My kids have been on their diet their entire lives (we have three kids with PKU) and now at a crucial time (maternal age), she can not obtain her medical food. She’s is tired, has headaches, feels like she is in a fog and knows it is having a negative impact on her health. As a PKU parent who has worked tirelessly for 26 years, this breaks my heart. My daughter enrolled in her own insurance at her new job. She could not afford the best insurance so she chose the plan that was a little less expensive, but has a $2700 deductible. She went to get her formula from the pharmacy and was told it would be $4500 for a one month supply (until she met her deductible.) Unfortunately, neither her or I could afford to pay that so as of right now she has been without formula for over 7 months. That is unacceptable. Sadly, we can order her Phenex-2 directly from the manufacturer for only $490 a month. This however does not apply to her deductible and she can’t afford $490 a month either.
- Contact your Representatives and Ask Them To Co-Sponsor HR 2501
- Cody, Age 6