Many families face significant financial difficulty due to the high costs of treating feeding disorders and the overall lack of insurance coverage. There are still many states that do not require private insurances to cover prescription formulas and enteral nutrition and supplies. The first step is to advocate for yourself and appeal. These supplies are life sustaining. Your doctor’s office can assist with letters of medical necessity. It might also be helpful to contact the manufacturer of the product in use. Many pharmaceutical companies offer programs to help offset costs.
When traditional resources have been exhausted, check out our resource list below. The Oley foundation is a great resource to navigate not only financial resources but education as well. See their link below. Please reach out to info@carealine.com if you have any resources to add!
Oley Foundation – Provides advocacy and support for those living with IV or tube feeding.
Feeding Matters – Provides financial resources for any parent or legal guardian of a child under the age of 18 years old with a pediatric feeding disorder who can demonstrate financial need and resides in the U.S.
https://www.feedingmatters.org/family-assistance/
HNC Living Foundation – Provides financial assistance to patients currently in treatment for head and neck cancers. Must meet income requirements.
Complex Child – A resource guide for enteral formula coverage.
https://complexchild.org/articles/2014-articles/april/enteral-formula-coverage/
Pennies from Heaven, Caleb’s Foundation – Caleb’s Pennies helps relieve financial burdens of parents whose children are currently or recently hospitalized, receiving ongoing medical treatment at a medical facility or receiving specialized nursing care at home. Caleb’s Foundation will help with covering a rent or mortgage payment, electric or medical bill, even groceries for the week.
https://calebspennies.org/gethelp/
Good Days – provides financial support for a prescribed medication that is FDA approved to treat the covered diagnosis. Must have valid insurance coverage and reside in the U.S.
The Marcel’s Way Family Fund – program that offers a helping hand in the way of direct financial support to those suffering from mitochondrial disease. Grants are designed to assist with the high cost of medications, services, and medical equipment.
Mica Hammond Charitable Fund – Scholarships periodically awarded to patients with uninsured expenses related to and incurred by needs-based families that use blended diets for G-tubed special needs children.
https://charitysmith.org/memorial-funds/mica-hammond-fund/
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