There will be a public meeting in June of the FDA and the Agency for Healthcare and Quality (AHRQ).

The MS community will be represented with regard to the TOUCH protocol and Tysabri.

If you are interested in answering some questions regarding your experience (either positive or negative) with the enrollment process for receiving Tysabri via the TOUCH protocol, please contact me via Private Message for more information.

Thank you in advance for your assistance. You will help others who will be enrolling in the TOUCH program in the future. I will need your responses by June 15th.

Your responses will be kept confidential.

Hi Cheryl,

Thanks for coordinating this. I have the form, but I want to wait until after my first infusion on June 4th to fill it out. I just want to make sure I actually get the medicine and all is well before giving them praises they might not deserve...

That's fine Wiz. As long as I get it before June 15th. And if there is anyone else you think might be interested in helping, I need a lot of input.

I have a 15 minute presentation before the FDA on this and really need some help!! Patient input is extremely useful. This is all about the RiskMAP procedures.

Thanks!

I sent in my responses today, Cheryl.
I'm seriously considering a day trip to listen in on this meeting. You did say it was public? I think I have a planefare from a cancelled trip last fall.

I live in the Upper Peninsula of Michigan and I very much want to go on Tysabri. My Neuro will not administer Tysabri because of the necessary protocols and the expense of implementing training for her staff. The liability issues are also contributing to her Neuro Group's decision to not prescribe Tysabri.

She referred me to another Neuro to have this medication. I had an appointment with the University of Michigan's MS clinic for April 20th, but an emergency family problem arose and I was forced to cancel it. Now, I am on the waiting list with an appointment set up for Jan 2008! I don't think I can wait that long. I have been on Avonex, Betaseron, and Copaxone already. Currently, I am on Rebif. None of the meds have slowed down my MS exacerbations.

Two years ago, before Tysabri was pulled from the market, I had one infusion of Tysabri. It was wonderful. I had a remarkable response to it and for once I felt like I was making some good progress against MS. I was able to finally get out of bed in the morning without my usual stiffness and wobbling. Then, Tysabri was pulled. I've been waiting patiently ever since to have it available for us again.

Does anyone know of a Neuro in the Upper/ Northern Michigan or Northern Wisconsin area who is following the Touch protocol for Tysabri?

Thanks,
Bek

Hi Bek, welcome!

There is one up there, I'm not sure where or who, but I know someone from another board who's getting it somewhere in the Iron zone.

I'll try to catch up with her and ask. Stand by.

Cool beans!

Have you called MSActiveSource for information? They should be giving you information about TOUCH protocol certified doctors in your area.