Thankfully, there's a legal requirement that every newborn in the United States must be screened for Phenylketonuria (PKU.) Early diagnosis of this metabolic disorder can mean the difference between a healthy, active, full life and one of severe, progressive mental disability.
While the diagnosis can be a lifesaver it can also be a sentence of financial disaster for the family.
PKU prevents the body from processing protein. People with the disorder must follow a restricted, lifelong diet. They must consume a medical formula every day and low-protein foods. Both are extremely expensive. The average family cannot afford them without assistance.
Thirty-eight states have mandates to provide food and formula, but there are no federal mandates to provide treatment and many insurers don't pay.
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Most state mandates expire at the age of 6 or 18, even though the diet is required for life.
The Medical Foods Equity Act, recently introduced in Congress, would address this by requiring all insurance companies to cover the cost of medical foods for children and adults with PKU and 28 other inborn errors of metabolism. It also would require that insurers cover the medical equipment and supplies needed to administer foods.
The legislation would be a net gain for the economy. Consider that an untreated infant with PKU can lose four IQ points each month and will become severely disabled before reaching toddlerhood.
Individuals who discontinue the diet before age 10 will experience an average 12-point IQ drop before adulthood.
Children and adults who are off-diet also suffer other afflictions, including depression, impulse-control disorder, phobias, epilepsy, tremors and pareses. A treated person with PKU lives a normal, productive life.
On average, it costs $15,000 a year per person for PKU treatment. The cost of caring for a person with PKU that hasn't been treated is about $200,000 a year.
My nine-month-old son was diagnosed at birth with PKU through the newborn screenings. I must monitor his diet and provide the treatment he needs. He cannot have meats, dairy, soy or any food high in protein.
My son's metabolic formula costs about $10 a day. He will be on an age-appropriate metabolic formula for the rest of his life. The foods necessary for his treatment are extremely costly. His doctor prescribes them but our insurance company refuses to pay for the prescription.
Before the newborn screening process was required by law, this disorder went undetected and untreated. Imagine being a parent and finding out that your child would not have a mental handicap if his diet had been restricted from birth.
Through newborn screenings we now have the blessing of early detection and early treatment to save families from this tragedy.
This bill is in the first step in the legislative process. I urge the community to publicly support the Medical Foods Equity Act. Contact your representatives today and ask them to co-sponsor this legislation.