Staff time alone is the most major barrier. We are fortunate to have a Metabolic Clinic Manager to keep on top of all the insurance issues that arise for our metabolic formula patients but she spends at least 5-10 hours per week dealing with barriers. The cost to families in terms of time, costs and even anxiety about the future is hard to understate.
A young couple in the DC region had a baby diagnosed with PKU via newborn screening. They lived in a state with no mandated coverage of medical formula (Virginia) and when they learned their insurance expected them to cover the costs of 20% of his Periflex they were devastated that they would barely be able to cover it and afford rent. They made the difficult decision to move to another state and region where they would be able to depend on full medical food and formula coverage and to afford the cost of just one child with PKU.