Only four days after Kala McWain’s son, Braxton, was born, she learned he had a rare condition called phenylketonuria (PKU). This means Braxton cannot eat protein and relies on a special diet, including a low-protein formula, to keep him healthy. Throughout his life, he’ll need to drink this formula and eat specially made low-protein medicinal foods. But this type of diet is expensive — and difficult to maintain.
“He gets seven cans of his metabolic formula a month. Before insurance that costs us about $1,000,” McWain, 32, of Casper, Wyoming, told TODAY Parents. “If it costs us $1,000 every month and he’s fortunate to live to the age of 90, that’s a million dollars over his lifetime just on a metabolic formula that he is required to drink to stay healthy, to maintain a job, to get good grades, maintain a relationship.”
That’s why McWain has been lobbying her congresspeople to pass the Medical Nutrition Equity Act. If passed, the bill will require health insurance companies to cover formula and other medically prescribed foods for people with metabolic conditions, like Braxton.
“State to state, insurance plan to insurance plan, every single PKU patient is treated differently and has to find ways to cut corners in their everyday life just to support the needs of their child,” McWain said. “The Medical Nutrition Equity Act is basically meant to hold all insurance companies accountable for providing some sort of coverage for theses formulas and foods.”
The realities of PKU
When Braxton was born, he seemed “completely healthy.” Four days later, his newborn screening test results returned and the family learned he had PKU. The McWains soon received a crash course in the condition.
“There’s (20) amino acids in protein and he can’t break down one of them,” Braxton's mom explained. “He supplements with a formula that’s dense in protein minus that one amino acid, and then has to eat a very restricted low-protein diet, with mostly fruits and vegetables and low-protein foods.” People with PKU inherit the condition, which causes increasing amounts of phenylalanine to build up in the blood, according to the National Library of Medicine. Phenylalanine exists in all proteins, so any food with protein in it has it. The March of Dimes estimates that every year one in 10,000 to 15,000 babies are born with PKU a year.
Some think that people with PKU like Braxton could just skip protein-rich foods, such as meat, eggs or fish. But it’s not that simple.
“He can’t eat the pasta that we eat and he can’t eat the breads that we eat and he can’t eat the meats and the cheeses and the dairy,” McWain said. “Low-protein medical foods, specifically for PKU, you can’t obtain these without authorization from your doctor.”
What’s more, these medical foods are more expensive. A bag of pasta for Braxton might cost the family $13 and “meat alternatives” can be more than $30.
That’s a million dollars over his lifetime just on a metabolic formula that he is required to drink to stay healthy, to maintain a job, to get good grades, maintain a relationship.”
MOM KALA McWAIN
“We can’t even use the regular flour,” she said. “We have to use a baking substitute.”
Treatment for PKU is “diet for life.” Without it, Braxton could experience brain damage, brain fog, headaches, difficulty concentrating and exhaustion. Prior to low-protein diets, children with PKU experienced developmental and intellectual disabilities.
“(If) it would have not been discovered, he would essentially have never developed physically and even mentally,” McWain explained. “A lot of these kids before the ’60s when it wasn’t detected, they’d end up institutionalized at a very young age and they would have seizures and severe intellectual disabilities.”
Braxton doesn’t have any delays — he’s an active toddler, “determined to do just about everything,” and he loves sports. Currently, he’s devastated that his 4-year-old brother gets to play T-ball and Braxton is too young for the league.
While insurance covers some of the cost of Braxton’s food, that can change at any time, McWain said. Many insurance companies don’t cover or reimburse medical diets, according to the National PKU Alliance, and some families cannot afford medical nutrition. In other cases, insurers will cover formula if a child takes it via a gastrostomy feeding tube (G-tube) or a jejunostomy feeding tube (J-tube).
“If they can eat it, they don’t consider it medical treatment, essentially,” McWain said. “It gets compared to a gluten-free diet or like celiac disease.”
A low-protein diet it the only option Braxton has.
“Diet for life is the only proven effective treatment for all patients with PKU,” she said. “I have quite a community on Instagram of moms that we talk about this all the time and across the board insurance won’t cover it.”
McWain spent a lot of time working with her husband’s insurance companies to try to make sure Braxton’s food is covered. It didn’t always work.
“It was very defeating, quite frankly,” she said. “I just want Braxton to have access — for the entire PKU community to have access — to what they need to stay healthy.”
Lobbying for support
The Medical Nutrition Equity Act of 2021 aims to make sure that both federal and private health insurance policies cover “medically necessary food and vitamins and individual amino acids for digestive and inherited metabolic disorders.”
“We don’t have a federal mandate to pay for the formula and the food,” Alison Reynolds, a National PKU Alliance board member, told TODAY Parents. “Right now, it’s a patchwork of solutions depending on where you live. Some states cover up to a certain age. Some states cover up to a certain amount of years. Some states provide no coverage — which is Washington, D.C., where I live — and some places cover 100% of the food and formula.”
Reynolds said it's not unusual for people to move to another state for coverage or for some to go "off diet" because they can't afford the formula and medical foods. Formula makes up “80% of your calories and nutrition a day,” she noted. Without it, people can struggle with cognition and experience seizures.
While a federal law would help Braxton and others with PKU, it’s not the only condition that will benefit.
“There are a number of different diseases where medical foods and formula are critical for well-being and those are also included (in the bill),” Reynolds said. “If we had coverage, we would have more people treated and better outcomes — without question.”
Last year, McWain met with her senators and representatives in Wyoming to urge them to support the bill. She focused heavily on education about what PKU is. This year, she’s taking a different approach.
“I’m going to push it back on them and ask if they’ve looked at the bill and what are their hesitations,” McWain said. “What questions do they have?”
She hopes that others might contact their representatives to talk to them about the Medical Nutrition Equity bill.
“Everybody’s coverage varies from state to state and insurance plan to insurance plan,” McWain said. “You’re always on edge to find a new job to get a new insurance plan. (You think), ‘What’s it going to look like? Are we going to be OK? Are we going to be able to pay our bills?’”