Cheryl,
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One of the most common threads that we heard was the lack of positive information about Tysabri. The Medication Guide and associated educational tools are slanted towards risk. We recommended that these materials be more balanced.
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I think one of the main reasons that The Medication Guide and associated educational tools are slanted towards risk is the fact that some drug companies do a very poor job in pointing out these risks to prospective patients. After all, highlighting a risk as opposed to mentioning it in the fine print, doesn't help potential sales!
Leaving Tysabri for a moment, Teva, the makers of Copaxone, spend very little effort or time to mention the dangers of Lipoatrohpy to prospective Copaxone users. Yet this problem can occur in up to 45% of Copaxone users!
Teva has said only about 1% of the users may have this problem. Hmmm.
The Touch program has certainly put a lot of doctors and MS patients at greater ease when it comes to making a decision as whether to use Tysabri or not. While Biogen can be commended for establishing this program, I sometimes wonder if they would be running it if it wasn't connected to the FDA's re-approval of the drug. The cost must be significant and in almost every case, this cost is passed on to the patient and/or insurance company.
Keep up the good work with your efforts.....you are certainly to be congratulated.
Harry