FORT WAYNE, Ind. (WANE) – Insulin prices have increased over the years, raising costs and concerns for diabetic patients who depend on the live-saving medication, and their families and loved ones. According to the American Diabetes Association, Type 1 diabetes affects nearly 1.9 million Americans, including about 244-thousand children, all who depend on insulin.

Statistics from the organization show the price of the medication nearly doubled between 2012 and 2016, with gross insulin spending per person increasing by $2,841.

What’s behind the increase? According to Stephen Habbe, Senior Vice President of State Government Affairs for the American Diabetes Association, a significant factor has been the current pricing and rebate system.

“Pharmacy benefit managers (PBMs) negotiate on behalf of health insurance plans and have substantial market power given they determine what prescription drugs will be covered by health plans. Consequently, manufacturers are incentivized to offer large rebates to the PBMs to be included on these prescription drug formularies. To be able to offer these large rebates, the manufacturers raise their list prices. Additionally, there has also been a lack of transparency among the various entities in the insulin supply chain (manufacturers, health plans, PBMs, pharmacies, and wholesalers), making it difficult to know exactly how different entities may have contributed to rising prices and how they’ve profited.”

Stephen Habbe, Senior Vice President of State Government Affairs for the American Diabetes Association

LIAM CALDWELL

For the past 4 years, Rachael Caldwell’s son, Liam, has depended on insulin to help control his blood sugar levels. He was diagnosed as a Type 1 diabetic just before his 6th birthday. Rachael noticed her son was urinating more frequently and drinking more water than usual. She was encouraged to buy a glucose meter which showed Liam’s glucose levels were high, and he was immediately rushed to the hospital.

“He had a blood glucose of 582 and they admitted him straightaway into the ER, and then we spent about three days at Parkview getting his numbers under control and getting a lot of education from the Parkview team,” said Rachael, who described the experience as a “whirlwind.”

Liam, now 9 years-old, wears a Continuous Glucose Monitor (CGM) which reads his blood sugar 24/7. Rachael and her husband are able to track his levels through apps on their phones, smart watches, and home devices. They also have a stockpile of supplies in their basement like transmitters, needles, test strips, sensors, and insulin.

Although she doesn’t remember exactly how much her family was paying for insulin when Liam was first diagnosed, Rachael says prices have increased quite a bit.

“Originally, the patent for insulin sold for like $1, and now we pay – if you see the pricing at the register – you know, it’s anywhere from like $200 to $400 for the pens of insulin. And then depending on your insurance, the copays can range, I’ve heard people paying, you know, zero copay up to I think we pay about $150 for one of his insulins,” said Rachael.

The Caldwell’s pay about $5,000 to $6,000 a year for insulin and everything else Liam needs. Plus, they have to travel to Indianapolis to see a pediatric endocrinologist. But the cost and travel expenses is not where their struggles end.

“The daily struggles I think most type one diabetics have, and probably parents, is just keeping their child in range because kids want to eat what they want to eat. I mean, you can’t really restrict their diet, so that’s probably the daily trouble and just not getting a full night’s rest because you’re worried about them and checking on them all the time overnight,” said Rachael, who added that while they haven’t experienced any scary, close calls with Liam, it is always concerning when Liam’s numbers are too high, and when they’re too low.

Rachael can’t help but worry about her son’s health, and the future cost of the medication that his life depends on.

“I worry about him when he’s older, when he has to have a job and he has to pay for it on his own. That’s always in the back of our mind, is later on in life what’s the cost going to be when he’s 18? I mean, that’s eight years away and it keeps on going up. What’s it going to be then?” she said.

Rachael encourages people to be aware of the symptoms of Type 1 diabetes, and notes that having good insurance is key when you have a type one diabetic.

She also adds this piece of advice:

“Don’t let the insurance decide for you what your child needs. You and the doctors know what your child needs. Insurance companies will try to determine what your child gets. They’ll deny things and you have to fight you have to, like, call them and appeal and file grievances,” she said. “Just fight for your child and be their advocate.”

TISHELLE JACKSON

Tichelle Jackson found out she was a Type 1 diabetic in 2020 after visiting her grandfather, who is also diabetic, in Las Vegas. She hadn’t felt well during the trip, and she was diagnosed once she returned to Fort Wayne.

“I knew I’d be on insulin for the rest of my life,” she said.

Tichelle was still in nursing school when she was diagnosed, and was a single mother raising her young son. At one point, she had to choose whether to buy food, or buy her insulin.

“That’s not a decision anyone should have to make.”

In the relatively short amount of time since her diagnosis, Tichelle has noticed an increase in prices, including for long-acting insulin pens she buys as a backup for her insulin pump.

Currently, she wears an insulin pump and a CGM, plus she needs the main medication: insulin. All of that runs her about $400 every few months, with insurance. Without Insurance, that number is close to $1,000.

Tichelle can afford her medication with a steady income, but she knows not everyone is as fortunate.

“Although I am blessed that I can afford it, I know people aren’t and that people will be me when I was in school, or they’re not in school and they got diagnosed and that’s why they don’t, you know, they can’t go and buy it,” she said.

If prices continue to increase, Tichelle may need to make serious changes, and that’s a scary thought.

“I’m gonna have to get another job because I mean I still have to pay my rent, pay for my car, pay for my son,” she said. “It should just be free. Your body makes insulin for free, at some point mine just decided to stop and that’s not my fault.”

She also worries about her son, and the chance that he could be diagnosed in the future as the disease is believed to involve both genetic and environmental factors.

“I could save money now and prepare for that, but that’s not living.”

