Emeline

Having coverage for medical nutrition would mean so much to me and my family. As of now, my family pays about $450 out-of-pocket for medical nutrition monthly, this adds up to about $5,400 a year. All of this money going into my food has stopped us from being able to use it elsewhere. My sister is a rising senior in high school and since this money is going to my medical nutrition, we cannot put it towards her college experience. We are also not able to travel or indulge on treats for ourselves because we spend all of that money on medical nutrition. My mom is on the phone with the insurance company for hours and it makes her very grumpy. My whole family is under stress because insurance is constantly changing and most of the time we are not sure when I am going to get my medicine and food again. I have had to take less of my medical formula than I need in a day because I had to save my stock because we don’t know when I am going to receive another shipment, when this happens I am always exhausted, my grades drop because I have trouble focusing, and I overall just don’t really have much energy. My family keeps money in the bank in case insurance refuses to cover my food or formula again but when this happens it can prevent my family from getting as much financial aid as we need when it comes to my sister’s and my college. Overall the constant state of not knowing when my insurance will cover my food and formula and when it will not has hurt my family in more ways than it has done good. As for my future, I will never be able to have full control over where I can live and what I can do for a career because I will have to live in a state that has a mandate for medical foods and formula coverage for the rest of my life. I will never be able to be spontaneous and just move somewhere on a whim, I will have to argue with my insurance to cover me in another state. Having ensured coverage for medical nutrition would mean more sustainability for my family and much less stress.  I live in Maryland that has a state mandate requiring insurance to cover my medicine and medical food, but our insurance company has policies and procedures for national requirements. This means that several times a year we receive a letter from our insurance company saying that my food or my medical drugs (Kuvan) is not covered by insurance and that my family has to pay for it. Many times, what the companies charge families is more than what insurance pays. My parents have had to spend up to 20 hours a week at times just to makes sure I have what I need to keep my body and mind healthy. I worry about children with PKU whose parents do not know how to work with insurance companies.