Non-Insured Newly Weds

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    • Non-Insured Newly Weds


      My husband and I have just been married a year, I have PKU. I am finishing school at a Massage Therapy college and he is starting his own business. Needless to say, we don't have insurance right now and finances are tight. I'm over 19 so the state of Utah won't cover my formula anymore. To buy my formula, Phenex 2, from the manufacturer-- just for 1 months worth-- is well over $700. We don't have that kind of money and we have briefly looked into the National Organization for Rare Disorders (NORD) for assistance.

      I guess I'm wondering if anyone has had luck with NORD or if they have an insurance company in the United States who is good about coverage with PKU related expenses. If we have to fork out the cash, we'd rather spend it on an insurance company than formula alone.

      Thank you so much. Comments appreciated!