Comment from Sherie Szubski
AnonymousSupportIndividual
Summary: Sheryl Szubski, an Oregon Medicaid member, is requesting that the FDA update its recognized standards and formularies to include specific treatments for Mast Cell Activation Syndrome (MCAS) and Common Variable Immunodeficiency (CVID). She argues that current standards are inadequate for these complex disorders and provides extensive clinical documentation of her own condition and the need for specialized immunologist oversight.
Please update formularies to current specs. Immunologists are the experts in MCAS and CVID. Treating Postural Orthostatic Tachycardia Syndrome (POTS) and hypermobile Ehlers-Danlos Syndrome (hEDS) often requires a multidisciplinary medical team. These are complicated disorders and in Oregon, we have an ER doc making critical medicinal decisions on something she knows very little about. Please reach out if you need additional data. I have documentation from 2016 to present.