I am always interested in information on MS treatments but your efforts regarding Tysabri go beyond the call of duty. The treatment has been pulled which is a blow (even given the risks) to many MS sufferers who were hoping for something more effective than the current treatments. Given that 50% of RR ms sufferers go to Secondary within ten years, the suggestion that it will not be available for another ten years is sad news indeed.
I can understand everyone's frustration about Tysabri and how the whole situation has turned into a total mess. I continue to wonder what would have happened had Biogen waited for their two year data and known in advance about the PML, BEFORE going to the FDA for approval. Perhaps the drug could have been used in a restrictive manner under proper guidelines but Biogen has now lost that opportunity for what appears to be a very long time.
As far as notifying people ....are you suggesting that I and others keep this new information, albeit unverified, a secret? Was it OK for Biogen to almost every other week make press releases about how good Tysabri was going to be for MS patients, outline their marketing plan on how much money they were going to make at the expense of the other CRAB drugs and then in the end, pull the drug because of the possibility that users might die using it??!!!
Please realize that this information is neither created nor initially distributed by me but by others who are much closer to the Tysabri scenario that I will ever be.
And when I watch my wife suffer every day with this dreaded disease, I am not immune to the pain that most MS patients have to deal with every day. Believe me, it doesn't make me happy to see a drug like Tysabri get yanked and leave hundreds of thousands of MS patients hanging out to dry! And when Biogen sped up their approval process with the FDA, my biggest fear was what exactly happened to this drug.