[ewizabeth]

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.

[Riverwild]

Good Job Wiz!!

If enough of us stand up and take them on, we'll get some answers! Make some noise!

[Stacer]

Originally Posted by ewizabeth

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.

I just called to complain and was read a boxed answer over the phone. She said she will take note of my complaint. Not good enough.

[Natalie8]

I just called too. They feigned cluelessness. See my report on the Tysabri sticky.

[gonnamakeit]

Biogen bought out a company that was working on a cure for PML over a year ago. Soon they may be able to fix your PML and pocket those profits too.

It would seem if a large number of patients refused their next infusion that would grab Biogen's attention more than calling their toll free number.

Even calling the infusion center and letting them know that you will not do any more infusions until you are able to obtain some info on PML will get word back to Biogen via the people in charge of the infusions.

gmi

[ewizabeth]

I went to the Biogen Idec website and clicked on management names. Then I found the contact us phone number and called asking for a name from the management list. I chose Susan Alexander (but she's out on vacation) so somebody from legal counsel is going to be calling me back.

Don't let them redirect you to patient support at Tysabri if you call them, get someone from corporate to talk to directly. I also left a voicemail for someone at the FDA to call me back.

[SallyC]

Go get em Wizzer!!!

[Natalie8]

Go Wiz!!!!

[ewizabeth]

Paul Clancy is the chief financial officer at Biogen Idec. He might be a good one to ask for, and make sure you let him know that you know hundreds, if not thousands of patients that take Tysabri around the world.

The main contact number at Biogen Idec is 617-679-2000, when you call, tell the receptionist you want to talk to one of management.

Part of the company core values are listed as, Quality, Integrity and Honesty. They need to give us the information we need if they want to uphold those values.

[Natalie8]

Originally Posted by ewizabeth

Paul Clancy is the chief financial officer at Biogen Idec. He might be a good one to ask for, and make sure you let him know that you know hundreds, if not thousands of patients that take Tysabri around the world.

The main contact number at Biogen Idec is 617-679-2000, when you call, tell the receptionist you want to talk to one of management.

Part of the company core values are listed as, Quality, Integrity and Honesty. They need to give us the information we need if they want to uphold those values.

You might also ask for Carmen Bozic, MD, vice president and global head of drug safety and risk management. She is really the head of TOUCH and safety.