tysabri touch programs

Hi and thanks in advance. I got financial assistance from Tysabri, but after having 3 infusions, finally got an invoice for the first infusion. My responsibility is over $350. No way can I afford that every month. Avonex cost me around $25 a month. I was on that for 14 years. Not so sure about this whole thing yet. Does anyone have any ideas about the best way to get financial assistance: from the hospital where I get my infusions or directly from Tysabri?

Where I live, there is only once infusion center that is approved by the TOUCH program to dispense tysabri. It is a cancer center owned by a large corporation. They first told me that it was going to cost $400 a month to get the infusion (out of pocket...after insurance and up until I met my max out of pocket with my insurance). Well, that was a lot of money to me.

there are excellent patient assistance programs for all of the drugs. Your insurance may have turned down the Tysabri request at first because they normally want you to try something different, first. It is seen as a second line therapy after the first ones don't work. Now that you can't do copaxone, your insurance should revisit the request and hopefully approve it. I went from copaxone to Tysabri without doing the interferons.

I'm not sure about how different ins would deny/approve coverage on a dx's. my doctor and i have never had discussion on 'exact type' m.s. dx's. HOnestly, I have never asked and he just writes rrms. he wantns to keep me on any treatment possible, and this has worked for us. Being on tysabri my medical (Medigap Plan F) picks up the innfusion, and i aam in the access program in biogen. Being pos. for j.c.

Are any of you on Tysabri? My doctor has suggested that I consider starting Tysabri treatment. His neurology practice runs a TOUCH infusion center. I've been on Copaxone for four years and have just had my first flareup. My recent MRI shows progression of MS with T2 hyperintense white matter lesions in the pons of the brainstem and the frontal lobe. Several of the older lesions have increased in size. Five years ago I was on Avonex. I had multiple flare-ups the whole year on this med.

The Common Drug Review advises whether or not a drug is cost effective and should be covered by public drug programs. Provincial drug programs then use this information in making their decisions. It should be noted that Quebec conducts its own review, independent of the CDR. Please call 1-800-268-7582 for additional information on reimbursement in your province. For additional information about Lemtrada, please contact MS One to One™, at 1-855-MS1-2ONE (1-855-671-2663).

I'm just curious .... For any of you who are on Tysabri, I was wondering if your neuros had changed their treatment plans or recommendations because of all the new PML cases and the acknowledgement by Biogen and the FDA that risk goes up after 24 months. I hear some are now pulling their patients at 18 or 24 months. I saw my neuro yesterday, and we discussed it in detail .... we are staying the course at this point, which made me very happy. (I go for #18 in a couple of weeks.

Does anyone know about any financial assistance programs? I'm in Arizona. My neurologist wants me to take Tecfidera and just found out that I'm not eligible to get the $10 copay because I'm on MEDICARE. Been on SS disability since 1992 and have take four of the injectables for MS. Had to stop all of them because of side effects.

So the question has to asked of your neuro. Tysabri is only given under the surveillance of the TOUCH program. One of the requirements is no other immune-suppressing or modulating meds are to be used. High dose steroids are VERY immune suppressing, but I don't know the specific rules. So, your neuro has to check this out and decide. I suspect you cannot have them within a few weeks of the Tysabri infusion. I am not 100% sure of all this, but it should be checked out.

So I went to another expert who agreed with the first doctor that treatment was called for and recommended Tysabri or Copaxone or Gilenia. I chose Tysabri because both doctors recommended it. I decided to stay with the second doctor because he was much more informative and helpful than the first although he works alone. The first doctors was a bit brusque. However , it has been almost 5 weeks since the paperwork for the Touch Program was started and i have heard nothing.

Of course you're a lab study - unfortunately a Tysabri TOUCH study isn't going to give you the kind of neurological care that you're needing. And it sounds like the people you've been seeing don't know much about MS, which is unfortunate. That the study excludes spine MRIs is also unfortunate - you'd think that they would include that information. But I can understand why.

Know its been approved for its opening day in March. If anyone goes on it, will you contact me either on the post or by PM and let me know what the "going" price is with insurance. I can't find it anywhere on Medicare D formulary lists so don't have a clue and don't want to switch programs until I know. I have just finished my first year on Tysabri and want to consider options for later but they won't give you prices until you have switched.......

After being withdrawn from the market, Tysabri was brought back under the TOUCH program (which is strictly controlled by the FDA), and the thought was that if Tysabri was used as a monotherapy, the risk for PML would not be as significant. Unfortunately, this proved not to be the case. At the end of July 2008, it was revealed that there were 2 new cases of PML in Europe - in people who were on Tysabri as their only treatment.

He decided to send me to UCSF to enter the TOUCH program and take Tysabri. UCSF is 250 mi away and not exactly a place I want my primary care neuro to be. I had a 6 month follow up with my primary neuro that sent me to UCSF and he is acting like he is no longer caring to see me as I am being taken care of up at UCSF. I am in a flare and with Tysabri you have to go through a big process before they decide if you should have steroids or continue Tysabri.

So the UCSF trip was great and the specialist and I had a big talk about Tysabri and agreed it is the best treatment for me short term until the MS oral treatment comes out. We talked about the Touch program you have to be involved in with Tysabri and that I would have to come back at 3mo, and then every 6 mo. I thought "great, our friends have a nice house 1 mi from the hospital this will be wonderful" plus I would be able to be seen by the specialists again.

I feel so guilty that I am not able to keep in touch like I used to with all my friends here. I barely keep in touch with anyone right now, so it's not just you guys, lol. My regular email inbox is always full of people I owe letters to. I always feel guilty, cause I feel like no matter what I do, I am letting someone down for some reason....do any of you feel like that sometimes, too?

I know it's been awhile since I've been on here, but wanted to tell all the great people who gave me their support THANK YOU from the bottom of my heart. I could say thanks and all the nice things in the world but it wouldn't do the way I feel for you all justice. Life has turned around for the most part for me. Other than missing my kids everything else has changed drastically in life.

This is a head's up to a couple of programs that may be of interest to you. First, Charlie Rose has been running a series on the brain, and over the weekend on PBS they've been running the episode that covers MS. It's airing again tomorrow, at least in my area where we get PBS from Spokane. Second, Jack Osbourne is scheduled to be on GMA tomorrow morning, I assume to speak about his recent diagnosis.

I am due for my tysabri on tues and if I have to call the dr tomorrow she will postpone my treatment and want to see me first. UGH!!!! Ok I'm done venting.

I just want everyone to know that for every good story about tysabri there is also some bad ones. And for those of you that don't know: there has been two more cases of PML ( a potentially lethal brain virus) from tysabri. I knew that risk when I took the drug, but after having such a bad reaction the word "risk" takes on a very REAL meaning. The risks are REAL. Be careful. Be educated. Be proactive about your own health because no one is going to look out for YOU as much as YOU.

Tysabri touch programs

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