beyond frustrated!!

beyond frustrated!!

Avatar of Katie

beyond frustrated!!

April 6, 2010 in Uncategorized

Hi guys.. I've been wanting to write on here for awhile regarding what I am about to tell you, however I was waiting hoping to have an outcome to this neverending issue.... A little over a year ago, I decided to switch formulas around. Before 2002, I was drinking Phenyl-Free powder formula and hated it and eventually stopped. I got really sick from not drinking formula. When I went to college in 2002, I decided I need to make a big change or I was going to fail out of college immediately with the drastic effects I was experiencing from not drinking formula... I decided to take 120 Phlexy-10 capsule pills -- formula in a pill form.... Of course my insurance did not recognize this and I had to fight insurance about it. Quickly, it was resolved once I submitted an appeal to the state with all of the NYS laws stating that all formula for PKU is considered "enteral formula" and my insurance MUST cover it. They wanted to consider it solid medical food - and in NY that puts you at a $2500 limit per year.... Well, eventually the 120 pills per day became hard on my stomach and I pretty much stopped. I knew I had to try something else. Last year I found it... it is Camino Pro... Well, my insurance once again has continued to ignore the fact that this is an enteral formula and NOT medical food. They pulled the same thing of placing a $2500 limit... I have been arguing with my insurance company since May 2009. Finally, when I went back to work in September 2009 (I am a teacher) and this issue was still not resolved, I decided to continue pursuing it.. with all of the documentation I had -- NYS laws, doctor notes, classifications of the formula from Cambrooke Foods -- they continued to ignore all of it!!! In November 2009, I decided to submit an insurance appeal to the state. I did not hear anything back so again resubmitted it in January 2010 and finally spoke to someone. Since January, they have continued to tell me they are still "working" on the case. I was told there is a time limit of 15 days -- however they seem to not be following it... I am BEYOND frustrated as I have a bill of over $6,000 I owe to Cambrooke Foods. I have not been given any solid feedback from the state -- simply "they are working on it." Does anyone have ANY suggestions of how to continue going about this? I am going to be contacting the attorney general and possibly contacting John Hall's office and following a American Disabilities Act path.. All suggestions and comments open... please! Thanks, Katie

13 Reviews of beyond frustrated!!

  1. Registered: Jan 5, 2009

    Posts: 0

    , Nevada

    could you tell me more about the formula pills please

  2. Registered: Feb 1, 2010

    Posts: 0

    Tucson, Arizona

    I am easily brought to tears when dealing with the formula/insurance issue. I’m sorry to hear of your struggles. I wish there was someone who could enforce the so-called “laws” that are passed on our behalf. I helped fight to get the bill passed in AZ for formula coverage back in 2000 only to find out that my insurance company was an “exception” and so my Phlexy-10 pills were not included either. When I got married, I switched over to Tricare through the Air Force (my husband is in the AF Reserves) and with my first written appeal, they approved my Phlexy-10 tabs. Immediately prior to that, i was mixing MTE Amino Acid Blend with kool-aid because the Amino Acid Blend was approximately 1/2 the price and I was paying out-of-pocket! No advice, just sympathy. I’m sorry!

  3. Registered: Sep 12, 2006

    Posts: 0

    Franklin, Wisconsin

    Katie I’m sorry to hear you’re going through this. I wish I could do more aside from telling you that I hope things work out and being around if you ever need to vent, but when it comes to insurance issues I’m clueless. 

  4. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    Thank you guys… Kristi- the problem is that most of these places are telling me the formula falls under the catergory of solid-medical food… and that an enteral formula (which is fully ocvered in NYS) is only those that are administered through feeding tubes.. Not only have I obtained documents from the clinic and Cambrooke Foods itself, but also the legal definition as well!!!!! I am so aggrivated!

