I think the insurance companies are unhappy with this as well. My insurance company is now dragging their feet about getting me approved for the TY. When i spoke to the neuro's office today they said that all of the insurance co's are being slower to approve TY even for people already on it. She thinks it may be because of Biogens refusal to disclose information to anyone who is not a shareholder in the company.

So again, the withholding of information is coming back to bite them--withhold info and patients start to go off the drug or never start. Withhold info and the insurance companies decide they don't want to pay.

We just got home and I chose not to get my infusion today. The neuro spoke to me for about an hour. I'm going to go back in three months and talk about whether I want to go back on Tysabri, or go on something else. I'll check back in later with more details. I have another appt this afternoon and won't be home until later on.

Ok I agree users should know but please let me get mine 1st? :)
Death is certain for me if I progress at this rate anyway so I'll take the chance.
Good luck getting Ty back if you cause bgen to cease production.
See..you made a choice not to get it. Great. But i'd like the choice to get it.

Edife,

You'll be able to get your Tysabri, don't worry. :hug: :hug:

But if I cause them to cease production, then I'm going to apply for jobs in higher places because I'm seriously underestimating my own power and influence, lol. Maybe I can run for governor of Illinois? :lookaround:

:ROTFLMAO::ROTFLMAO::ROTFLMAO::ROTFLMAO::ROTFLMAO: :ROTFLMAO:

:Noooo: Nah, I guess not.

I would vote for you:)!

my neuro is pushing me to chose T. for years now they asked me to not consider it, and stay on the first line of defense DMDs and blah blah. now, they are doing a hard sell to me! I am getting letters from Biogen and Touch, and I have stated to my MD i DONT want to go on TY right now. He wanted to talk to me about PML and had this whole speach prepared. sounded pretty rehearsed to me, but when he was done (couldnt get a word in edgewise) I said so, PML is 1:1000 ratio? well, in my humble opinion its either 100% or zero, there is NO middle ground. If YOU get it, its 100% and if YOU dont get it, then its Zero! There is no grey area in my own mind about this. I asked why they have stopped public reports about such cases being discovered, and got this whole speach on how fear based media reports are causing unnessecary panic in the general public, who are not educated enough about ALL the facts to understand the "true" implication of what such reports mean...

Even tho I have firmly said NO! it seems as tho they are romancing me.

They know you're a friend of Wiz's and the want you to replace the place in their wallet/heart..:D

Is it possible your neuro gets kickbacks from Biogen? I have never had a neuro or any other physician push me to take a certain med.

Biogen would definitely be playing footsies with you as you are a possible hunk of $$$.

gmi

Yesterday my doctor was telling me how many of the hospitals and clinics doing the infusion are charging thousands of dollars each month (this really bugs him a lot). He said if a clinic charges $10,000 per month per patient and they have 100 patients getting Tysabri, that increases their revenue by $1,000,000 per year. That's an interesting way of looking at it.

He said that when the orals come out, the sham doctors will be easy to identify because those will be the places that are still pushing Tysabri aggressively.