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Insurance denied Valcyte treatment - what next?

Discussion in 'General ME/CFS Discussion' started by Antares in NYC, Sep 14, 2013.

  1. Antares in NYC

    Antares in NYC Senior Member

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    USA
    I just received an infuriating letter in the mail from my insurance provider. After an appeal from my doctor to approve Valcyte, they denied it claiming it's experimental.

    What next? What can I do? Am I going to need to deal with lawyers, just so I can get the treatment I need?

    I'm so angry and frustrated right now.
  2. Kati

    Kati Patient in training

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    Would you qualify for patient assistance from the company? They need insurance denials ( twice) and a salary less than 100 000$. Keep your paperwork, denial letters, etc.

    Let us know how it goes.
  3. vamah

    vamah Senior Member

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    Washington , DC area
    I know how you feel. I wish I had some advice to give you, but I just don't. My doctor had told me that he would send in the insurance form for valcyte, but I should expect it to be rejected. They surprised me and approved it (for how long, I don't know). I hope you are able to work something out.
  4. minkeygirl

    minkeygirl Senior Member

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    Left Coast
    If your doctor is willing to write an RX for you, and you can manage it you can find it overseas. I know where I get my acylcovir if you have an RX it's cheaper.

    Also Kati is right. Most pharmaceutical companies have what they call Patient Assistance or Indigent plans. Usually you can't have insurance at all but you can try. And this site says you can be denied to qualify. Look around for others.

    http://www.needymeds.org/drug_list.taf?_function=name&name=Valcyte
  5. SOC

    SOC Moderator and Senior Member

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    USA
    Valcyte is experimental for ME/CFS. It is not experimental for HHV-6 or CMV infection. If your doctor has diagnosed you with either of those infections, you should pursue this with your insurance company. They have denied you incorrectly. Your doctor should be able to intervene for you.

    OTOH, if your doctor prescribed Valcyte for ME/CFS, you're SOL. In that case you could buy from overseas if you can afford it.
    vamah likes this.
  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    australia (brisbane)
    Sometimes it works better if your doc loses the cfs/me diagnosis and just use cmv or hhv6??
    Kati likes this.

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