A family finds a miracle drug for their son, but it comes at a high cost

Feb 16, 2022, 9:49 PM | Updated: Jun 13, 2022, 4:37 pm

The Sorensens say they are getting a very real life-lesson about the gaps in our nation’s health care system.

While they’ve never really had a major need, they’re now seeing that an urgent opportunity for their son’s condition comes at a steep cost.

Cal Sorensen’s love for basketball knows no bounds. He’s almost 10 years old and he was born with achondroplasia, the most common form of dwarfism.

“His favorite player is Rudy Gobert. He loves the Jazz.”

“It occurs in about one in 40,000 people,” Marcus Sorenson said. “When we had Cal, we had no idea that that was even really possible.”

Marcus and Jamie Sorensen say their son is mostly unfazed.

“He’s really good at just rolling with it,” Marcus said.

But then they learned there’s a chance for him to gain a bit more height. It’s called voxzogo, and it’s enough to be a big deal. But like most breakthrough drugs, it’s expensive.

“When the drug came out, we were excited at the thought of possibly Cal just you know…it’s not an amazing change in height, but it gives them, from what we’ve read and researched, a little bit — 2 to 3 inches,” Jamie said. “The drug is $30,000 a month.”

Marcus says as a small-business owner, he’s learned it’s nearly impossible to get the type of insurance that will cover it.

“Seems nonsensical to me. Why, if I were to work for Google, I’d have great insurance, but if I own my own small business. which is kind of the backbone of this country, I can’t get a hold of insurance that’s worth anything without paying through the nose,” Marcus said.

It’s a disparity they won’t likely overcome in time. Cal would need to take the drug while his growth plates are open… a window that could close as he reaches adolescence.

“It’s a lot of money,” Cal said.

Either way, the Sorensens say life will go on, but they say it’s just one example of disparities in our health care system.

A lot of people are hit harder by it, but there doesn’t seem to be an easy answer.

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A family finds a miracle drug for their son, but it comes at a high cost