These medical foods and formulas are not “optional” or “nice to have” for those of us with PKU andsimilar metabolic disorders. They are like insulin for a diabetic. I cannot walk into a GNC and buy formula off the shelf. Instead, I have to get a prescription from my clinical team, submit it to insurance, hope they will cover it, try to find a pharmacy which can fill the prescription, and deal with bureaucracy, denials, appeals, and red tape along the way. Without my medical foods and formula, I would not be a productive member of society. Instead, I would likely be severely mentally disabled, and possibly institutionalized. Because my parents, my clinical team, and I have been able to advocate for ourselves, push through the layers of insurance company bureaucracy, and remain persistent, I have stayed on my PKU diet for life. In this time, I’ve received scholarships for undergraduate and graduate study, have had good jobs in the aerospace industry, and have contributed to society. Without medical foods and formula, this would not have been possible. I have been extremely fortunate and lucky that my family and I have been able to get some insurance coverage and are financially able to pay what is not covered. Many families with metabolic disorders are not so fortunate.
My employer’s insurance plan reluctantly covers medical formula via the DME process, with a 10% copay and an annual deductible. Getting this coverage took considerable time and multiple phone calls just to get an “override approval” since medical foods are not part of the normal process. My company has been acquired, and our health insurance will be changing over to the new company’s plan in January. Frankly, this terrifies me–I’ll probably end up spending hours on the phone trying to determine what is covered, how to appeal denials, and how to actually get the medical formula to me. Currently, between deductibles and copays, I am paying approximately $500 per month for medical formula. Ironically, my plan covers Kuvan, which is orders of magnitude more expensive than the medical formula, with no questions and a $45/month copay. UPDATE, December 2018: Due to a corporate acquisition, I will have new insurance at the beginning of 2019. The new company is self-insurance, which means they are not legally required to offer any medical formula coverage. This is absolutely terrifying to me–without medical formula, I will simply not be able to maintain my current job or ability to function. Due to an acquisition, we are being switched to a different, self-insured plan at the beginning of 2019. At this point, unclear what/if any medical formula coverage I will have. Ironically, I’ve already received approval for Kuvan, despite the cost for a month’s supply of Kuvan being higher than an entire year’s medical formula.