Author Archives: bbzinger

What I Learned as A Volunteer

On Sunday, December 9, 2012, I was awarded the Lola Hanzel Courageous Advocacy Award by the American Civil Liberties Union of Northern California (ACLU-NC) at their annual Bill of Rights Day Celebration. Below is my acceptance speech for the award. … Continue reading

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One More Time With Feeling: Can We Be Done With Mammography Screening?

October was long over when the New York Times ran an op-ed about mammography screening and over-diagnosis. The op-ed makes a compelling case for ending population-based mammography screening for breast cancer, based on the on the numbers of women who … Continue reading

Posted in Breast Cancer, Health Policy | Tagged , , , | 6 Comments

Sitting Down to Call Out Stand Up To Cancer (SU2C)

I’m a baseball fan. And a San Francisco Giants fan. I watched a lot of baseball in the post-season. (If you’re wondering, Giants won the World Series, sweeping the Detroit Tigers in 4 straight games. But that’s not really the … Continue reading

Posted in Breast Cancer, Medical Science | Tagged , , , , , | 10 Comments

NBCC — The Promise, the Process and the Problems

I have a reputation as an expert on the breast cancer and breast cancer advocacy organizations, gained during my 15 years as the (now former) Executive Director of Breast Cancer Action. Since it’s once again October — Breast Cancer Industry … Continue reading

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Who Shall Live and Who Shall Die? — A Yom Kippur Reflection

  Introduction This past week marked the end of what we Jews call the Days of Awe, the 10 days between Rosh Hashanah, the Jewish New Year, and Yom Kippur, the Day of Atonement, which is the holiest day in … Continue reading

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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

Fool Me Once, Shame on You. Fool Me Twice . . . : Nothing New at Komen

If you like this blog, pass it on to your friends. Let’s keep the conversation going. Maybe you were wondering what I would have to say about the Chick-fil-A. It’s a good story, but not the subject of this blog. … Continue reading

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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