Hi, this is my friend, Jackson. He was born June, 2012. Thanks to newborn screening, he was diagnosed with a genetic metabolic disorder known as PKU. Without adherence to a strict diet and his special formula, he may be at high risk for neurologic dysfunctions.
Phenylketonuria (PKU) is a life-long disorder currently without a cure. PKU is a recessive metabolic disorder, meaning both parents have to carry the gene; there is a 1 in 4 chance of these parents having a child with PKU. Those with this disorder, lack the enzyme phenylalanine hydroxylase, which is responsible for breaking down phenylalanine (PHE). This amino acid is essential for normal growth and development. Treatment consists of "diet for life." This is the standard of care for PKU. This diet consists of low-PHE/low-protein foods, along with life long use of medical formula. Without treatment or if the PKU individual has frequent abnormal phenylalanine levels for long periods of time, Phenylalanine can be neurotoxic to the individual which will bring them at high risk of suffering from brain and central nervous system damage, mental retardation, seizures, hyperactivity, eczema, along with behavioral and social issues. Thankfully with the newborn screening, most cases of PKU are caught early enough to prevent this damage.
His diet consists of a new medical formula called Periflex Junior and he has to drink it everyday FOR THE REST OF HIS LIFE. Currently, his formula costs $990 a month through the home health agency and if he goes without it, the neurotoxic effects will start to take place. Due to the new Affordable Care Act, insurance companies are going to try to stop covering on some things such as Periflex Junior formula so they can lower their insurance costs to stay competitive with the Affordable Care Act.
His family just received news that his insurance company, Cigna, decided they would no longer cover the formula since he is over a year old. The Collins family cannot afford to pay for the lifesaving formula without the help from insurance. Currently in Kansas, there is no mandated insurance coverage for PKU products such as Periflex Junior due to HB 2255 which was passed in 1997. These laws need to be changed and Cigna health care needs to be held responsible. Ironically, if his mother orders the formula directly from the company that makes Periflex, insurance will not cover it even though it is considerably cheaper ($300/month) than to go thru the home health agency.
Please help me fight against this family's insurance company, Cigna, and the laws in Kansas. Something needs to change and it needs to change now! His parents are doing everything they can and now its our turn to fight back. His life shouldn't have to change due to this insurance company bullying and from regressive Kansas' laws. States such as Nebraska and Texas mandate that insurance companies cover the formula. Let's help make Kansas one of those states! We appreciate your support!
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