at a loss...

at a loss…

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at a loss…

January 26, 2010 in Uncategorized

Hi guys... I need your help.. I am sure someone on here will be able to advise me how to go about this problem... Well, about a year ago I decided to switch from taking 120 Phlexy 10 capsules (formula in pill form) to Camino Pro drinks. My insurance company is NOT accepting it as formula, but medical food. This was a problem in the past when I switched from formula to the formula in pill form. In NY (where I live), there is only a $2500 limit on medical food per year and unlimited coverage for formula. The district I work for has a health benefits coordinator and she has been trying to help me with this matter.... She told me with all of the information I've gathered (laws, product information, etc) I should be able to dispute this... well months have gone on and I've been given this formula from Cambrooke (god bless them!!!) and my insurance continues to ignore this... I am at the point where I reported this to the state insurance... because in NY this is 100% illegal... Now, I've come to find out I owe over $6,000. Great, right? What frustrates me so much is my biggest battle with my PKU diet has been drinking formula. I finally find one that works, and the one is not paid for by insurance. It simply is not fair. Formula is not something that can just be stopped. I've done that once before and became extremely sick from it!!!!! I am so tired of people not knowing what PKU is and not knowing proper treatments. So.... my question to all of you reading this.... I know many of you all deal with this too.... how do you go about it at this point when insurance denies covering it as a formula (when it really is!!!!)??? If there are any suggestions, please help because I am at a loss with where to turn at this point! Thanks - Katie

10 Reviews of at a loss…

  1. Registered: Sep 12, 2006

    Posts: 0

    Franklin, Wisconsin

    Katie I am so sorry you are going through this! Unfortunately I can’t offer much advice, because I have never had to deal with this. Have you tried talking to your doctor or dietitian to see if they have any advice for you? Good luck! If you ever need to vent shoot me a message.

  2. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    Thanks Breanna… Yes, it has been discussed, but that too has not helped. My insurance company is ignoring the SPECIALISTS and the company itself (cambrooke) and how they are classifying the drinks. Thanks :) being an adult simply stinks!!

  3. Registered: Jun 27, 2009

    Posts: 0

    , New York

    Kids can have the same issues. We too have problems with formula coverage in NY (ERISA loophole). Have you considered e-mailing Christine Brown from the NPKUA or Jeff Lewis who gave the talk at the Dallas conference about the Health Care Change? They might be able to offer you some guidance. In the meantime I have a case and a half of Camino Pro in my basement if you need it (Molly does not like it anymore).

  4. Registered: Nov 3, 2009

    Posts: 0

    , Massachusetts

    TALK TO KATHY AT CAMBROOKE FOODS!! I was in an insurance crisis (actually it was resolved the day I met you haha, so very recent) and she ended up calling them and straightening it out. Seriously, ask for Kathy specifically… you need to make sure your prescriptions differentiate between the two (and that you have two prescriptions if you are using the LoPro foods). Mine says something like “Medically required Low Protein FOOD AND FORMULA” for CamBrooke… but all of my times talking to them (my insurance) was wasted time, it wasn’t until Kathy herself called to get it situated. I am on CaminoPro too (as you know) and it IS covered AS A FORMULA… so it can be done, granted I am not from NY but, if you have formula covered, you should have CaminoPro covered. I think that Kathy from Cambrooke who has experience and knows exactly how to word it… is your best bet. Have you already tried that? Ugh I’m sorry Katie this is the hardest part of the diet sometimes when the good intentions are there. Please keep me updated… good luck!

  5. Registered: May 1, 2009

    Posts: 0

    Lee, Massachusetts

    I would have suggested Kathy also 2 people just this past months told me I could not use the greenlight program and one of them told me they did not even work with cambrooke anymore. Kathy called me after My dietitian called her and she said she had no idea what they were talking about. she called them directly and she had if fixed the next day…I live in Mass and am not buying the camino pro but i think i will try it when my son is older…what is your insurance carrier? I Have Blue Cross Blue shield

  6. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    Thank you for your comments and suggestions. I did work with Kathy, however my insurance would NOT give in. They are not recognizing it as a formula even though I have plenty of documentation stating it. After yesterday finding out my case has sent in the state for about 2 months because they didn’t know my insurance, I had better news today. The man I spoke with yesterday gave me no hope and left me feeling very upset and lost with how to go about this situation we all go through WAY too much. It looks like they have re-opened the case and I should hear something within two weeks. Please keep your fingers crossed. Gracie – I have Blue Cross Blue Shield too – but there are many different kinds of plans off of it. We shall see. I am anxious for this to come to an end ( A HAPPY END! ) I cannot thank Cambrooke enough for the support they have given me throughout this matter. Anyone from NY need state laws regarding medical coverage — contact me! I’ve got it!

    :) Thanks again guys — feeling a bit better today

  7. Registered: Oct 31, 2006

    Posts: 0

    Taylor, Michigan

    maby calling you clinic …. and if that dosent work idk …. i would write to the state and ask them if there is anythig that they can do i know where i live all of the formula and I am on 75 flexy 10 as well as u do. Now i split them in half i take the adult 2 formula ( drink) and i take 75 pills a day and i split them down the middle i take 8 scoups of the formula and i take 40 pills a day now ….i have a hard time with the formula on my stomach it make it uppset . I am in collage and it is hard to find what to do because it is hard on my stomach and i am trying new approaches to take all of my formula . I hope that you find a way but i hope that you can work everythihng out . try calling the dmc metobolic cent in detroit maby they can helpor if they can’t thery might be able to direct you into the right place …. hope tht everything works out for you

  8. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    thank you.. I finally got in touch with someone from the state regarding this… hopefully I will have good news soon to share! When I took the phlexy 10 capsules, they were hard on my stomach. Now, the Camino Drinks seem to be the right thing for me. I totally get the “stomach” issues with the various formulas. That is why I am so frustrated with this whole thing….. the one that works just happens to be denied for medical coverage!!!!!

  9. Registered: Dec 2, 2009

    Posts: 0

    Phelan, California

    Yeah I would say call the clinic see if they have any suggestions. That sucks I am sorry I know how important formula is and once you find one that works then to find out its not covered thats a bummer. I hope you get it sorted out keep us posted!

  10. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    thanks Steph.. just waiting on the state.. should be this week

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