Carter, Age 5
Our family has been fortunate enough to have very good insurance coverage through an employer which provides 90% coverage for medical foods. Out insurance covers 90% of medical foods however we have to get the providers approved by the insurance company and they have to re-approve the coverage every 6 months. It was such a challenge getting the first medical foods providers approved that we have not tried to get any other providers covered. This limits my son’s choices. His formula is also covered at 90% until we hit our deductible, which usually happens in the latter part of the year. However, it could take a change in carriers by my husband’s employer, a change in jobs, or a move to a new state that could completely change this. Although my son is only 5, I worry about him getting proper coverage to manage his disease when he is older and living on his own. Will his employer offer good enough coverage? Will he be restricted from obtaining these foods because of where he lives? So much of the success we have had in managing his MSUD is due to the access we have had to medical foods. The old saying “an ounce of prevention is worth a pound of cure” applies to our experience. Because of being able to adhere to his diet, it has kept him out of the hospital and allowed him to thrive without being subjected to the damage caused by a metabolic crisis. While we know this can change in a moment’s notice, we also know it has had a direct positive effect on this life. Everyone with a metabolic disease should have this opportunity to thrive.