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State mandate for insurance coverage of metabolic formula in Michigan

This petition had 7,235 supporters

There is currently no mandate for private insurance companies to cover metabolic formula in the state of Michigan. Metabolic formula for PKU and many other inborn errors if metabolism provides essential nutrients, calories, and specific amounts of individual amino acids or other nutrients that CANNOT be provided in foods alone. If these patients are unable to obtain their formula they can suffer debilitating side effects, become mentally disabled, or die.

These disorders are diagnosed on newborn screening and are life long, but TREATABLE. If you have a child, they had a newborn screen at birth (unless you as a parent knowingly opted out). If diagnosed, treatment with metabolic formula typically begins during the first week of life and continues through adulthood. These patients are alive and thriving because of their formula. They are smart, funny, and caring children and adults.

Funds that were previously available to cover metabolic formula in Michigan are dissolving. Formulas that were previously provided at wholesale pricing are now costing state programs HUNDREDS OF THOUSANDS of dollars per year.

These very rare conditions do not have a large voice. As a registered dietitian in this rare community, I have been advocating every day on behalf of my patients and going to extreme lengths to ensure patients do not go a day without formula. If I am feeling frustrated, I cannot even begin to fathom what this must feel like as a parent or patient.  

A state mandate for metabolic formula coverage would reduce costs to state programs and prevent debilitating side effects and possible death for patients with rare inborn errors of metabolism.  Most importantly, it would ensure access to formula and remove this burden from patients and parents who are faced with a rare disorder.

Thank you for bringing attention to this issue!

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