Teen isn’t defined by rare disease

Remington Walls is just like any other 17-year-old.

Except that he can’t eat food.

Walls, a junior at Land O’ Lakes High School, suffers from a rare disease called Eosinophilic Esophagitis (EoE).

Essentially, all food deteriorates his esophagus — and there is no cure.

His only source of nutrition comes via a hypoallergenic amino acid-based liquid formula, called Neocate EO28 Splash.

It’s specifically designed for patients who are allergic to proteins.

Walls drinks the “shake” 15 to 18 times per day, about every two hours.

Moreover, he’s been drinking the same flavor — orange-pineapple — every day since he was removed from all foods at age 4. It is his only flavor option.

The teen, however, doesn’t let the disorder define him.

“You try not to think about it,” he said.

It also hasn’t prevented him from pursuing his passions, including baseball.

He’s currently a switch-hitting, leftfielder on the Land O’ Lakes Gators varsity squad.

“The only thing I can’t do is eat,” he said. “That’s how I look at it.”

And, over the years, he’s learned to cope with the realization he can’t enjoy any of the foods his peers consume on a daily basis.

“I’ve been around it so long it doesn’t bother me at all. I drink my shake, they have their food,” he said.

But, in recent months, a new hurdle has emerged.

Every year, Walls’ formula was fully covered through insurance — until now.

His mother, Stephanie Walls, says coverage was coming through Verizon, her husband’s employer. However, when Frontier Communications bought out the company in 2016, the insurance coverage changed under a policy with Anthem Blue Cross Blue Shield.

As of Jan 1, the insurance company has declined any coverage of the formula.

The family has made multiple appeals, but has been denied each time — even after Anthem’s board of doctors deemed that Walls’ formula was medically necessary for “sustenance of life.”

Stephanie’s insurance plan, likewise, doesn’t cover the elemental formula.

“For Rem, his nutrition is like insulin for diabetics,” she explained. “How do you deny this? It’s not like it just came up over night. We’ve had this disease now since (Remington was) the age of 4. We are absolutely stymied that they are allowed to do this.”

Remington, too, is aghast by the situation.

“I was shocked,” he said, “because I knew insurance always said they covered it, and then they said they didn’t cover it. I knew it was expensive, but I didn’t know how expensive until the price is actually shown.”
The formula, on average, costs about $2,000 a month.

Stephanie predicts the monthly formula payments will become even pricier as her son grows.

On top of that, the family has travel costs from the seasonal visits they must make to the Cincinnati Center for Eosinophilic Disorders, in Ohio.

“It makes me nervous,” she said of the looming expenses.

Fortunately, Stephanie said a private source has stepped forward to fund formula payments for the rest of the year.

But, the family is still battling the insurance company, trying to serve as a “voice for the voiceless.”

“We’re going to stand up for the injustice that’s taken place,” Walls said. “I don’t know if we’ll ever make progress, but we’re determined to get out there and make a difference, somehow.”
The family is now pursuing legislation, calling for mandated coverage for those who suffer from Eosinophilic disorders and need the formula to survive.

Florida law currently has a mandate to cover formula for those with Phenylketonuria, but not Eosinophilic disorders.

Stephanie — an eighth-grade language arts teacher at Pine View Middle School — has already reached out to U.S. Rep. Gus Bilirakis and to U.S. Senator Marco Rubio.

“We’re just trying to find the people we need to contact to get us in the right direction,” she said. “I have to do a ton of research and gather data before I can even move forward.”

She believes legislative efforts could take at least two years.

No matter how long it takes, she plans to keep fighting.

“It is imperative that we pass this legislation — something’s got to change,” she said. “What’s going to happen to all the kids and grownups that need this formula for later on in life?” she asked.

Between dealing with the insurance company and pursuing legislation, countless hours have been spent to help her son — and others like him.

“It’s absolutely mind-boggling the amount of time we’ve invested on this,” Stephanie said. “But, we felt forced to do it.”

Meanwhile, there has been a ground swell of community support for the Walls family.
A GoFundMe page was created on March 3 by Janeen Salzberger, a longtime family friend.

Word quickly spread after Land O’ Lakes High principal Ric Mellin passed along the information to the Pasco County School District.
As of March 27, $16, 617 has been raised. The goal is set at $40,000.
“It has humbled us greatly,” Stephanie said. “This is something we could not take on ourselves.”

To donate, visit GoFundMe.com/remington-walls.

Published March 29, 2017