Jacob Ogles
Pasco County mother Stephanie Walls makes the three-hour drive to Valdosta State University every few weeks these days to see her son, Remington.
It’s not just the anxiety of a parent whose child recently moved away from home for school. Each trip, she brings with her a red wagon full of nutritional supplements, the only sustenance he can consume besides water to stay alive.
“You take it away, and there’s nothing else he gets,” she said.
Yet the Walls’ insurance won’t fully cover the drinks, known as enteral formulas, because most who consume them do so in addition to their diet. The beverages Remington ingests total up to about $26,000 a year.
Now new legislation filed by state Sen. Kelli Stargel and state Rep. Ardian Zika could plug a hole in state law and make sure access to this liquid doesn’t leak through the cracks.
Remington suffers from a rare food allergy called eosinophilic esophagitis, which prevents him from eating any solid food. As long as he maintains access to his drinks, he can live an active life attending class, playing sports and keeping up with his college class load.
But without them, he will starve to death.
“Being able to access the elemental formula is essential for my survival,” Remington explains. “I can’t just go to a restaurant or the store when I get hungry like most people.”
In 2016, the Walls’ insurance provider in 2016 decided the supplement did not count as a necessary health expense. It left the family in distress.
But after Stephanie expressed her fears on Facebook, her message made it to an old high school acquaintance, Stargel.
“I said what’s the problem Stephanie?” the now-state senator recalled. “How can I help?”
The Lakeland Republican studied the issue and learned how the supplement, if consumed in drink form, doesn’t count as a necessary source of nutrition. If Remington were bedridden and fed through a tube, it could cover the liquid.
As things stand, most insurance policies treat buying enteral formulas no different from paying for a family to include more extensive food in their diet.
Initially, Stargel tried to tackle the problem through the budget item the last Session. But that approach didn’t withstand negotiations between the House and Senate. This year, she decided to push for legislation.
She connected with Zika in the House. The Pasco County Republican proved anxious to help the local family.
“This man has gone through so much and overcome so much adversity,” Zika said. “I ran for office because I wanted to be a voice for the voiceless. To me, this is a life issue.”
Now, Stargel’s bill in the Senate (SB 358) and Zika’s companion bill in the House (HB 539) seek a permanent solution by revising criteria under current state law for coverage of enteral formulas.
Stargel said her team carefully crafted legislation to make sure the supplements get covered in life-threatening situations, like Remington’s.
“It’s written in a subtle way, so we don’t allow everybody to pay for supplements this way,” she said.
The legislation as written could help 200 to 300 families in similar situations.
Notably, that only includes families now on the state group insurance program, but Stargel hopes private insurance providers follow suit with their own policies.
For now, Zika said he’s focused on getting the bill on a committee calendar so he can share Walls’ story with fellow lawmakers.
“This is a bill we can come together on, regardless of political party, and put people first,” he said.
Meanwhile, the Walls have also spoken to Congressional leaders about a federal solution. Remington testified to lawmakers in Washington about his condition during a briefing session about the Medical Nutrition Equity Act.
For Stephanie, the legislation represents more than a solution to a real family budget problem. Providing reasonable access to enteral formula could determine whether her son lives an independent life.
A $26,000 annual expense on a young college graduate, she said, will be crippling. And while the family has searched for some insurance assistance, the problems will worsen when Remington turns 26 and can no longer stay on his family’s insurance.
She doesn’t want her son tied to government assistance programs and to have his ambitions limited to whatever may be available through the state of Florida.
“I don’t want to be setting him up to live off the system,” she said. “That’s just setting him up to fail. But we can’t solve this problem if there’s not coverage.
