ST. PETERSBURG, Fla. – A Pinellas County mother is pushing for extra accessible medical meals for her 4-year-old son recognized with a uncommon metabolic dysfunction.
Native perspective:
“Gideon was recognized with phenylketonuria or PKU. PKU is an inherited genetic dysfunction the place the physique cannot break down an amino acid referred to as phentolamine,” mentioned Gideon’s mother, Elizabeth Bennett.
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Protein-rich meals comprise phentolamine like meat, poultry, eggs, and even greens.
By the numbers:
In keeping with the Nationwide PKU Alliance, 1 in 25,000 individuals within the U.S. are recognized with PKU. Gideon has probably the most extreme type, Classical. The four-year-old cannot have greater than seven grams of protein a day.
“To place that into perspective, that is two cups of broccoli,” she mentioned.
If Gideon exceeds that restrict, he might expertise complications, reminiscence points, even seizures.
“Gideon has to comply with a strict low-protein food regimen counting on specifically designed medical meals in a components that gives the important vitamins that his physique wants with out the phenylalanine in it,” he defined.
The household is within the technique of shedding their Medicaid, as a result of their annual family earnings is simply over $39,900. She mentioned,
“His medical meals alone can vary at minimal $1,000 a month, a minimal of $12,000 a yr,” she mentioned.
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In keeping with Florida Statute, insurance coverage protection for medical meals can not exceed $2,500 yearly for people via the age of 24. Which means there may be some respite for some Florida households.
However, Bennett mentioned, nonetheless that sort of protection barely scratches the floor. Some states don’t present any protection for medical meals.
Why you need to care:
In 2023, Congressman James P. McGovern of MA launched HR 6892, referred to as the Medical Diet Fairness Act of 2023.
“This MNEA would offer protection for medically obligatory meals, nutritional vitamins and particular person amino acids for inherited metabolic problems from federal well being packages and personal medical health insurance,” she mentioned.
The laws has since bounced forwards and backwards between committees and stalled final December. Bennett hopes Gideon’s story will unfold consciousness in regards to the dysfunction and spur some actual change for households like hers.
For extra details about PKU, click on right here.
The Supply: The knowledge on this story was gathered via an interview with a Pinellas County mom in addition to statistics from the Nationwide PKU Alliance and data from Florida statute and the Medical Diet Fairness Act of 2023.
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