Medical nutrition coverage would make an enormous difference to our entire family. We spent years in school to provide a good living for our family, and yet every month we are faced with the enormous cost of medical foods not covered by insurance – we have to decide, does our son have enough foods he can eat? or do we let him eat unsafe foods because they are cheaper? We pay over $1000 per month for medically necessary amino acid-modified formula that keeps him alive. The medication, Kuvan, is also a rare drug and very expensive. Our biggest concern is that our son will face the challenge of these financial burdens as an adult, when he no longer qualifies for our family insurance. Our hope is that medical nutrition equity will be in place before he has to worry about this. He has enough to worry about as it is, just taking all the extra steps required to keep him safe and healthy.
- A. Jay