Category Archives: ALS Treatment

Telling the FDA What I Think About ALS Drug Trials

As readers of this  blog know, I have taken issue with a number of things related to how ALS drug trials are run. Some people at the Food and Drug Administration (FDA) read my blog and the comments to them. … Continue reading

Posted in ALS, ALS Treatment, Health Policy | Tagged , , | 1 Comment

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

Previews in Health Redux

If you like this blog, pass it on to your friends. Let’s keep the conversation going. Regular readers of this blog will have read my post a while ago called “Whatever Happened to Preview of Coming Attractions in Health.”  I … Continue reading

Posted in ALS, ALS Treatment, Illness | Tagged , , , , , | 3 Comments

New ALS Treatment? — Hold Your Applause, Please

If you like this blog, send it to 3 friends. Let’s keep the conversation going. ALS is in the news again. This time there’s a lot of hoopla about a trial involving stem cells. Before we all get too excited, … Continue reading

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

Health Activism: Not for the Faint of Heart

I have been a health activist since 1994. Having spent a long time in the cancer field, it seems that now I am destined to become an ALS activist. I just can’t seem to help myself. Wearing One Hat I … Continue reading

Posted in ALS Treatment, Breast Cancer, Health Policy | Tagged , , | 16 Comments

Science by Press Release – Not Good News for Patients

If you like this blog, send it to 3 (or more) of your friends and encourage them to sign up. Let’s keep the conversation going! It May Look Like News If you have ALS, or know someone who does, you … Continue reading

Posted in ALS Treatment, Medical Science | Tagged , , , | 9 Comments