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Loophole In Illinois Law Capping Insulin Prices Leaves Patients Flabbergasted; 'I Just Don't Understand Why I Have To Pay This Ridiculous Rate'

CHICAGO (CBS) -- Insulin's got a bad rap for breaking the bank. A new Illinois law was supposed to cap the price at $100 per month, so why are some still being charged eight times that?

CBS 2 Morning Insider Tim McNicholas looks into the law's shortcomings, as well as another state that's found a potential solution.

For George Levin, his box of insulin holds a lifeline, but it comes at a cost.

"I don't know what our other options are at this point, expect to be paying nearly $1,000 a month for insulin," he said.

Levin can't work right now because of a recent surgery, and his partner Jeffrey Giles was laid off in early 2020.

"It's been impossible to find a job," Giles said.

"This whole year has been a little bit of hell," Levin said.

So they're paying $1,400 per month for a private insurance plan; which still leaves them paying hundreds per month for insulin.

"All my other drugs are affordable. I just don't understand why I have to pay this ridiculous rate," Levin said.

Then they heard about a solution from Springfield; a new law that capped insulin prices at $100 per month starting in 2021.

"I was thrilled. Actually, my mom was the one that informed me about the law," Levin said.

But when the couple tried to get the insulin from CVS this month, they were charged more than $400 for a two-week supply.

When they brought up the new law?

"They were clueless. They didn't have any idea what we were talking about," Levin said.

They called their insurance provider, US Health, who explained that the law does not apply to their policy, apparently, because it's not a state-regulated plan.

One of the law's sponsors, Rep. Will Guzzardi (D-Chicago) said he's heard other stories about what he calls "miscommunication around the question of what it means to be state-regulated, and where they got their plans from."

"I think it would really help if the state put some kind of information out there; maybe public service announcements, a hotline people could call just to get a handle on getting questions answered and simplifying the whole process," Giles said.

We've learned other states that passed cost caps have run into similar problems, with residents disappointed to learn the law only applies to state-regulated plans.

That's one reason Utah recently followed up with another law that gives residents a rebate upfront for insulin, regardless of your insurance. The sponsor says it mainly helps people with high insurance deductibles or no insurance at all.

"I mean, it's not the lowest price that anyone can get, but it's a whole lot better than paying for full retail. we're talking about discounts of well over 60%," Utah state Rep. Norman Thurston said.

We sent that law to Guzzardi, and he said he's looking into it, as well as a model in Minnesota that creates an emergency insulin supply for people in need.

Levin and Giles say what would really help is a bill that caps the costs at $100 per month, regardless of your insurance plan.

For now, all they can do is hope their 2021 is better than 2020.

After we reached out to CVS, they called Levin and Giles and offered them a cheaper option for insulin, but the couple says they'll still have to pay about $500 per month.

As for the couple's insurance provider, US Health? We have not heard anything from them.

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