Comment from Sherie Szubski

Formularies for unique disorders are antiquated at best, at least in Medicaid. I have MCAS, CVID, SjS diagnosed and we suspect POTS and hEDS. What that leaves me with are many prescriptions that don't fall under the perfect umbrella and ER Docs are making judgements over specialists, specifically immunologist. Please, let the specialists determine formulary path.Treating Postural Orthostatic Tachycardia Syndrome (POTS) and hypermobile Ehlers-Danlos Syndrome (hEDS) , Mast Cell Activation Syndrome/Disortder/Disease (MCAS), Common Variable Immunodeficiency (CVID), often requires a multidisciplinary medical team. Specifically, CVID is grossly outdated. Medical definitions are about low levels of antibodies, but it is actually an and/or situation: low levels and/or unhealthy antibodies. I desperately need Antibody Replacement Therapy and I am getting denied care through Oregon Health Authority and their subordinates in Medicaid. The attached documents are just the tip of my iceberg regarding documentation. Please reach out if you'd like more details.