I seem to keep coming back to this, or maybe it keeps coming back to me?
In May 2013, when Angelina Jolie published “My Medical Choice” in the New York Times in which she revealed that she had had a preventative double mastectomy due to her BRCA+ status, the world was shocked. Tons of previvors, among others, responded to Jolie’s article with support, thrilled that a celebrity name would finally bring some real awareness to genetic testing, BRCA, and previvor issues. I was a little less thrilled; you can read here if you like, but the gist is that I felt that Jolie had missed a chance to let potential BRCA+ patients know about the resources that are available to them. She didn’t mention genetic counseling, she didn’t mention FORCE – the only organization that exists to support people with HBOC or BRCA mutations. Later, I admitted that my response was emotional and reactionary.
But it turns out I might have been sort of right about Jolie’s missed opportunity. Yesterday in BRCA Commons (a Facebook Group for previvors), there was a lot of conversation about this article posted by one of the group members (I won’t reveal details of the conversation since the group is private). The link goes only to the abstract of the article, but the abstract identifies the main points – by the day after Jolie’s announcement in the NYT, the National Cancer Institute’s fact sheet on Preventative Mastectomy received 69,225 hits – a 795-fold increase over the previous day (the article concludes that this proves there is direct correlation between celebrity disclosure and online information seeking behavior – do I even need to comment on what a ridiculous use of research dollars that was?). Jolie used the phrase “preventative double mastectomy” in her NYT piece, and the NYT provided a link from her article to the NCI fact sheet. Thus, it makes sense that so many people clicked on the fact sheet – the NYT directed them there.
Also linked from Jolie’s article: when she writes of her 65 percent risk of ovarian cancer, the words “65 percent” are linked to the Standford Genetics Program, as well as a direct link to the Pink Lotus Breast Center where Jolie had her surgery. I can only assume that Stanford paid to be have their program linked from the article since I see no reason why this specific genetics program (among who-knows-how-many-others) would have received this “luck.” But I digress.
The missed opportunity comes then, I suppose, not from Jolie herself, but from the NYT. At any point in her article when she mentions her risks or her surgery, the NYT could have linked to a variety of pages from FORCE that offer information by HBOC and BRCA specialists – not just cancer specialists like the NCI, but those specifically in the know about BRCA. Then, 69,225 people would probably have a much better and more nuanced understanding of the importance of genetic testing and the relevance of BRCA to their particular lives; for all we know, most of those people went to that NCI Fact Sheet and found it such a turn-off (because it is not welcoming in any way, like FORCE is, and is instead so black and white and full of medical terminology) that they did not seek any further information about BRCA.
Like I said above, the abstract of the article about the correlation concludes, “Celebrity disclosures can dramatically influence online information-seeking behaviors.” And while I think that is so ridiculously obvious that I can’t believe it was even funded, I’m quite interested in the second part of their conclusion, “Efforts to capitalize on these disclosures to ensure easy access to accurate information are warranted.” Yes – capitalize. Stanford Genetics seems to have; Pink Lotus might have. But certainly, I wish our previvor community had been able to – and I don’t mean financially. I wish we had had the opportunity to say, hey NYT – we are here. Link to our blogs, link to our discussion boards, link to our mothership – FORCE – because we want to help those 69,225 people. And even though no one wants to be a part of this, we want to welcome them to our community.