As Kelly’s formula got more expensive, we looked for resources, but our income was too high for Medicaid, and the state did not test or pay for Homocystinuria (HCU) medical coverage. That is what started our advocacy activities. I started advocating to get a medical food law in Michigan. My husband and I paid a lobbyist that he knew to help me work with the legislature, and I started to attend the Newborn Screening (NBS) Advisory meeting in the state to meet the other stakeholders. I networked with many people to put together an advocacy packet and team. Parents of children with PKU [Phenylketonuria] only have a limited interest in changing the law since their formula was always covered by the state. Other genetic metabolic parents were more receptive, but our numbers were few. The insurance industry had more resources to fight the law change than we did. Our bill got a sponsor but never went to the committee. Because of the pressure we put on one insurer, they did change the law to cover some medical formula until a patient is 18. It is a start. I certainly raised awareness of the problem through the media and other efforts.

-Story from a parent advocate