twice as expensive in 2016 as it was in 2012, and that to me is shocking,” she said.
U.S. Sen. Richard Blumenthal, who spoke to advocates in Hartford last week, said abuse of the patent system has also contributed to the higher prices. He said drug companies have created monopolies on patents in order to stop generic competitors from making insulin at a cheaper price.
He’s currently working to pass a bipartisan bill that would prevent that from happening any further. Dr. Kathryn Nagel sees this as one possible systematic solution, but knows patients and families need help now.
“When we discharge people from the hospital and we tell them they need this certain medication and we find out they can’t get it, there’s no words for that,” she said, sitting at her home in New Haven. “I don’t know what to do. That shouldn’t happen, not in this country.”
Nagel is a resident physician at Yale New Haven Hospital. She’s also lived nearly her whole life with Type 1 diabetes.
While she called her diagnosis as an infant shocking for her family, her parents adjusted and she was able to do what most kids could do. She regards herself as lucky for growing up with her father’s health insurance plan, which covered mosts costs.
But when she got older, even her choice of medical school was influenced by her disease and concerns over the costs of care.
“It was a question that I would ask on interviews: What is your insurance plan like? What’s your deductible, what’s your copays?,” Nagal said. “It’s not just, how good is this school, are they going to provide me the education I need? It was also, are they going to provide me with the health care I need?”
And now as a provider, Nagel sees the difficulties of care in a new way. She recently had an 11-year-old patient diagnosed with Type 1 diabetes, and couldn’t find all the medication and supplies the little girl needed at a single pharmacy — instead, the family would have to go to three.
“We should be able to get the supplies we need to take care of ourselves and I couldn’t do this — I, as an MD with years of education and a diabetic, I know how to navigate the system — I couldn’t get this done,” she said. “And I was going to discharge this girl into the world to fight this battle for the rest of her life, and that felt wrong. It’s just the reality we live in right now.”
