We are self-insured. We have had to change health insurances every year for the past several years because the insurance company went out of business, stopped covering our doctors, etc. We have to fight with the insurance companies every time we change to convince them that I need this formula in order to live. Last year, it took us 6 weeks with my mother on the phone trying to talk to the president and literally saying “She will DIE without this” and my metabolic doctor calling them about the need for my formula. They didn’t listen to her the first time she called, and she actually told me she thought she might have a heart attack if they didn’t start listening soon and give me my formula. She’s gotten very worried over the past few years about me being able to get my formula. I’m 24 years old and a student, so I get my insurance through my parents, but I’m worried about what will happen when that changes when I turn 26.
- Indigo, Age 5
- Hailey, Age 17