Tysabri and PML: Call and complain to Biogen.

I get my 32nd infusion on Friday. Biogen isn't reporting the details of PML cases anymore. I need to know what the risk is for people my age, with similar health profiles, having similar number of infusions, etc... I don't want the name and addresses of the patients, but I want the general data.

I've spoken to Biogen about this twice in less than a week.

Call them at 1-800-456-2255 for patient support. Tell them you want the information made available about the current number of PML patients. You want to know the country, the age, number of infusions, previous drug therapy, etc...

I told the last person I spoke to that I wanted to make sure the call was being recorded and that she would report my concerns to upper management.

I told her that I belong to a world wide support group and I know a lot of people taking Tysabri and that we're concerned.

I also said that I realize the reporting of PML cases isn't helping the company financially, but that since we are the ones that can be affected by PML, we need to know the information.

I told the person I spoke to that I'd be calling my doctor.

But they don't have the spare time or resources to be giving me Biogen's secret data details. So that's why I started this thread. I'm not going to make my doctor's office do Biogen's work. We need to make Biogen do their own reporting.

Thanks to RW for getting my dander up, lol.