Charlotte, Age 13

Thirteen years ago our Daughter was born with Phenylketonuria (PKU). Since then for our family of seven we have begun the upward financial battle to afford for the proper care and treatment of our child’s inherited metabolic disorder. Many insurance companies deny coverage for treatment and require much lengthy discussions about what PKU is and what treatment is required before they would consider only then covering partial treatment after all high deductibles , copays, & coinsurance are paid. But the battle does not end there! Once those are met the insurance companies continue to fight coverage or put limitations on what companies you can receive medical foods from and what kind of medical foods you can have. Having mandated insurance coverage for medical nutrition would insure that our daughter and many others living with these types of disorders whom depend on medical foods to prevent serious medical issues would be covered without the constant battle from insurance companies. Our time as a family needs to be spent on insuring our child has the best treatment and nutritional growth possible to prevent irreversible brain damage not constantly fighting insurance companies for something that should always be covered. Currently, we must meet deductible of $8000 before anything is covered.