Community Discussion Forum Adults and PKU Formula for my husband

Viewing 6 posts - 1 through 6 (of 6 total)
  • Author
  • #8462
    Avatar of Stacy

    I have some great news-The insurance company approved Kuvan for my husband.  Now we are just waiting to hear from the specialist pharmacy to get everything set up.  Now we're trying to get approval for the formula.  Any suggestions?  Also, is there any way to request reimbursement for the special food we need to buy for him?  I live in Georgia if this helps.

    Avatar of Katie

    Here is some more information I was able to gather regarding Medical coverage for formula and/or food for your state…. I hope it helps!!!

    As you know, each state has an insurance department that regulates insurance in that state. The insurance department of each state would be the source for information on this topic The contact information for each state's insurance department is —

    Insurance and Safety Fire Commissioner

    Two Martin Luther King, Jr. Dr.

    West Tower, Suite 716

    Atlanta, GA 30334


    Toll free: 1-800-656-2298 (GA)

    TTY: 711

    Fax: 404-657-8542


    Avatar of Terri

    This is for Newatthis…I read your story about your husband w/ PKU…I am not sure…what was his level? I am 46 and have CPKU…untreated my level is 25 mg…Im just really curious..Good luck with him goin back on diet..I personally believe nothing has worked for me w/ PKU like the diet…although I do the the development of Kuvan was great! been waiting for that for 15 yrs…been hearing about it…

    Avatar of Stacy

    Thanks for the info guys!  We're having the WORST time trying to get the formula.  Our insurance will cover it with a letter of medical necessity.  I can get that without any problem but finding a provider that can get the formula has been a nightmare.  We're currently trying to find someone that can get PKU 3 made by Milupa.  I tried working with Apria Healthcare and I haven't gotten anywhere.  We've spent a week going around in circles talking to anyone we can think of and are still at square one.  Can anyone provide me with a Durable Medical Equipment provider as that is what everyone tells me I have to use to get the formula???  Thanks in advance

    Terri, My husbands levels were at 1197, the normal was between 30-80 for people without pku.  I don't know the measurements of that but maybe that will give you an idea.  He got his blood tested again last Wednesday so we're just waiting to see how much restricting his diet has helped.  I'm just worried for him not having the formula and restricting his diet because every website I've read said that diet restriction without the supplemental formula is dangerous.  So hopefully we can find someone to help us soon.  Our family DR is doing a really great job for being just a regular DR and our specialist appointment isn't until February 23 of next year so we've got a long wait ahead of us.

    Any information on this would be greatly appreciated.  I can find websites to order the formula on but they don't accept insurance and we don't have the money to get it without the insurance.

    Avatar of Scott

    Hi, newatthis – it sounds like you are having some challenges with insurance for formula coverage.  I would encourage you to check out Georgia PKU Connect.  We are a new non-profit support group for the PKU community in Georgia.  We have a great relationship with Emory's Metabolic Clinic here in Atlanta.   We are building relationships in Georgia to ensure that everyone has the best opportunity for success while dealing with phe levels, diets, labs, insurance, low protein foods,… on top of all of the other stresses of daily life.  Please check out our web site and send us a note – we would love to try to give some guidance and/or support (


    Avatar of Stacy

    Thanks so much Scott!  Right now it looks like Apria Healthcare has finally worked out the kinks per say and hopefully we'll have the formula soon.  I'll definitely be adding the GA pku website to my favorites.  I'm new at all of this and my husband is still a little shocked being thrown back into the PKU cycle.  Thanks everyone for all of your help!

Viewing 6 posts - 1 through 6 (of 6 total)
Quick Poll
Which of the following best describes you?
Parent/caregiver of an infant with PKU
Parent/caregiver of a child with PKU
Teenager with PKU
Adult with PKU
Grandparent of a child with PKU
Know someone with PKU
Healthcare professional