It’s very important having coverage for medical nutrition. We could not afford to pay out of pocket and have no private insurance. If, We didn’t have the state of Louisiana and Medicaid our child would be severely permanently brain damaged and institutionalized in a state run nursing home and/hospital. The picture attached is Tyson with his BioMarin case manager at a PKU Pantry in New Orleans recently. The food on the tables are examples of what Tyson can eat. They are not cheap! A loaf of low-protein bread with maybe 10 slices cost us $5.69 each! Medicaid covers Tyson’s medical formula and KUVAN. It does not cover any low protein foods.
Patients & Providers for Medical Nutrition Equity
Working to secure access to medically-necessary nutrition for all.