Insurance problems

Insurance problems

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Insurance problems


January 24, 2011 in Uncategorized

Hi, everyone my name is Justin. I've classic PKU, and I just turned 19. I live in Alabama, and my insurance was medicaid.They covered my formula completely, but now that I'm 19 they've cut me off. I'm sure everyone knows how expensive formulas are; however, I have no idea how i am going to get my formula now. I am a college, well a community college student, and with the cost of college I don't see how I am going to be able to afford to get my formula. I think it's ridiculous, they shouldn't be able to do that because we need our formula at the very least if not more with lo protein foods. Can anyone help and give me some advice? I know God will take care of us, but I don't think we should leave it up to Him alone. If anyone can offer some help I would greatly appreciate it! God Bless, Justin

8 Reviews of Insurance problems

  1. Registered: Sep 12, 2006

    Posts: 0

    Franklin, Wisconsin

    Justin, what a crummy situation to be in! Have you tried speaking to your parents or clinic staff to see if they can offer any advice? If you are able to find different health insurance they might cover your formula, although I’m not positive on that, because I don’t have much information on how insurance works lol.

    You could also check out the National Organization for Rare Disorders (NORD) NORD is a company that provides assistance to people with rare disorders, including PKU. Someone I know told me that her daughter was able to get NORD to assist with paying for her formula. There is a link on there website that says ‘Programs & Services,’ this might be what you are looking for. On that page they also have a phone number listed (1-866-924-0100) for Phenylketonuria premium/co-payment assistance.

    Sorry I can’t be more help, but I would definitely talk to your parents/doctor about NORD. Your clinic might have a little bit more information for you! Hope you can figure something out.    

  2. Registered: Dec 13, 2010

    Posts: 0

    MF, Oregon

    Sorry to hear this…With Medicaid I am almost positive if you go fill out another application and say you are a college student they will still provide for you. You may have to be a full time student to do so. My son will be going through this issue when he turns 19 if they still have Medicaid then. As a family we will not let him go without. He is only 10 and I am taking the steps now to make sure he always continues his diet. Do you have family that can pull together and help? Maybe you can get a part time job to fund your formula and still go to college. Find the cheapest formula even if it taste gross and you have to gag it down. The protein food that you get can be made from scratch without buying prepackaged items. It even maybe cheaper. has recipes you can use and get an idea of the type of items you can utilize without the high costs. Look on the web and you can find recipes to make gluten free pasta.

    We have looked into insurance but the costs are way out of our budget. It would be cheaper if you paid for it straight out. I know it’s tough not being able to afford the diet, I go through that dread everyday.

    I know God will take care of you. He is our comfort and strength, our strong tower to run to in a time of need. If I had the means to help I would, truly.

  3. Registered: Oct 31, 2006

    Posts: 0

    Taylor, Michigan

    well im live in michigan and i know that we have a grant that pays for our formula .. i would call some one a doctor or someone that u see at the clinic

  4. Registered: Aug 27, 2010

    Posts: 0

    Plainfield, Illinois

    Unfortunately, you reside in one of only 2 states that I can think of that does not provide formula. Most insurance policies will only cover your formula until the age of 18 regardless of whether or not you are a full time student.

    I would suggest talking to your clinic, as well as any state PKU organization you may have there to determine your options. If you could move across the state border and become a legal resident of another state, then you would qualify for formula as all the states bordering you provide formula coverage for people with PKU. Another option is to be proactive and contact your government representatives through letters and calls, and try to create legislation to change the policy in Alabama. If you go that route, I suggest talking to the National PKU News, as they can offer assistance. You could also look at other state’s legislation regarding PKU formulas and use that as a template for legislation in your state.

    I would also suggest you try to obtain a letter of medical neccessity from your clinic and use that when talking to your representatives.

  5. Registered: Feb 8, 2011

    Posts: 0

    Lewisville, Texas

    what states do not cover our formula?

  6. Registered: Jul 21, 2010

    Posts: 0

    Midland City, Alabama

    I looked it up and its Alabama, which I live in, and Virginia.

  7. Registered: Sep 17, 2010

    Posts: 0

    colorado springs, Colorado

    hi justin what you need to do is appeal the desicion that they cut you off because haveing pku its a life long thing not cureable so i suggest you fight it and get prior authorization and maybe that willl help . i live in colorado and im on medicaid too im 41 and they pay for my formula.good luck and god bless you .sara

  8. Registered: Jul 21, 2010

    Posts: 0

    Midland City, Alabama

    Thank you guys for trying to help! I will have to check on the NORD, but I have found a solution for now. My doctor helped me get on a medical assistance program that allows me to get my formula at a reduced price. Some others with PKU and I, are working on starting a support group for Alabama since we don’t have a PKU organization here. I am planning to bring this up at our first meeting. The meeting is on June 18th at 10:30a.m. at Birmingham if any of you live in ALabama and would like to come you’re more than welcome too! Just send me a message for more info. Once we get it started, I’m going to see about getting together with other organizations in different states. I’ll keep you guys posted thanks again for all the help!

    God Bless,

    Justin Baker

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