Wednesday, January 15, 2014

For Lisa

Bloggers are weighing in on the controversy surrounding the articles written about Stage 4 metastatic breast cancer patient Lisa Bonchek Adams by the husband and wife team Emma and Bill Keller (writing for the Guardian and The New York Times, respectively). As a follower of Lisa on twitter @AdamsLisa, I thought as "the responder" I should also respond.

Perhaps the Keller's unfortunate journalism will pave the wave for change on how cancer is depicted in future articles by all journalists.  Perhaps journalists will now take the time to really research metastatic breast cancer before writing anything on it.  So, in that sense…it has been a good wake up call. When Angelina Jolie came forward with her op ed piece last year,  I found most journalists were completely uneducated about BRCA gene mutations and the feelings/decisions accompanying cancer risk. As a BRCA Health advocate and BRCA1 gene mutation carrier I work hard daily by tweeting, posting, pinning on pinterest about BRCA; what it means and how it feels to have a gene mutation.  Lisa, on her platform, is educating daily by showing what Stage 4 metastatic cancer looks like and feels like. It is important for all of us who have voices to use them so that judgement and insensitivity can wither away and education can happen.  This is why the two articles mystify me even more. For the Kellers, it seems judgement and insensitivity trumped education. They both missed a wonderful opportunity.

It is an obligation of journalists/reporters to get the story right--do the research, interview the experts, be accurate. I would say this would be even more important when writing about a patient with cancer- which is highly patient specific. When writing about someone with cancer...it also seems an ethical must for journalists to take a step back and ask themselves, is doing this or saying this in any way insensitive to the person I am writing about?  It is clear that the Kellers did none of the above. The articles say way more about the Kellers than Lisa Adams. 

Amy Byer Shainman
BRCA Health Advocate
BRCA1 positive, PREVIVOR
The BRCA Responder

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