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Thread: Tobi Prescription Roadblock, Please Help!

  1. #1

    Exclamation Tobi Prescription Roadblock, Please Help!

    For the longest time I had a Tobi nebulizer prescription with the understanding that I'd take a month long dose, followed by a month off, and go on it for a month again, etc. The pause times for treatment procedures was to not over tax my kidneys and so forth.

    However, the great doctor I once had at my CF center no longer works there, and it's subsequently been a while since I've visited a CF specialist clinic. However, I do have a great GP, and his team has been diligently working for me on getting my Tobi prescription refilled. Yet, the pharmacy is denying the request because they say I don't have proof of any need for it. My GP's team is appealing this decision and fighting hard for my sake.

    My biggest question is whether any of you have been forced to deal with a similar situation before, and what advice would you offer? My current pharmacy provider is CVS, and I can't help but think how less troublesome this would all be if my insurance allowed me to utilize the actual CF Pharmacy instead.

    Thank you ahead of time for any and all assistance.

  2. #2
    Has your GP run any CF cultures? The biggy would be if you're culturing pseudo, or enterbactor choclae or any other bug that is sensitive to tobi. I'd think that would be an easy way to prove you need it.

    DS has been on tobi forever and hasn't cultured it for awhile, but our insurance doesn't require Prior Approval, like sounds like the case for you, but does require going thru a specialty pharmacy. I have to go thru a chain, but don't have to do mail order, I am able to pick up his script at the local white drug, as is the case with his pulmozyme, too. Have you checked with the CF pharmacy to see if they can help facilitate your request even though you use a different pharmacy?
    Parent to a child wcf double delta f508.

    Started Orkambi July 2015
    Began Symdeko August 2018

  3. #3
    Novartis Patient Assistance (the makers of Tobi) might be able to help:
    https://www.patientassistancenow.com/

    CFF Compass is another resource:
    https://www.cff.org/Assistance-Servi...ation-Compass/

    On another note: I'm not sure what your mutations are, or if you're already on a modulator like Kalydeco or Symdeco, but many insurance companies only accept prescriptions from a CF specialist for these types of drugs. I'm not sure if this is the case with your insurance. If you're not on a modulator yet and you have one Df508 mutation, you'll be eligible for Vertex's triple combo if it's approved (hopefully sometime in 2019). Many that have been in the trial are reporting life-changing results. So just thinking ahead---it might be a good idea to visit with a CF clinic at some point, that way you'll be all set and won't have any roadblocks if your mutations are eligible for triple combo. Here's a link to help you find different CF clinics in your area: https://www.cff.org/ccd/
    Sorry for the unsolicited advice on this, but just thought I'd mentiion it

    I hope you get the Tobi prescription covered soon!

  4. #4
    I agree with Jricci...some insurances won't cover certain meds if it's not written from a specialist doctor who sees you for what you take. It kinda makes sense, you're not going to get coverage for a drug if you're not seeing a specific doctor regularly who specializes in the use of these specialty drugs.

  5. #5
    Quote Originally Posted by kenna2 View Post
    I agree with Jricci...some insurances won't cover certain meds if it's not written from a specialist doctor who sees you for what you take. It kinda makes sense, you're not going to get coverage for a drug if you're not seeing a specific doctor regularly who specializes in the use of these specialty drugs.
    The funny thing is that my last two prescription refills were signed by my pediatrician of all people (Their entire practice became so close to me, that they acted as my GP until they retired).

    The one thing that's changed within the past year is my pharmacy, though, and it's been quite hellish with two major hiccups so far (Twice this year they mistakenly believed my insurance coverage had been dropped, and both times it took weeks to get everything corrected and my prescriptions reauthorized).

    I'm definitely working on getting back to a specialist, as there have certainly been numerous CF breakthroughs that I'd like to stay on top of.

    Thank you both, for the info and encouragement!

  6. #6
    Quote Originally Posted by Ratatosk View Post
    Has your GP run any CF cultures? The biggy would be if you're culturing pseudo, or enterbactor choclae or any other bug that is sensitive to tobi. I'd think that would be an easy way to prove you need it.

    DS has been on tobi forever and hasn't cultured it for awhile, but our insurance doesn't require Prior Approval, like sounds like the case for you, but does require going thru a specialty pharmacy. I have to go thru a chain, but don't have to do mail order, I am able to pick up his script at the local white drug, as is the case with his pulmozyme, too. Have you checked with the CF pharmacy to see if they can help facilitate your request even though you use a different pharmacy?
    It's been a while, but the main reason I was prescribed it at the time was due to a minor level of infection regarding pseudo. Since then it's also saved me twice from pneumonia infections (Completely cleared it up both times).

    I will definitely check with the CF Pharmacy.

    Sometimes I definitely miss being able to pickup more of my scripts at the local pharmacy, as IME we developed a great relationship with an extremely solid pharmacist. It's certainly a less personal relationship over the phone or email, especially when it may not even be the same pharmacist each time.

    Thanks for the info and advice.

  7. #7
    Quote Originally Posted by KingJames View Post
    It's been a while, but the main reason I was prescribed it at the time was due to a minor level of infection regarding pseudo. Since then it's also saved me twice from pneumonia infections (Completely cleared it up both times).



    Sometimes I definitely miss being able to pickup more of my scripts at the local pharmacy, as IME we developed a great relationship with an extremely solid pharmacist. It's certainly a less personal relationship over the phone or email, especially when it may not even be the same pharmacist each time.

    Thanks for the info and advice.
    I hear you. Our primary pharmacist is a relative and for awhile he was a specialty pharmacist, but the hoops they made him jump thru were just too much, so we had to switch the pulmozyme and tobi to a specialty pharmacy. He still provides all other medications.

    Meanwhile, I'd doublecheck with your GP's office and insurance. See what documents insurance is requesting and ask for copies and then verify with your clinic if they were in fact sent the same documents, ask them for documentation regarding when and what they sent back. I went thru a similar experience with our former CF doctor and prior approval for DS' orkambi. Insurance pretty much was just playing games for 3 weeks. Claimed the clinic didn't send back the requested forms, claimed they were sent the wrong forms (forms insurance had sent them in the first place). It was a mess. I finally asked the clinic to fax me everything they received and sent and contacted insurance with that information. Suddenly I had a script within a couple days.
    Parent to a child wcf double delta f508.

    Started Orkambi July 2015
    Began Symdeko August 2018

  8. #8
    Go to a CF CLINIC!!!!
    Male 79 CF undetected until age 47. (First symptoms at age 3) Delta F508 & V562I with one copy of Variant 5Tand 12T. 100% PI. MAC, CFRD.

  9. #9
    If you need a month of Tobi (300mg/5mL Ampules) to tide you over, email me- [email protected]

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