If we had coverage for Josephine’s medical nutrition it would be such a blessing to not only Josephine but to our family. Because we pay so much in medical needs it has prevented us from spending more on foods that Josephine would benefit more from or even donating more toward research for a cure of PKU. We also have no savings because of it cost’s and home repairs we have been unable to get fixed. I in know way feel entitled, I love my little girl and will do what I need to do for her and pay what I need. I just wish insurance would cover what it should for a condition we didn’t ask for and there be some kind of reform. I also ask that the companies selling the formula so much to insurance companies, they need to be reasonable. Our insurance company does pay 70% of formula cost but it is still cheaper to pay out of pocket instead. For an example my copay is $494.00 for a case of formula through insurance and it’s $281.00 a case out of pocket and Josephine needs 3 cases a month. We are a family of 6 and honesty can not afford the copay plus the cost of insurance and the other low protein foods she needs. We were even considering canceling our insurance because we were having a financial hardship because of Covid19.
- Braxton, Age 1
- Brielle, Age 12