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Recent Posts
- In memory of Blandina Khondowe
- Barbara Brenner Breast Cancer Activist Scholarship
- Remembering Barbara
- Funeral arrangements and after
- Barbara Brenner 1951-2013
- Thanks and Blessings
- The Legislature and Breast Cancer: Not a Good Match
- Telling the FDA What I Think About ALS Drug Trials
- Has NBCC Lost Its Way?
- Steve Gleason: A Rare Celebrity Doing Good by Talking About His Illness
- Approaching Gun Violence as a Public Health Problem: Who Gets to Have a Say?
- Adventures with a Feeding Tube Replacement: A Not So Funny Story, a Cautionary Tale, and A Call To Action
- What I Learned as A Volunteer
- One More Time With Feeling: Can We Be Done With Mammography Screening?
- Sitting Down to Call Out Stand Up To Cancer (SU2C)
- NBCC — The Promise, the Process and the Problems
- Who Shall Live and Who Shall Die? — A Yom Kippur Reflection
- Not So Funny Things Happened on the Way to a Diaphragm Pacer: When “Informed” is Not “Consent” and Related Adventures of an ALS Activist
- FDA to ALS Patients: Fuck You
- Fool Me Once, Shame on You. Fool Me Twice . . . : Nothing New at Komen
- Broadening ALS Research to Help Patients III: Make Biogen Idec Walk Its Talk
- Broadening ALS Research to Help Patients — II
- Let’s Broaden ALS Research to Help Patients
- The Supreme Court on Health Care II — The Medicaid Debacle
- Wonders Never Cease — The Supreme Court’s Health Care Decision
- Previews in Health Redux
- If you want to sign a letter calling on Nancy Brinker to resign
- Susan Love: Time to Think Before You Pink
- Tobacco Company Lies Don’t Mean You Should Vote for Prop. 29
- Odds and Ends in the Pink Ribbons Wars
- What Ever Happened to Previews of Coming Attractions in Health?
- Changing the Culture of Health Care in a Consumer Society — Not So Easy
- New ALS Treatment? — Hold Your Applause, Please
- Thoughts on Leadership – Listen Up, Nancy Brinker
- Choices: How I Live with ALS
- Don’t Be Surprised By the Undelivered Promise of Personalized Medicine
- Context is Everything — Framing the Film Pink Ribbons, Inc.
- Further Thoughts on Disability Access
- Komen’s True Colors: Red, not Pink
- Komen Politics: It’s Not Just About Abortion
- Gloves Off: What the Fuck, Komen?
- Pink Ribbons, Inc. is Coming to the US
- You Don’t Have to Talk Like Stephen Hawking
- Tikkun Olam and Corporate Responsibility
- IOM Report on Breast Cancer and The Environment: What Komen’s $1 million Bought
- Social Justice: The Health Connection
- Can We Watch Our Language, Please?
- Nothing Should Have to Be This Hard
- Is October Over Yet?
- Mi’She’Berach: Thoughts on Illness and Blessing
Ways to Look at Illness
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
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Tagged actiivism, Biogen Idec, CDER, CPMC, FDA, Forbes Norris, informed consent, IRB, SNIFF test
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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
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Tagged Biogen, Botox, Dexpramipexole, electromyography, EMG, informed consent, swallow test
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12 Comments