ZOEY SHELTON

Paulding, Ohio teenager Zoey Shelton was diagnosed with Type 1 diabetes when she was 11. She’s now 17 and on an insulin pump and using a CGM.

“I don’t want to live with this. I would never wish anyone to have diabetes, it’s honestly a great struggle on my life,” said Zoey, who has drawers and tubs full of her medical supplies.

Zoey’s mother, Mandy Shelton, is actively fighting for lower insulin costs. In fact, she had planned to march in Washington, DC in support of the Affordable Insulin Now Act, but the pandemic derailed those plans. Now she circulates a call to action from the American Diabetes Association asking people to share their own stories and struggles, and write their senators encouraging them to support the legislation.

With insurance, Mandy pays about $140 for one 10 milliliter vial of insulin, and Zoey needs two vials per month. Without insurance, the vials cost about $300. In addition to her insulin, Zoey’s pumps, sensors, and extra supplies can run them anywhere from $75 to $300 dollars. The Sheltons also have to buy emergency insulin pens in case of emergencies.

“That has to be replaced every couple of years and my out-of-pocket costs for that was $300. The school requires that she has two of them – one for her to carry and one for the school to have at all times,” Mandy said. “We fortunately only ever had to use it one time, but I have all these other ones that are expired, just sitting around, that we’ve never had to use thankfully, but at the same time that’s thousands of dollars down the drain.”

Mandy says the thousands of dollars the family spends on insulin and other supplies every year is money that could go toward diabetic camp for Zoey or for her college funds.

“That’s money that we could be spending on books that we’re spending on her medication. And I know she worries about that, too. As an adult, when she’s an adult, she’s heard me talk about it – the cost. And I think she worries, too, you know, when she’s not on my insurance or if anything happens to my insurance, what are we going to do?”

Mandy says she’s more “action” than “talk” and that’s why she’s pushing for the passage of the Affordable Insulin Now Act, which would cap the out-of-pocket costs for insulin at $35 for people with commercial insurance, group health plans, and Medicare. A handful of states have passed laws capping insulin prices, but Indiana and Ohio are not included.

All three mothers agree that the legislation is an important step in making insulin more affordable across the country.

“Families need this,” said Mandy Shelton. “Where we are as a family, we’re okay, but I know that not everybody is like that. People are rationing their insulin and being hospitalized because they’re trying to ration their insulin. The future of the kids who have Type 1 diabetes and are worried about their future, we really need to think about them.”

“I think the whole United States should definitely [cap insulin costs], it should be federal across the board,” said Rachael Caldwell. “I know there’s gonna be families that have it way worse. You know, single parents, I can’t imagine them having to just take care of a kid on their own and still having to go to work. People that are divorced, in a split family with a Type 1 diabetic. I mean, their struggles would have to be significantly more so than us. But yeah, capped insulin costs I think would help so many families.”

Tichelle Jackson says while she’s happy lawmakers are trying to lower costs and cap prices, she still believes the medication should be free because people who aren’t diabetic don’t pay for insulin since their body makes it automatically.

AFFORDABLE INSULIN NOW ACT

The Affordable Insulin Now Act passed the U.S. House March 31, 2022 by a vote of 232 to 193.

“This bill limits cost-sharing for insulin under private health insurance and the Medicare prescription drug benefit.

Specifically, the bill caps cost-sharing under private health insurance for a month’s supply of selected insulin products at $35 or 25% of a plan’s negotiated price (after any price concessions), whichever is less, beginning in 2023.

The bill caps cost-sharing under the Medicare prescription drug benefit for a month’s supply of covered insulin products at $35 beginning in 2023.

Currently, the Centers for Medicare & Medicaid Services is testing a voluntary model under the Medicare prescription drug benefit (the Part D Senior Savings Model) in which the copayment for a month’s supply of insulin is capped at $35 through participating plans. The model is set to expire on December 31, 2025.

The bill also (1) further delays implementation of regulations relating to the treatment of certain Medicare prescription drug benefit rebates from drug manufacturers for purposes of federal anti-kickback laws, and (2) increases funding for the Medicare Improvement Fund.”

To see how your representative voted, clerk HERE. The bill was sent to the U.S. Senate but there’s no indication if or when the Senate will take it up.

We reached out to U.S. Congressman Jim Banks, who voted against the legislation in the House. He responded:

“Don’t be fooled, Democrats are more concerned with passing partisan messaging bills that are dead on arrival in the Senate than helping families access affordable insulin. If we voted for legislation simply based on the name, I would have supported it. However, the non-partisan Congressional Budget Office analysis found this bill would have the reverse effect and would drive up the cost of health insurance for all Americans.”

Congressman Jim Banks, (R) Indiana 3rd District

We also reached out to Senators Todd Young and Mike Braun for statements on the legislation.

“Senator Young is reviewing legislative proposals on this issue.”

Jay Kenworthy, Indiana Communications Director for Republican U.S. Senator Todd Young

“We do not have a statement on this legislation yet, but yesterday we did send a letter to the FTC pressing the agency for a rigorous review of the impact that Pharmacy Benefit Manager (PBM) business practices have on the price of insulin.”

Spokesperson for Republican U.S. Senator Mike Braun

A link to that letter can be found HERE.

The American Diabetes Association also notes that having health insurance is critically important for people with diabetes because “it improves access to insulin and other medications, diabetes devices and supplies, and other key health care services.”

If you are uninsured, you can visit www.healthcare.gov to learn if there may be an affordable health plan for you.

And to find a community health clinic or pharmacy in your area that may offer free or low-cost services and medications, as well as to learn about assistance programs for insulin and devices, you can visit www.insulinhelp.org.