Tag Archives: FDA

Adventures with a Feeding Tube Replacement: A Not So Funny Story, a Cautionary Tale, and A Call To Action

I have had a feeding tube since January 2012 because, thanks to ALS, I can not swallow food or liquids.  I have been nourishing myself since I got the tube. The tube is called a PEG tube. I have a … Continue reading

Posted in ALS, Disability | Tagged , , , | 9 Comments

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

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

Fast-Tracking Cancer Drugs: The Back Story and The Future

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! In a previous blog post, I tried to explain the importance of understanding what was … Continue reading

Posted in Breast Cancer, Health Policy, Medical Science | Tagged , , , , , , , , , , , , , , , | 4 Comments

People’s Lives as the Endpoints of Medical Research – Now There’s An Nifty Idea

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! A little history, from a breast cancer perspective During my time at Breast Cancer Action, … Continue reading

Posted in Medical Science | Tagged , , , , , , , , , , , , , , | 6 Comments

Medicare Efficiency? – Not Really

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! Anyone who has ever confronted a serious health issue knows that going on line for … Continue reading

Posted in Health Policy, Illness | Tagged , , , , | 15 Comments