Having medical coverage for formula and medical foods would be an enormous relief. Even though Owen is only 12, I have worried since birth about how he will maintain insurance coverage as an adult. How will he be able to afford formula and medical foods when he is no longer on our insurance plan? I don’t want him to have the stress of fighting with insurance over whether or not he has to pay thousands for his medical care. It is too easy for patients to give up and just stop getting treatment when the insurance companies make them fight every month and/or charge them more than they can afford. The statistics of adults off diet are scary and have haunted me for 12 years. Until there is universal coverage, I will continue to worry about the future well-being of my son. I currently have a high deductible plan of $5555. So for the first several months of the year I pay anywhere from 10%-100% out of pocket for for formula and medical foods. Once I’ve paid $5555 out of pocket, I have to pay up front for formula and foods, and then hope to be reimbursed before I get the credit card bill. I have only ever had luck getting reimbursed from one low protein food provider, so we are limited to what we order so we know we will get reimbursed. And this is the good coverage. In years past, we’ve had to fight relentlessly to even get covered at all. Each company is different, there is no standard of care.
- Linkyn, 18 months