PKU petition

Sorry to get political on here... but of course this is something that is personal to our family. Even though Maja does not require the lifelong diet required for patients with more severe cases of PKU, I had the unfortunate experience of finding out first hand how tragic it is to be diagnosed with a disease, for which there is a known treatment, and finding our insurance company denying coverage for that treatment simply because the treatment happens to be a special diet; not a pill. Luckily, Maja ended up not needing to be on diet, but if she was, she could have been in for a lifetime of struggles... either with the financial burden of covering the formula and low protein foods herself, or constant battles with insurance companies to get them to pay for the treatment. 

There is currently an initiative called 21st Century Cures Initiative that is trying to ensure that healthcare laws keep pace with research for treatments of certain diseases. PKU is not currently included in this initiative, but it would be great if PKU was added so that patients with this disease would be assured coverage for the treatment. More information on the initiative can be found at http://energycommerce.house.gov/cures  If you would take a minute to sign the petition below, that would be great! The deadline is June 13th!