Increasingly over the past decade, people with diabetes such as Price find themselves saddled with hefty bills for the insulin they need to survive.
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The high cost of insulin for Jessica Price, diagnosed with type 1 diabetes mellitus as a child sometimes leaves her with difficult life choices, Wednesday, Sept. 6, 2017.
For the first two decades that Jessica Price had diabetes, she never worried about the price of her insulin and supplies, because her mother’s insurance covered the cost. Then she switched to her employer’s high-deductible insurance plan.
All of the sudden, she was facing bills of a few thousand dollars each time she went to the pharmacy to purchase her supplies for the next three months.
“It’s never a question of if I’m going to hit my deductible, but a question of how quickly can I hit it,” said Price, who works for a nonprofit and has found herself having to borrow from her parents to help with the bills. “If I don’t hit my deductible until June or July, I start to worry.”
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Increasingly over the past decade, people with diabetes such as Price find themselves saddled with hefty bills for the insulin they require to survive.
Of the 6 million or people in the United States who depend on insulin, about 1.25 million of those are people who have Type I diabetes, a condition in which their pancreases don’t produce the hormone insulin, according to the American Diabetes Association. The remainder have Type II diabetes and take insulin to help out their bodies, which do not produce sufficient insulin on their own.
Historically, obtaining sufficient insulin did not require those with diabetes to dedicate entire paychecks to the endeavor. But the rise in high-deductible insurance plans, coupled with a steadily increasing price of the medicine, has left many scrambling.
“It’s an escalating crisis,” said George Huntley of the National Diabetes Volunteer Leadership Council and a longtime diabetes advocate, who was diagnosed with Type I diabetes in 1983 at age 20.
Research suggests that 57 percent of people who use insulin in the United States face paying list price for their supply at some time during the year, said Huntley, who is based in Indianapolis.
To raise awareness of the problem, a group of advocates plan to gather Saturday in front of headquarters for Eli Lilly and Co., one of three companies that manufacture insulin. Future protests are planned at the headquarters of the two other companies.
“We think it’s just high time that’s there more action and more pressure,” said Elizabeth Rowley, founder of T1International, a group that advocates for people with diabetes around the world and one of the organizers of the protest.
The protesters are calling upon Lilly and other manufacturers to be transparent about how much it costs to make insulin, how much they earn from the drug and to lower the price of the drug.
One of the newer types of insulin saw 24 price increases from 2001 to 2014, going from $44 to about $300, said Dr. William Herman, professor of internal medicine at the University of Michigan, who has written on the changing cost of the drug.
Lilly officials acknowledge that this is a real issue that touches people on a daily basis. But they say the answer may not be as easy as their simply lowering the price of the drug and does not rest on their shoulders alone.
“It’s a complex problem to solve,” said Mike Mason, vice president of Lilly Diabetes. “When you take a look at our prices, our list prices have gone up, but our net realized prices have gone down.”
One factor behind the rising costs has been the arrival of a next generation of insulin, so-called analog or synthetic insulin that could one day replace its less expensive predecessors, human or animal insulin. While previous-generation insulins remain on the market, the newer drugs do a better job of keeping blood sugar constant — the holy grail.
People with diabetes have taken several steps to ensure they have sufficient insulin. Some rely on samples from their doctor’s offices. Others use expired drugs. Facebook groups have arisen to connect those who have extra insulin with those in need. People living near the Canada border may go abroad to buy supplies.
Many, including Price, try to limit their use of the life-saving drug as much as they can.
“You start insulin rationing, which can be dangerous, but it comes down to: ‘I’ve got to make this insulin bottle last,’” Price said.
Simply lowering the price of the drug may not be the answer, many say.
Those on high-deductible plans, though, often have very different experiences in large part due to a complicated dance between pharmaceutical companies, insurers and third-party pharmacy benefit managers, who administer prescription drug plans.
Consider a drug with a list price of $100, Mason said. The company might offer a 70 percent rebate, which would lower the price to $30. If a patient has a traditional insurance plan, the co-pay might be $25 and the insurance company kicks in the remaining $5. The drug company receives $30.
High-deductible plans, in which employers aim to defray some of the money they spend on insurance, upend that equation. Now, the patient no longer has access to the rebate and has to pay the full $100. The drug company still gets $30 and now the insurer instead of paying $5 gets $70.
“Why has the list price risen? One of the biggest drivers is that they started playing this rebate game. (Pharmacy benefit managers) are not negotiating for lowest price, they’re negotiating for the rebate,” Huntley said. “Nobody cared until the patient starts paying list price at the cash register.”
In December, Lilly unveiled a plan to allow patients with diabetes to purchase insulin at a 40 percent discount on Blink Health’s online platform. Purchases made in this manner are done outside a person’s health plan and may not count toward annual deductibles.
But word about the program has been slow to get out, Lilly’s Mason said.
“We want to see this program get leveraged,” Mason said. “Some people that can benefit from the program aren’t aware of it and aren’t using it.”
Still, diabetes advocates do not want to stop at this solution. They call for more transparency across the system on the part of all the players, including the employers and pharmacy benefit management companies.
Huntley’s group has started a campaign to persuade employers to make insulin exempt from the deductible, like other drugs such as those to treat high blood pressure which sit on a preventive and maintenance list. Ensuring people have access to insulin could save money in the long term by helping to stave off more costly health emergencies, he said.
“If we can get enough of them to do it, perhaps that will become the normal plan design. I do believe there is a need to fix the transparency for the uninsured,” he said.
The one thing these patients can’t do? Forego insulin altogether.
That’s why Mike Hoskins, 38, will be traveling from his home in Detroit back to Indianapolis for Saturday’s protest. Diagnosed with diabetes in 1984 at the age of 5, Hoskins learned the hard way that high-deductible plans are not for diabetics. A few years ago, he went on such a plan for the first time.
All of a sudden, he faced an additional monthly expense of $700 for his insulin, about half of his mortgage payment. He made do by stretching his budget and with samples from his doctor. Now, he takes pains to ensure he never again winds up on a high-deductible plan that could force him to spend more out of pocket for insulin.
“When you’re living with Type I diabetes, you can’t go without it. It’s basically oxygen,” he said.
Call IndyStar reporter Shari Rudavsky at (317) 444-6354. Follow her on Facebook and on Twitter.