Tag Archives: Biogen Idec

Not So Funny Things Happened on the Way to a Diaphragm Pacer: When “Informed” is Not “Consent” and Related Adventures of an ALS Activist

Regular readers of this blog have read a lot about my adventures trying to get Biogen Idec, the makers of dexipramipexole (dex), to let me get a diaphragm pacer without being dropped out of the dex trial in which I’ve … Continue reading

Posted in ALS, ALS Treatment, Health Policy | Tagged , , , , , , , , | 18 Comments

FDA to ALS Patients: Fuck You

If you like this blog, please pass it on to your friends. Let’s keep the conversation going. I will spare my readers the long saga of my fight with Biogen Idec about the dex trial and my plans to get … Continue reading

Posted in ALS, ALS Treatment, Health Policy | Tagged , , , , | 28 Comments

Broadening ALS Research to Help Patients III: Make Biogen Idec Walk Its Talk

Like many readers of this blog, I have been exchanging emails with Dr. George Scangos, CEO of Biogen Idec, the company running the clinical trial in which I am a participant. The trial is testing the efficacy of a drug … Continue reading

Posted in ALS, ALS Treatment, Health Policy, Medical Science | Tagged , , , , , | 4 Comments

Broadening ALS Research to Help Patients — II

Late last week I posted here a message I sent I had sent to the CEO of Biogen Idec, the company running the dex drug trial I’m in. I encouraged people to write to the CEO, Dr. George Scangos, about … Continue reading

Posted in ALS, ALS Treatment, Health Policy | Tagged , , | 4 Comments

Let’s Broaden ALS Research to Help Patients

If you like this blog, pass it on to your friends. Let’s keep the conversation going. ALS clinical trials are usually quite narrow. They test one device or drug only, and exclude people who are already participating in another trial. … Continue reading

Posted in ALS, ALS Treatment, Health Policy | Tagged , , , , , , | 4 Comments