pending divorce with Tecfidera!! - re retirees

[SarahL2491]

Golly grab some coffee, tea or whatever your favorite is, Sarah's on a roll!

Ok, just got off the phone with Tecfidera.............calling my "visual" lawyer LOL

Here's the scoop and it wasn't in writing so I did enjoy backing them into a corner but got nowhere, just a confession.

1.  Retirees on VA and Medicare are NOT eligible for the great "free drug quick pak"  bummer...........
     So that lets me out for that to get started until the insurance dust settles

2.  Medicare is "still thinking" about whether to allow this drug into their formulary......
     a.  if they do, then they contact your medicare drug specialty mail order pharmacy for $$ price
     b.  I hammered until I backed her into a corner and she kept mumbling about help in the "coverage gap area"

3.  I then told her that the form we filled out did NOT say Medicare recipients were NOT eligible for quick pak, and I understood that we were not eligible for the $10 copay which was a slam against those who had worked so hard to get to where we were and now Tecfidera was penalizing us and
     she mumbled she would bring it up at the next meeting, that it was a work in progress (grrr) When I sit here half a         month waiting for 14 days of free quick pak drugs, its not funny!
  So I pressed on........you guys know me!

4.  I said well you need to bring up at your meeting that the "green" on your forms you fill out has to be changed; they  
     are difficult to read and even when I print it out in color, you can hardly see it (brand new inks for me and new
     printer) and she got a bit defensive but finally said she would pass it on (lordy I have to find the complaint
     address!!  I guarantee you she isn't passing on ANYTHING I said!!

5.  So figuring I was dead in the water with this one both because it would be at minimal, mid month of May before a
     decision was made for medicare/my specialty pharmacy, I injected into the conversation that I would now have
     to scramble to get my Tysabri reassigned and decide when and where I would be to get my May infusion (due in a
     couple of weeks. ) She just brushed that off as if it were a fly on her finger so I figured, nothing lost, nothing gained
     and I pressed onward,

6.  So I said (and this has been my sore point all along - vague descriptions of "help") well what if Medicare does not
     approve it or there is no $$ for assistance to me.......yeah..........she was reading from her "script book" and went
     into 5 minutes of how the process proceeds with medicare and how they will send it to my pharmacy and I just
     let her run, she did not answer MY question at all.  Like half of the people you talk to on the phone, she only heard
     the first half of the sentence and immediately went to forming her answer..........Sailersong would understand this!
     so.......when she finished this and was satisfied I understood, I went for broke

7.  "but you did NOT answer MY question.  I asked what happens if medicare does NOT help.......where are all of
      these programs of help you suggest but won't address"  What's out there for retirees?  I was eligible for 2 yrs of
      Tysabri free until I found a Medigap N policy that covered what Medicare did not.  She danced around it and
       finally I said "can you really answer my question?  Do you REALLY have any programs?" and she squirmed
      and said that there were none in place for us unless we applied for medicaid or went to a foundation because we
      were on federal programs"  Golly 2 weeks ago or even on their site would have been nice........

WTF didn't she say that 2 weeks ago, sorry I don't usually say that.................why isn't that on their page?..................golly, Tysabri is looking mighty good right now!  Like I needed HER information the day before surgery..........I told her about my surgery and she didn't even have the courtesy to comment that she hoped I would be okay.  She mumbled something like OK and I should call my drug coverage company and complain.......

So to all of you lucky enough to have insurance to try the drug........go for it and keep us informed..........but I fear that the co-pay for us on "the other side of the mountain" is going to be way too steep, even if they approve it.  I so remember Provigil being out of my reach and then filling half a prescription and cutting them in half and finally this year it went down to $85, which really hurt, but I so need it....

I'm not angry, just upset over the fact that no one will level with you up front and leave you hanging until you call and press for answers.  Even then, the questions that I asked, that I already knew the answers to, came back and were  pure "script" and I knew she didn't understand half the words she was reading to me.  

