I have tried to find a way to upload a document to Google Blogger, but have been unsuccessful. As I have received several requests to make the letter I wrote to Rep Smith available for others, I am pasting a template of it below. Below this letter, is a link to the draft bill I attached provided by childrensmagic.org. I hope this is able to help many! Please let me know if you are able to use any of this and have success!
Representative/Senator (Name),
I am writing to urge you to sponsor legislation that will have a tremendous impact on many working class families with medically fragile children. My child has been diagnosed with (insert your information here – I have left what I had in my initial letter as an example) food protein-induced enterocolitis syndrome (FPIES), a condition that causes his body to reject most food proteins. The reaction to most proteins is very severe and has even caused my child to go into shock. The only form of nutrition he can currently be sustained on is a prescription amino-acid based formula (AKA: elemental formula). This formula costs $(insert dollar amount here) per can and although my family pays over $(insert dollar amount here) per month for group insurance through our employers, it is not even partially covered by our insurance plan through (insert name of insurance company). Both my husband and I are employed full-time within the private sector and we still struggle to provide my son with something as basic as the food he needs to survive.
My family is not alone in this struggle. Though my son has (insert condition here), many other conditions can cause a child to require an amino-acid based formula as their sole form of nutrition. This is an issue that affects many families who are working class who reside within our own district. The confusing part about our inability to receive assistance to cover the tremendous expense associated with nourishing my son is that only working class families are excluded from assistance. Currently, WIC, Medicaid, the state employee’s plan, and the federal employee's plan cover the cost of amino-acid based formulas when prescribed as the sole source of nutrition for a child. Only those of us who are middle class or above and employed by the private sector are left to manage this expense without assistance. Many families make decisions like down-sizing their home or becoming unemployed so they can qualify for Medicaid just to overcome the expense associated with this type of formula. This is why I urge you to sponsor legislation requiring private insurance policies in South Carolina to cover the expense of amino-acid based formulas when prescribed as the sole source of nutrition for a child.
Many states have already enacted similar legislation including Arizona, Conneticut, Illinois, Maine, Maryland, Massachusetts, Minnesota, New Hampshire, New Jersey, New York, Oregon, Rhode Island, South Dakota, and Texas. I am attaching a draft of this type of legislation for your review. If you would like to learn more about my family's story, (insert your info here… an example may be please feel free to contact me at any time – I have left the info from my initial letter here as an example) please feel free to visit my blog at www.whatseatingyou-fpies.blogspot.com. Thank you so much for your time. I look forward to hearing from you and am hopeful that you will advocate for the many working class families who struggle with this issue.
Kind Regards,
YOUR NAME HERE
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