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Jan. 26, 2021

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Pat Geurds, New Jersey Rare Action Network Volunteer Community Engagement Liaison

Posted by Sean Roberts

Medical Nutrition

My seven-year-old daughter, Kinsley, has digestive issues and is no longer able to eat by mouth or accept feeds through G- or J-tube access. She has been dependent on total parental nutrition (TPN) for almost four years, but it is critical to try to keep her stomach moving to prevent any damage. Her physicians have prescribed her 5mL of Pedialyte to be administered by the enteral feeding pump, at the cost of $700. Insurance denied coverage, stating patients must take in at least 25 mL per hour in order to qualify. Her fragile system cannot handle a higher volume, as her multiple medical specialists have testified. Rare disease patients must have their prescriptions and nutritional products covered appropriately without delay, so that patients do not regress.