SALT LAKE CITY — A Type 1 diabetic can’t go more than 72 hours without insulin, yet many of them are forced to ration their life-sustaining drug because of the skyrocketing costs associated with the disease.
“Many of us have lost homes, cars, lived on the streets, dealt with growing stress and anxiety, marriages have been ruined and life goals set aside,” said Mindie Hooley, who years ago realized her young son had been using just a third of his prescribed dose of insulin to spare his family the financial hardship of paying for it.
“As a mom, all I have ever done is try to protect my son,” she said. “The very thing my son needed the most, I could not give him.”
Since the 1990s, the cost of insulin — which is necessary for the human body to regulate blood sugar levels — has increased over 1,200%, though the cost of production remains under $10, according to a nationwide diabetic advocacy group, T1 International. The nonprofit group estimates one in four patients with Type 1 diabetes has had to ration their insulin due to cost, and many of them have died because of that.
By no fault of their own, more than 1.5 million people in the United States have been diagnosed with the autoimmune disease that is Type 1 diabetes, according to the Diabetic Research Institute Foundation.
Without insulin, Hooley said patients can suffer illnesses, become blind, lose limbs, and die from a complication called diabetic ketoacidosis.
“It can happen to anybody at any age,” said Jennifer Draney, 40, of South Ogden, who was diagnosed earlier this year. The devastating news came two years after her teenage son had been given the same life-changing diagnosis.
“I haven’t had to ration it, but I’ve done ridiculous things to get my insulin,” she said, adding that paying $300 per vial per month for both herself and her son has all but done them in, even causing the family to recently file bankruptcy.
“We’re literally sinking,” Draney said. “If life is a human right, then insulin is, too.”
As a T1 International State Chapter, Hooley led several dozen Utahns in a moment of silence at the corner of the state Capitol on Saturday, remembering all of the Americans who have died without the insulin they need. Those gathered also hope to hold the three pharmaceutical companies — Eli Lilly, Sanofi and Novo Nordisk — “accountable for their greed,” she said.
“This is inhumane,” Hooley said. “We need affordable insulin now.”
There is no cure for insulin-dependent Type 1 diabetes, but it can be managed. It is less common than Type 2 diabetes, which is brought on by a person’s lifestyle and it requires lifelong vigilance.
Courtney Darnell, 23, said she limits her carbohydrate intake to avoid needing as much insulin throughout the day. She also goes without trendy new clothes and makeup because the majority of her income goes to insulin. She has no savings and uses a calculator at the grocery store to know how much food she can afford.
“I am forced to pay for a lifestyle I did not ask for and that I did not want,” she said Saturday. “None of this is fair. I’ve had to sacrifice so much. It is not my fault that I have diabetes.”
She fights with pharmaceutical companies and pharmacies monthly to get her insulin, calling it “a really horrible dilemma.”
Hooley said the selfless Utah community of diabetics have become family to her.
“You all know what it is like to fight to stay alive,” she said. “You are warriors and truly, my heroes.”