ST. PETERSBURG, Fla. - A Pinellas County mom is pushing for more accessible medical food for her 4-year-old son diagnosed with a rare metabolic disorder.
Local perspective:
"Gideon was diagnosed with phenylketonuria or PKU. PKU is an inherited genetic disorder where the body can't break down an amino acid called phentolamine," said Gideon's mom, Elizabeth Bennett.
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Protein-rich foods contain phentolamine like meat, poultry, eggs, and even vegetables.
By the numbers:
According to the National PKU Alliance, 1 in 25,000 people in the U.S. are diagnosed with PKU. Gideon has the most severe form, Classical. The four-year-old can't have more than seven grams of protein a day.
"To put that into perspective, that's two cups of broccoli," she said.
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If Gideon exceeds that limit, he could experience headaches, memory issues, even seizures.
"Gideon has to follow a strict low-protein diet relying on specially designed medical food in a formula that provides the essential nutrients that his body needs without the phenylalanine in it," he explained.
The family is in the process of losing their Medicaid, because their annual household income is just over $39,900. She said,
"His medical food alone can range at minimum $1,000 a month, a minimum of $12,000 a year," she said.
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According to Florida Statute, insurance coverage for medical food cannot exceed $2,500 annually for individuals through the age of 24. That means there is some respite for some Florida families.
But, Bennett said, still that kind of coverage barely scratches the surface. Some states do not provide any coverage for medical food.
Why you should care:
In 2023, Congressman James P. McGovern of MA introduced HR 6892, known as the Medical Nutrition Equity Act of 2023.
"This MNEA would provide coverage for medically necessary foods, vitamins and individual amino acids for inherited metabolic disorders from federal health programs and private health insurance," she said.
The legislation has since bounced back and forth between committees and stalled last December. Bennett hopes Gideon's story will spread awareness about the disorder and spur some real change for families like hers.