TOPEKA, Kansas (WIBW) -- One Topeka family is facing added expenses after their insurance company told them they will not cover a vital formula for their son, who has a rare genetic disorder.
Two-year-old Jackson Collins looks like a normal, healthy, curious, happy little boy who loves to play and read books with his mom, Jessica. What you can't see is his disorder.
Jackson has PKU, or phenylketonuria. It is a lifelong metabolic disorder that prevents his body from breaking down an amino acid called phenylalanine that is found in many higher protein foods, so it strictly limits his diet. Jessica said he can't eat animal products, meats or dairy.
"It'll be sad when he gets older and he gets hungry and we have to tell him no, that he can't eat. There are parents that have had to lock their cabinets. They find wrappers under their children's bed," Jessica said.
Jackson, and every other person who has PKU, must drink a special formula and eat a specifically modified diet to develop normally, but it's expensive.
The Collins' insurance company, Cigna, was charged $990 per month by the Home Health Agency to cover the formula alone. So, they dropped Jackson and said they would not cover the formula anymore, saying they can only cover it until the child is one year old.
Every baby must get screened for PKU when they are born, however 12 states, Kansas being one of them, does not offer lifelong coverage for kids diagnosed with PKU.
Without the formula, Jackson's IQ level will drop, he will develop severe mental disorders, and could suffer from seizures and tremors, along with other behavioral disorders.
The National PKU Alliance website says that it costs $10,000 or less per year to provide the medical food and formula for a PKU patient, and the cost could be up to 13 times more for a person with untreated PKU.
"It upsets me because the formula is a prescription, just like anything else you would treat. He can't just lifestyle change. He has to have that formula to keep him normal and not see those effects," Jessica said.
Paying for the formula without insurance coverage is around $300 dollars per month. Jessica says that cost is much better than $990, but it's still an added expense her and her husband will have to deal with.
The cost of Jackson's specially manufactured rice and pasta is not cheap either. One package of pasta is around $20, and Jessica makes Jackson's special bread everyday to avoid paying around $20 for a loaf online.
"You do what you gotta do," she said. "But we tell everybody we're glad that he has PKU, that it's not something else."
The Collins' and their friend Jamin Tenbrink want state leaders to change the law, mandating that insurance companies cover the PKU formula. Jamin created a petition on change.org that has already gotten more than 1,500 signatures. They are reaching out to state leaders to hopefully draft a bill.
"I'm not sure if Governor Brownback has even heard or is even getting the emails. Eventually I think that as the word gets out and more people sign the petition you should get a response," Jamin said. "It would be nice if it happened this year, or if Cigna could help cover the cost for Jessica. That's probably the main goal right now is just to get them to cover it. There's no reason why it shouldn't be covered. It's a medical necessity."
"That's what we're trying to do here, raise awareness and try to get a change," Jessica said.
Check out and sign the petition here: http://www.change.org/petitions/cigna-kansas-governor-brownback-please-change-the-laws-and-mandate-insurance-companies-to-cover-the-cost-of-jackson-s-lifesaving-medical-formula-for-pku