SAN DIEGO, Calif. (NBC) — The CDC is warning of an “alarming” surge in diabetes in the coming decades among Americans under age 20. And treating the disease with insulin can be very expensive.

If you caught sight of two brothers, Owen and Thomas Gibson playing ball the chances are you’d never guess their pockets are constantly stocked with medical supplies. But for some of one in ten Americans with diabetes, just opening their family refrigerator is a constant reminder that life and insulin come at a frustrating price. 

NBC: “And it’s not like this is new, right?”

“No, it’s never changed,” Thomas said. “The patent was sold for $1 one century ago, and since then nothing has changed it hasn’t gotten better it’s just gotten more expensive.”

As inflation rises, insulin prices in the U.S. remain by far the highest in the world.

“We are definitely seeing people living with diabetes ration their insulin more than they ever been,” said Chuck Henderson, American Diabetes Association CEO.

NBC: “And how dangerous is that?”

“It’s incredibly dangerous. I mean it, you are dealing with people’s lives,” Henderson said when asked how dangerous it is to ration insulin. 

For years some have chosen to head across the border to buy insulin in places like Mexico, similar to a group NBC accompanied in 2019.

But in 2022, there was hope that all that could finally change with the Inflation Reduction Act and talk of a nation wide cap on monthly insulin costs.

When the legislation goes into effect in January there will be a $35 per month limit on what patients pay out of pocket for insulin but only for those with medicare.

The Gibson brothers are among an estimated more than 21 million being left behind.

When you heard about the Inflation Reduction Act and then you found out that that relief seems to have an age to it. What went through your mind?

“I’m so angry. It’s exhausting,” the parent of the two brothers, Annemarie said. “Just getting your hopes up thinking ‘wow, maybe now we’ll see a change.’ I just feel like we’re being completely taken advantage of we need this all the time. This is we’re like completely vulnerable here. Like you know, we don’t have other options.”

NBC: “This year, how much has providing that to them cost you out of pocket?”

“On average, in a year, we’re over $20,000,” Annemarie said. 

NBC: “You guys are over $20,000 and out-of-pocket expenses. and you’re saying you’re lucky because you guys have insurance.”

“We are not the worst off. We have insurance,” Annemarie said. “There are people who don’t, and that’s really scary because those people have to make hard decisions. You know, do we buy insulin, or do we pay rent? Do we buy insulin? Or do we go to the grocery store? For the week? I mean, We have not been in that dire situation, but it doesn’t always seem that far off.”

A constant fear shared by millions of other families dealing with diabetes every day.