Keri

These are the kinds of situations that I brought up at the recent RiskMAP review of the TOUCH program. This is exactly what is NOT supposed to be happening anymore...I am furious for YOU...

I am going to copy your post and forward it to Biogen. To the person who is in charge of this program. You are NOT an isolated case.

You bet you should call the hospital. They cannot possibly be full. Call the infusion center, they also cannot possibly be full. The TOUCH people are not helping you, they are getting in YOUR way.

This is a system that is supposed to run smoothly and in your case it is obviously NOT...they - all of the - are adding stress to YOU and that is not what needs to be happening. The comment from your docs office was totally uncalled for. He's busy and sees a lot of patients? Geez, she needs a little course in how to talk to patients.

I am so sorry for what you have gone through. It is totally unnecessary.

The washout period as defined by Biogen/Elan is 2 weeks, not a month. Sounds like your neuro is being overly cautious, but maybe that's because he has so many patients.

Take care Keri and keep us posted.

I just received the results of my bloodwork for liver in the mail (only took 2 days -- had test on Thursday) and everything was within normal ranges. Yay! Now I have to be patient and wait for the results from the antibodies test.

Thanks for jumping in here Cheryl! Your help is appreciated yet again!

I had hoped that MSActivesource had ironed out the wrinkles since I started. I remember what I went through with them when I first started, and after three weeks they hadn't done a damned thing. The garbage about the paperwork that was sitting right in front of them, their little cheerful welcome call when I made the girl cry, the "oh yeah, didn't anyone call you yet about that?" etc.

This whole program doesn't seem to have improved. Too many people are getting the run around. Incorrect information gets passed out as fact. No investigation is done on coverage and co-pay. Faxes are lost. Med doesn't come. There's a different answer every time a new person signs up.

I am willing to do whatever I have to, to get this crap straightened out. If phone calls, letters or standing out front with a sign will work, please give me some input.

I'm putting together a timeline on what I have been through, between no information being available, different person every time I call, etc. My side of the ballgame is on top of everything. Infusion center faxes the stuff in front of me, Dr. signs and faxes in front of me, I get a copy with the time of the fax right on it, yet Biogen says again...we didn't get the fax...my pharmacist at the hospital keeps an extra vial on hand now because they can't get their thumb out of their backside long enough to fax the specialty pharmacy on time!!

It's gone on too long!

Keri,

I am sorry you are dealing with the incompetence of all parties involved.
You shouldn't have to go through this. I wish it could be as simple for you as possible. I was under the impression that things had improved. I know when I started, I had to do some major screaming to get things rolling, but that was a year ago! I'd forgotten what it was like to get the people at MSActivesource going. Your post reminded me and it makes me very angry that this is still happening.

Barb!

I am so glad that your liver is looking lovely! This means a celebratory glass of your favorite beverage is in order!

Please let us know how the antibody test turns out!

RW --

You and I both KNOW who we need to talk to at Biogen. I think it's time we did some politiking...I am game if you are...

Plus the fact that I am headed to DC in May for some political stuff to do with MS and I am sure Biogen is going to be there....shall we?

They are already know me by sight.

I'll call when I am done with this #$%^&*( Lexsquawk printer download that is supposed to already have a driver. I am 2 1/2 hours and 84% into the download on my wonderfast dialup....grrrr!

Ya give me heart woman! When more than one voice joins in to correct injustice and all that...I'm in.

Thanks RW, Barb, and AV8r...

I feel a validated a lot - which I didn't even know I wanted, or maybe, rather needed. If I may: Thank you.


I thought when the woman at neuro's office told me that he had many patients, etc. that I was being unreasonable for thinking that he shouldve signed the paper requestion authorization the same day he got it. Really, though, that his office even sent over the original TOUCH paperwork without his signatures really baffles me!

I tend to be VERY aggressive - I'm a New Yorker, afterall - and I can come on strong. I guess at this point in my life (being completely humbled by the MS right now) - I was taking it easy and just going with the flow (I live in Los Angeles now - so go with the flow is the mode here).... I just figured I'd sit back and let everyone do their work....and not be my usually pain in the ***** self.... Well - that's not gonna happen again.

