Jack, Age 22
Hi, I’m Jack and I’m 23 years old, still on my parent’s insurance. This is the first year my formula has been covered through my parent’s insurance, but we haven’t received a bill yet, so we’ll see how it works out. When I was younger, the state of KS paid for my metabolic food and formula, then when I was 10 (or so), the funding got cut and we started paying out-of-pocket for it. We used the state’s CSHCN services and qualified for between 25-100% over the years. When I left home for college, I qualified for 100%, but still paid $1,026 monthly! Over the last 12 years, my parents have paid over $40K total out-of-pocket! My mom even started her own nonprofit public charity called Metabolic Bright to provide formula to families who can’t pay for it. This is a big problem for people with metabolic disorders. I worry about taking care of myself, and have even considered moving to a different state that offers better support. I’ll graduate from Kansas State University (GO Cats!) in December, and even if I make a $50K salary, I won’t be able to afford rent, insurance, and formula. Its so stressful.
Outside of that, I live a pretty normal, healthy life. I’m still on diet, take blood regularly, and keep my Phe levels near treatment range. Its hard to go out with friends and not be able to eat like they do. If you don’t know about PKU, you basically can’t eat anything most college kids eat, and its hard to always take your own food places. I’m hoping for a cure, soon. Until then, I hope I can afford to support myself and my disease in the future.