    One thing I meant to add before… Cambrooke Foods has been extremely supportive with providing me my formula while trying to settle this NEVER ENDING issue with the state

  5. Registered: Jun 27, 2009

    Posts: 0

    , New York

    Hi Katie
    Have you tried contacting Jeff Lewis for advice? He was the speaker at the NPKUA conference in Dallas who specialized in health care/prescription drug coverage. He might be able to guide you through the process a bit. I will send you his e-mail address.
    Good Luck.
    Brenda

  6. Registered: Feb 1, 2010

    Posts: 0

    Tucson, Arizona

    I had that argument used on me at one point–honestly I don’t remember anymore which insurance company pulled which claims. I believe it was when I first started on the insurance I am on now. Fortunately, I only needed to send a prescription, a letter of necessity from my PKU dr. and a few years back my last PKU dr. gave me a copy of an article in the american academy of pediatrics journal stating how important the formula is so I usually throw it in my packet to insurance companies for good measure. To my surprise, my insurance company approved my formula immediately (but didn’t bother to tell me about it until I called a month later to inquire as to whether they had recieved my appeal!). Sounds like maybe this Jeff Lewis guy might be a great resource! Brenda, I may be asking you for that name again if I ever have to switch insurances!

  7. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    thanks again :)

  8. Registered: May 10, 2006

    Posts: 0

    St Albans, INTERNATIONAL

    Hi Katie,

    Over here in the UK financing a PKU diet can be costly as well, we have a system where a few decades back a list was formed of conditions which were going to recieve financial aid and PKU was never a part of that list. Back then it was probably too little known or understood. Thankfully though we do at least have the NHS who pay a large majority of the costs but we don’t recieve any more help than anybody else in the country whereas if I had Diabetes I would get all sorts of financial benefits which is kind of sucky. Sounds like you folk in the US really have it tough. :-(

    Hope it works out,
    Jamie

  9. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    Thanks Jamie. It is definitely frustrating. I always think to myself how unfair it is that just because PKU is not as common, we do not receive support as much as those with diabetes… Do you have PKU yourself?

  10. Registered: Apr 23, 2010

    Posts: 0

    Arlington, Texas

    I understand your situation completely. As a parent of two children with PKU, the insurance side of this is extremely frustrating. A couple of things that we have used that have helped- 1) We have contacted the HR department of my husband’s employer. They often have a contact higher up in the insurance system and will go to bat for you, especially with all of the documentation you have. 2) We have contacted the governing insurance body for our state (Texas) to get information about our rights and also to file a complaint. Once the complaint is filed ( or even before) we have contacted the insurance company to let them know we are filing a complaint with the state regulatory agency- that usually gets us passed up the chain to someone who can help. They don’t like complaints filed against them. 3) We rarely talk to the first representative we get on the phone but asked to be passed to supervisors until we find someone willing to help ( you gotta be nice here- you want them on your side) 4) We have sought legal counsel and had help from an attorney to write a letter threatening legal action. It was very helpful at this point to mention all of the bad things that happen when a person is not on diet and receiving formula. They do not want the publicity of a valid claim being denied while the person suffers needlessly. I hope this is helpful- it really is a pain- we have $1500 outstanding now that we are fighting over. Good luck and keep fighting!
    Jodi

  11. Registered: May 10, 2006

    Posts: 0

    St Albans, INTERNATIONAL

    Hey Katie, yes – I have PKU and have just gone back onto diet today! :)

    Jamie

  12. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    Jamie… Great to hear! Keep up your hard work!! It will be worth it :) be proud of yourself

  13. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    Jodi.. Thank you so much for your advice and encouragement to stay fighting.. I have pretty much done everything you have told me already… HR in my job tried helping alot, but it was simply not enough.. I really have the insurance company — I found a previous incident similar to mine and the insurance company was fined (I want to say about 50,000)… I did seek an attorney and even though it would be 5,000 I also found that the insurance company would have to pay for that as well in the end…. I decided since I have majority of the documentation needed on my end already, not to pursue a lawyer. I jumped right ahead and filed a complaint with the attorney general in NY. I filed both consumer complaint and a civil rights complaint… just a quick update for everyone…… The attorney general called yesterday to tell me they tried contacting my insurance company, but the executive director was on jury duty… this has been ongoing for a year, I will NOT give up fighting… that is what they want, but it is not happening!!! I hope everyone else continues to fight too and don’t give in to what they want… us to give up

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