Yeah, TOUCH really ****** me off in the first place - not sure I explained how they sat on stuff w/o the signature....so here is more of the time line - as they received my paperwork on a Friday - I called on Tuesday to make sure they received it - they said they had but it was missing signatures....the next day, according to them, they called the Dr. to get those signed. Well - when I called back a week later - they hadn't heard from the neuro - now - okay - so we can "assign blame" on the neuro - but why the heck didnt TOUCH keep calling my doctor?? How long would they have let it go on? When I called the doc, they said they didn't hear a thing from TOUCH re: no signatures. So, one week down there. Then you know the rest.

Now, I'm VERY new to all of this - being sick, the MS, etc....but the thing is - when i was growing up, my mother struggled with cancer - she went all over the country - tried every treatment - experimental or otherwise (we were actually shocked that by the time she died she hadn't started glowing in the dark or that she never grew a tail!)....anyhow - I'm pretty aggressive about medical stuff - I push my friends when they need tx, etc. I guess I will just return to being my old NYer self and get the job done.

I know the washout is usually 2 weeks - no idea why doc wanted 30 days - which is very interesting since I was only on Copaxone for 4 weeks to start with. But I must say - I filled out the paperwork for copaxone/shared solutions - and I was at my sickest - in fact - you could barely read my information as I was seeing double, etc. After that - I didn't do a thing to get the copax....I was home, sick, receiving my IVSM....Within 5 days everything was taken care of - they got approval from blue shield, they got me the meds...all I did was supply the credit card number one day. They made it SO easy....they sent the nurse out the day I received the meds. No problems whatsoever. in fact, my biggest complaint was the SS called SO many times to check in on me...it was getting annoying. LOL - actually, they called absurdly early in the morning until I asked them to mark my file not to call before 10am CA time (they were calling at 8am).

I am going to call the infusion center near my house. I know many people travel far to get the Ty....and I know that I would travel wherever I needed to - no matter how far away - but it's just crazymaking that there is a center a few blocks from my house and I can't go to it. It may very well be full....we shall see. Maybe I can sweet-talk them into it. My thought wasn't that the center was too busy - I wondered if TOUCH or whoever put a cap on how many can be given Ty at one place....and I imagine that many people are getting Ty at this location as it is across the street from the neuro's office - and this neuro is in a group that has the largest private MS practice in southern California, outside of the teaching hospitals.

So just another day...I will be calling my neuro's office on Tuesday to check on the insurance. actually maybe monday afternoon! I have always had good luck with Blue Shield approving my stuff very quickly. This time I will not sit around and wait to hear from someone!

Meanwhile - I hate that the IVSM gave me a false sense that I was improving from the flare up....It tends to help for a week and then I'm nearly as bad as I was in the first place...altho at least right now I can drive during the day because I can see most of the time.

Still not sure how everyone manages to live with it. I know it gets easier, supposedly, as time passes. I just don't know what to do to get the time to pass while being in so much pain or what to do in the meantime while the time passes. Does that make sense?

I hate being sick. I hate MS. Right now it does have control over me...it dictates what I can and can't do at any moment...and usually it's more of the "can't do" then can. (Well, I guess it's about time that I started to get angry.)

I'm glad this forum is here....it has helped me tremendously the last 8 weeks - not sure how I would've gotten thru a lot of this without being able to read what others have gone thru and experienced - and being able to share my story here.

Oh yeah, neuro gave me paperwork to get a baseline on all of my bloodwork, including liver panel.

~Keri

Hang in there Keri. You are NOT alone. RW and I do know people and this is just absurd what you are going through. I am going to make a couple of phone calls first thing Monday morning...and at least one or two emails to some of the top people at Biogen...this is totally NOT acceptable.

As RW, and some others know, I spent a lot of time putting together a very vocal presentation for the FDA last June that Biogen was less than happy to hear...about how their wonderful streamlined program did not work...I did get their attention. But obviously they have not followed thru with a lot of their promises to patients.

Well...I am the squeaky wheel, right RW???!!! LOL!

Psssst!

Keri?

If you go back to post # 2, you will understand that there are people who have BEEN through this whole thing from the very beginning to where we are now. You are not alone and there are people who can help. Hang in there, ok?