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  • andiseals
    I'm so sick of the round and round blame game and lack of responsibilty between Neuros, Insurance, and Medication Reps (Gilenya)
    ​I stopped Aubagio Feb 26th. Had my follow up with Neuro, EKG, and Opthomologist appnt on March 8th. It took Gilenya Go program weeks to reach out to me so I had to call them to find out my rep was on vacation... Wound up not getting to schedule my first dose observation until April 28th. Still havent heard my reps voice and 90% of the time I have to contact them to get anything done. So I contact them on the 27th of April to ask about Copay assistance. they tell me My insurance will pay 50% and to call co pay assistance my debit card should be mailed that I qualify. I call. I get told I need to "stop talking to the Gilenya go program about my copay assistance benifits because Im not approved for anything" and to call back after my first dose observation. I call Gilenya Go program on the 29th and let them know all went well and ask what to do about the rude copay assistance. was told they would take care of it and call me back that afternoon or monday morning. never called.  co pay assistance FINALLY calls today and tells me all I have to do is call and order my medicine with my insurance (I only have 7 pills left) I call insurance and they still have me under Aubagio even though I have a letter saying they have approved me through 2020.... Said I need to take it up with my neuro office. SO call neuro office. keep getting voicemail. leave voicemail stateing I have an insurance matter that needs to be taken care of and to return my call. NO CALL.
    Looks like I'll have to go through 6 hour observation again at this rate and I had to wait almost 2 months to get the last one set up.
    Sorry for the rant. some times ya gotta vent.
  • connief59
    This is just wrong in so many ways.  Its bad enough being sick without having to go through all of this hassle.  I'm so sorry.  I feel your pain.  Hang in there!!
  • cjtmn
    I totally get it - starting on a new DMD is SO FRUSTRATING! Not only do we have the anxiety over how we will react to a new med, but we have to call everybody & their brother and then play super sleuth to string the pieces together just to get anything done.

    My blood is boiling for you. And I'm recalling my own experiences, which were similar to yours in many ways (I'm on Plegridy).

    Ugh, Ugh. Double UGH!
  • moneyp
    Hi I see that you are on Plegridy, I start in five days and am really freaking out. The Ms world organization site has more people chatting about Plegridy than here, so I'm really hoping you can tell me what to expect and how to curb side effects. So many people (of the few I found) were on avonex or Refib prior so they were used to the side effects or said with Plegridy they were worse. I'm brand new at all of this and starting out with the one that seems very powerful. I am struggling as to do I take advil, zyrtec, use a topical, prepare for the worst and I'm starting to get really overwhelmed. Can you offer me any straight advice on this drug? So many people started it and after the third dose or fourth they were done.
  • maria1
    next time you leave messages, imagine you are speaking with a human and say as much info about the problem as you can so they do not have to call you back to find out what you want, and they can instead work on the problem.

    and vent is good, dont have to apologize, it helps us all learn, thank you. 
  • andiseals
    Update: they never returned my message yesterday about adressing the issue at hand nor this morning so I called again only to get the voicemail AGAIN so I left a more detailed (and probably more upset voiced) message) to return my call again. I got a call back from neuro office at 6:30pm asking if the insurance had called me yet... I let them know they had not and that I even contacted them again in hopes that the issue had been resolved and I had jyst been forgotten only to find out their phones where down for Cinco De Mayo! She says "I talked to them this morning and your script has been ready are you sure you called the right number? YES I had called the right number and everything above happened as said plus the copay assistance wanting me to "lie to my insurance company about the debit card they send to me with $3,000+ to pay for my script" each month. I call again and follow propts neuro office gives to get me on phone with someone to order my medicine. It will be here May 10th!!!! And my insurance is paying 100% so the copay assistance program that was so rude to me at first saying I wasnt approved for anything and then saying I was approved for a debit card if Id lie can kiss my butt! Tomorrow will be a good day. Im tired of letting this all drag me down.
  • maria1
    HOLY COW! it didnt take a hundred calls to get results. MY OH MY, you lucky duck. lol. most of the time it takes forever. bravo
  • speedyguada
    completely understand! it is so frustrating dealing with the back and forth of insurance and medical offices and snotty people on the phone :( for a disease like ours that we shouldnt be stressed out...... it sure is stresful