Frustrated!

Frustrated!

Avatar of Katie

Frustrated!

September 23, 2009 in Uncategorized

I am so frustrated with insurance companies! I have been trying to get an answer from my insurance company on coverage for my formula. The problem is the company who sells my formula AND my clinic states that my formula (Camino Pro Drinks) are "enternal formula" which in NYS must be paid as a medical benefit without limit. Unfortunately, my pharmacy insurance is saying that this type of formula is not enternal which means it is a medical food and I have a limit of $2500. I am so annoyed because ALL of my past formulas including my Phlexy 10 pills have been covered in the past!! The reason I am sharing this information on here is because no matter how frustrated and annoyed you get with them, DO NOT give in to their scam and give up on fighting. I demanded they give me the process they said they have gone through in paperwork so I can bring it to my clinic - who are the TRUE specialists determining whether or not Camino Pro is enternal. My next step is contacting the NYS senator and reporting them because truely they are violating NYS law! grrrrr! And I am sure I am not the only person on here who deals with this issue way too often!

13 Reviews of Frustrated!

  1. Registered: Sep 22, 2009

    Posts: 0

    , Pennsylvania

    Hey Katie
    I met you at the zoo in Pittsburgh, Pa. I have no chance to ask you some questions. So I decided to join Pku.com.

    I cant understand why your insurance company wont coverage to pay formula. I thought insurance co provided what PKU people needs. I suggest you talk to the doctor and stay fight till aprpove.

    I think should not worry everything because they said same thing with Kuvan. Did you even try Kuvan?

    Carrie

  2. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    Hey Carrie – I wish I got to speak with you in Pittsburgh. I am glad you joined this and found me :)

    The funny thing is that ALL of my formula in the past has been covered. Each time I have changed formula, they have given me a huge fight like this. In the past, it has been resolved. Unfortunately, this time it is taking much longer! I definitely will not back down. Thanks for the encouragement. :)

    Yes, I have been taking Kuvan for almost 2 years (in December). It has worked for me great! How about you?

  3. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    Carrie – I didn’t even realize it was you until I opened your page!!! Silly me – I remember you now!

  4. Registered: Sep 20, 2007

    Posts: 0

    Woodbridge, New Jersey

    Good luck with your fight. this probably doesn’t mean anything to you, but at least you can get treatment. i don’t have that luxury.  

  5. Registered: Sep 20, 2007

    Posts: 0

    Woodbridge, New Jersey

    The problem with insurance companies is that they don’t know what PKU is.

  6. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    Patti – you are exactly right that they prob have no clue what PKU is! And I said that to them… do you really not believe what the SPECIALISTS are saying? grrr – Why can you not get treatment?

  7. Registered: Mar 1, 2008

    Posts: 0

    Ithaca, New York

    I am also having trouble getting Camino Pro with my insurance. My Nutritionist at Strong had me fill out an application for NORD ( rarediseases.org ). I sent in this application for assistance from them a couple of weeks ago. I have not heard anything yet.

  8. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    Chris – what state are you in? I also have found the people from Cambrooke (who sells the Camino) to be extremely helpful. I am sure NORD will get back to you soon. Why don’t you call them to follow-up?

  9. Registered: Mar 1, 2008

    Posts: 0

    Ithaca, New York

    Im in Ithaca, NY. Actually not that far from Cornwall. Well,…… Okay, more like 3 hours or so away. I e-mailed my dietician yesterday. Since I am just started Kuvan, she wants to wait a few weeks before putting me on Camino Pro or ordering anymore low Phe foods.

    That’s another frustration of mine with Insurance companies. They pay for so little of the low phe foods. Most months, I run out of food after just a couple weeks and then have to buy more out of pocket or eat more regular food, which ends up spiking my levels a bit !

  10. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    Chris.. In NY, they must provide you with a limit of at least $2500 per year for medical food… also, I am fighting that the Camino Pro drinks be considered “enteral formula” because in NY enteral formulas must be paid for by insurance companies… My insurance company is trying to tell me that is a medical food (when the specialists say it is not) which than would max me out and I would have to pay at the very least $2800 out of pocket.. so frustrating!

  11. Registered: Mar 1, 2008

    Posts: 0

    Ithaca, New York

    Yeah, $2500 per year. Thats works out too approx. $208 per month. Sounds like a lot, but you have to admit, the cost of Low Phe foods add up quickly.

    $2800 per year for the Camino Pro ? Hmm, my dietician told NORD that my need for Camino Pro was $750 per month ( $9000 per year ). Either thats an under estimate or my dietician thinks I need more protein each day. How many mg of protein does your suppliment provide for you. I know the Camino Pro drinks supply 15 mg protein in each containter.

  12. Registered: Oct 1, 2009

    Posts: 0

    Tucson, Arizona

    i know how that is bc when my son was brn they told me that they were only going to cover 1/2

  13. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    I am still continuing to fight them over this matter… I am just about to threaten them with going to the state senator.. I am giving them one more week… As of 2 weeks ago, they told me they were re-evaluating my formula to determine it is an enteral vs medical food… One week until I report them! I am so tired of them trying to scam ppl… I hope all is working out with your son!

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