1. United States
2. Pa.
3. Letter

Now that the "Big Beautiful Bill" has passed, my child will lose her secondary Medicaid. My child has Phenylketonuria, or PKU for short which is a rare metabolic disorder that makes her unable to process protein. Irreversible brain damage occurs if she is not on a strict regimen to control her levels. She must drink formula for life to get enough nutrients that she cannot get through her protein restricted diet. She is also on a medication that allows to eat a little bit more protein per day. With this medication, she has gone from 8 grams of protein a day to 16 grams. It's a HUGE jump for her and allows us to provide her a balanced diet. Without it, we are severely limited in our options. For context, one egg contains 6 grams of protein. Imagine what your life would be like with these restrictions. Each one of you were instrumental in allowing this to happen, thus I DEMAND you provide a detailed solution that will allow her to stay on these medications. Cost per month is $6,000. Additionally, I am happy to meet with you in person to discuss this further. Please have a staffer reach out.