I finally said something like "isn't it fun to have nurses as patients, we insist on reading every word before we sign anything and then ask 50 questions" and she mumbled something like a laugh, I think she finally realized whyI kept pushing her for STRAIGHT answers...............ok, back under my rock, but wanted to update you guys in case anyone was, like me, waiting for the quick pak, which is never going to happen.

hugs
Sarah

[jen673]

Sorry to hear that Sarah.  I hate that it can cost next to nothing for one person to take a drug and cost another their leg and arm!  I was hoping we could be Tecfidera buddies :) lol

Glad you an stay Tysabri anyway.  It's a good DMD too.  

Jeny

[debgen]

Hi Sarah,

Wow, thanks for sharing that info. I am so sorry you have to deal with all this Medicare BS. I feel your frustration. I am lucky enough to still have my medications carried through my previous employer prior to retirement. However, having just turned 55, my primary medical insurance switched to Medicare A&B as my primary and BCBS as my secondary. Well since this has happened it has been nothing but a royal pain. I have an agency which is supposed to be the coordination of benefits but no one ever seems to want to take responsibility! Now I am paying 2 premiums and getting  less benifits with much more paperwork, phone calls and emails. :(

I am going to stick with Gilenya which is covered 100% by Novartis and luckily working great for me.

I hope things work out for you and others in the same dilemma. Pleas keep us posted on how things are progressing.

((( hugs)))
Deb

[HVAC]

I went through the same run around with Copaxone's assistance plan in 2009 and I have regular insurance. One day someone called me stupid on the phone and I quit Copaxone then and there. I quit all DMDs because I just can't stand being on the phone endlessly. I know it was a severe reaction but I kinda don't regret it. I have no patience with nonsense. I have MS I do not need the run around as well.

I went through the same thing with a non MS drug recently. I quit taking it too. They did not say there were exclusions until I had gone through a half hour on the phone.

Alex



Alex

[SarahL2491]

No, I'm not upset, I'm going back on my Tysabri and will try and schedule it on my way home, won't be "off" by too many days, just sorry I wasted 2 weeks waiting.

I totally understood that the $10 co-pay wasn't for anyone on VA, medicare, DoD, etc., but the form I signed did NOT say that for the free quick pak and they verbally offered that last time.  

So notified National MS site in case they get a bunch of calls saying people need financial assistance, cause unless Medicare produces a miracle and lowers the usual 35-40% co-pay, a whole bunch of people won't be taking it!  I figured it out and my co-pay (IF still in Tier 4-5) would be about $1,600 a month..................so why switch from Tysabri, when its covered 100% by Medicare B and N......?  

  I just think you need to have your "ducks in a row" before you start making promises and have people who understand what they are "script reading" and not just "read it".........grin.

Going to pack, gonna treat myself on the way to my home away from home tonight before surgery tomorrow............thinking apple and starbucks will be a nice treat (have some apple card $$ to spend)

[essdipity]

Wow, what a mess.

This is not unusual, however. The special deals offered by Big Pharma very often do not cover anyone whose drug insurance is provided by any level of gov't. Maybe not to anyone whose overall insurance is via gov't--don't know about this one.

I am very lucky that although I'm retired, I can get my drug ins. from my previous employer, a state government, just as though I were an active employee. No donut hole either, and no penalty for not going to Medicare Part D, because there is a letter on file demonstrating that my insurance is 'as good as' (actually better than) Medicare's for drugs. Otherwise I am on Medicare as my primary insurer, with BCBS as secondary.

I expect to go on Tecfidera within the next month or so, after my next MRI, though I haven't yet determined that my insurance will cover it. If not, no deal. Like nearly everyone else, I can't afford $55,000/year for one drug. Hah, I'd like to meet those who can. But eventually I'm sure it'll be covered.

If I were you I'd try not to be really worked up on this point. MS is a slow-moving disease, and a month or two without either Tysabri or some other DMD is not likely to make a huge difference.

Still, I understand your frustration.

ess