advocates for sleepXyrem

Discussion in 'Fibromyalgia Main Forum' started by jsshutt, Dec 5, 2006.

  1. jsshutt

    jsshutt Member

    I am trying to get ahold of anyone who can answer insurance questions for Xyrem. I am switching to an insurance that will cover it but need to know which ones will for Fybro. They (the insurances) wont exactly tell you. I cant keep taking all my Drs time apealing decisions in vain.

    Any suggestions? I'm in Connecticut.

    As soon as my dr qualified, Xyrem people who were, oh so helpful, were not very helpful anymore. Still cant figure that one out.
    We are all victims of big insurances and pharmacuetacals (spelling????)
    I need to work around them and we need to help each other.
    I am about as sick as I ever was and can bearly walk around the house or feed my three yr old. It all falls on Superman (my DH)
  2. PVLady

    PVLady New Member

  3. turtlesyndrome

    turtlesyndrome New Member

    I don't know much about Xyrem. But there are several posts about it on this message board. I would just do a search for it. I can't remember her name but there is a member on here that has had dramatic results with Xyrem, she has made several posts about it.
  4. jsshutt

    jsshutt Member

    Thanks, I have read all those indeed and they have been very helpful. Now I just need to switch to an insurance in CT that I know is lax enough to cover the cost. I have medicare but the price of $600 or so a month and what medicare will pay for that is still very high I believe.

    I wish people who are on Xyrem in CT and have insurance to pay would answer my posts, it would be very helpful.
    Thanks for your kind offer
  5. suzetal

    suzetal New Member

    Changing ins. co. wont help its Medicare that controls the ins. company .They let them know whats covered and whats not.

    For awhile Ambien was not covered.Now it is.If its not approved by Medicare than they wont cover it.

    May I suggest you call your ins. and see if its covered by Medicare P D if not your stuck till they approve it.

  6. abbylee

    abbylee New Member

    Interesting username. Have you talked with any of those folks? Or, have you done that but didn't get enough information?

    If you've not done so, I would call their toll free number and see if you can get answers, or call the central pharmacy that handles Xyrem.

    Hope you find what you need.

    I have BCBS and they cover 80% of the cost.

    [This Message was Edited on 12/09/2006]
  7. jsshutt

    jsshutt Member

    I dont understand? Medicare? Maybe someone else does?
    My insurance in Cigna but it wont cover Xyrem for anything other than Narc/Catap. Abbylee and another gentleman my dr treats have bc/bs and they say they only cover it for narc but they are more lax and did cover it for Fybro.

    I need to switch to an insurance that will cover it for Fybro and I need people who are patients who are covered for it to help me by telling me which insurances they have, like Abbylee did.

    My brain is deAD but I need to continue on...
  8. suzetal

    suzetal New Member

    Are you on medicare Part D for your scripts?
  9. jsshutt

    jsshutt Member

    no, not yet. I have insurance with a co-pay for scripts that is better than Medicare. So before I start Medicare, I want to make sure it will cover Xyrem, otherwise I wont't need it.
    Hope that helps.
    I did sign on or register for advocates of sleep to post but it still has not let me sign on.
    I would like to do the protocol for Vitality101 but am too sick to get all those pages printed and sent to my dr to to discuss it and see if he will work with me on it. It is so overwhelming when I catch the flu or a virus nearly every day.
  10. julieisfree05

    julieisfree05 New Member


    I'm the person who has posted extensively about my experiences with Xyrem. I have talked to the "Advocates for Sleep" people and they've always been wonderful.

    My Xyrem was covered by Federal Workers' Comp, but they take all types of insurance.

    Are you talking to the "counseling" people, or the actual pharmacy? The people in the billing section of the pharmacy were extraordinarily helpful to me.

    I think the AFS people are more for peer counseling on your experiences with Xyrem. The billing people are the ones who can make things happy, and they are at the main pharmacy.

    I hope this helps,

    - julie (is free!)
  11. jsshutt

    jsshutt Member

    I will try again. I did ask them and they said they could be of no help for that, they could only send forms to my Dr, they dont know individual insurance rules. But I guess if I tried again and said I was already a patient so that I could get past that person to the billing group, then maybe I could get some help.
    Thanks, I have read your posts, If I had the energy to write my experience, it would mimic yours.
    Steph in CT
  12. julieisfree05

    julieisfree05 New Member

    Prior to the Xyrem, I could never have written up my experiences like I did. I'm even working on a book right now until I'm able to get some Voc Rehab and return to work.

    I hope the billing people can help you. I spoke to them recently and they were very helpful.

    Good luck,

    - julie (is free!)

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