Tag Archives: informed consent

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

My Life as A Guinea Pig, aka ALS Patient

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! Drug Trial Travails I’m a participant in a clinical trial for an ALS drug. The … Continue reading

Posted in ALS Treatment, Medical Science | Tagged , , , , , , | 12 Comments