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Insurance denies FDA-approved surgery for South Jordan teen with scoliosis

Posted at 5:16 PM, Oct 27, 2021

SOUTH JORDAN, Utah — A South Jordan family is getting ready to pay out of pocket for a procedure to help their 13-year-old daughter with scoliosis be in less pain.

It’s a procedure normally covered by insurance, but after almost a year of battling it out with their insurance company, the family says they have no choice but to pay cash.

They want their daughter, Isabel, to be out of pain sooner, with a less invasive surgery.

“My back is not straight, it has some curve to it, well, a lot of curve to it. There’s a lot of pain related to it and my spine is basically moving every day,’ said Isabel Perea.

Isabel is looking forward to the day she can carry around her backpack with less pain.

Diagnosed with scoliosis at 8-years-old, the teen has spent the last five years trying to correct the curve in her spine. She had decompression surgery, but the curve got worse and she needs surgery again.

“The spine curves and it rotates, so we have a rotation and a twist to the spine,” said David Butler, a physical therapist who owns Align Therapy in Lehi.

The family is looking to vertebral body tethering, a minimally invasive option with less recovery time.

A small rope like cord is attached to the vertebrae along the side of the spine to asymmetrically alter spinal growth.

With vertebral body tethering, the spine is still mobile, even while the patient is getting correction of the scoliosis as opposed to fusion which is permanent.

Isabel has been trying to get this surgery since March.

“I’m really excited to have VBT instead of rods,” said Isabel.

But Isabel has had to wait.

“We’ve received four denials and after that they sent us a letter saying this is experimental, we’re not going to ever approve it,” said Isabel's mother, Julie.

Julie Perea says her insurance PEHP, a common insurance for most first responders and teachers in Utah, has deemed the surgery experimental.

But Butler says it’s FDA-approved, and something he’s already seen work well.

‘I’ve had probably 6 patients since then that have had the surgery and most of them are doing fantastic. There’s a window of time that this one can be done and that’s while they’re growing,” said Butler.

Because the procedure is time-sensitive, the family is now getting ready to pay out of pocket. With insurance, Julie says it would cost around $4,000-8,000.

Without, she estimates it will be upwards of $100,000.

Julie and her family have moved back in with her parents to help afford the surgery.

“We’re not looking for crazy things, we just want this surgery for our daughter that will help improve the quality of her life,’ said Julie.

Their doctor, whose performed about 9 VBT surgeries, has never had an insurance company outright deny coverage.

FOX 13 reached out to PEHP Insurance for a comment. They wrote:

“We evaluate new treatments for coverage using the best available medical data.   We look to the data to help us understand things like durability of the new treatment and potential side effects.  Coverage of a new treatment occurs when the data is sufficient to support that.” - Chet Loftis

The family will schedule the procedure Thursday and it will likely be done next week. The family says they’re running out of time and need to get it done.

“Being the first to get denied for this surgery, I want parents to be aware it’s a possibility, it can happen.

“My lesson I’ve learned is just because you have insurance and think it is great, it does not mean they will cover things that are necessary,” said Julie.