Angelina Jolie, BRCA, and Preventitive Efforts and the Discourse Around It

by - Tuesday, May 21, 2013

This week at the grocery store, I couldn't help but notice that Angelina Jolie was getting a TON of press attention for her op-ed in the New York Times about her double mastectomy. She has catalyzed a lot of debate- I have read things about class difference, sexuality and breasts, and (of course) the biopolitics of the BRCA gene itself.

 Jolie could have kept her surgery entirely private. She is certainly rich and powerful enough that it would have been easy enough to just keep it hidden. Instead, she wrote an op-ed for the New York Times. It couldn't have been a more public statement.

In the essay, she writes from a deeply personal perspective, beginning with a narrative about her sadness that her children will never get to experience the sweetness and love of her mother, who passed away at 56 from a long battle with cancer. Jolie says that though she would assure her children it would not happen to her, the truth is that she carries the BRCA1 gene, so her chances of getting breast cancer were up to 87% and ovarian cancer about 50% (I know my doctor gave me different odds, but the bottom line is that if you have the genetic predisposition, your chances are much higher.

Jolie then writes at length about her choice to get a double mastectomy (and suggesting she will eventually get the preventative surgery for her ovaries as well) and the steps that took place over a three month period.

In some ways, I can relate to Jolie's story. Much like Jolie's children, we always heard about our Moms' Mom, who passed away when they were teens after a long and painful battle with cancer. I don't think I ever felt fear necessarily that cancer was coming, but I always assumed that it probably was. It was only last year, when we watched my Aunt fight it off, that I realized what Cancer really means, and why our moms had treated it the way they did. Cancer sucks, and it is very hard to watch someone you love have to go through it.

When my Aunt Ann began her treatment for ovarian cancer last year, all the female members of our family had similar conversations with our doctors about BRCA. Women in our family get cancer. We are at least a couple generations deep into this truth. When my doctor heard about our family, she suggested I get BRCA testing, because to her it sounded like we have the BRCA2 genetic mutation. She started conversations about speeding up our spawning so we could get my death machine ovaries out sooner rather than later if I have it (this is still a mixed bag, and it can cause all sorts of problems on its own). I like Jolie's suggestion that women don't need to accept breast cancer as an inevitable fate, and I can see why she made the choice she did.

So it is clear to me why she got the double mastectomy, but why speak out about it in this way? And why has it received this onslaught of attention? Is it just because she is the ultimate celebrity? Is it connected to her status as a super sex symbol and the shock she would proudly part from a body part mistakenly used as a symbol for femininity and sex?

Jolie says more than once why she wrote the article. First, she says, rather broadly, that she hopes other women can benefit from her experience. She means to bring attention to BRCA testing, so women are more informed of their options. She wants to add some visibility and transparency to the whole process.

Next, she is careful to say that it does not change how the people she loves see her, and it does not change how she perceives her own body and femininity. Immediately after, she writes a whole paragraph about her partner's support, as if to subtextually say that you can do this and your super hot gentleman friend will still love you. Though I have yet to see this point belabored in the subsequent writing, I feel strongly that this is the part that has captured the press. Nearly every article mentions the "results can be beautiful" quote, so we all know it is still ok to want Jolie's nunjas.

Despite this, I have always admired that Jolie was never cool with just being a hot thing, and it is impressive that she can transform a longstanding fascination with her body into a platform to advocate for women's health. in other words, I am not knocking Jolie, but I do think we could all wonder why her doing this is so much more powerful than someone else. I keep thinking about Lara Croft for whatever reason. The article seemed to stress her own humanity- mourning her mom, a fear of death, worry about her children- and we have to wonder how that goes against the rhetoric she is often shrouded in.

Finally, she says she became public about this, because "there are many women who do not know that they might be living under the shadow of cancer. It is my hope that they, too, will be able to get gene tested, and that if they have a high risk they, too, will know that they have strong options." Jolie is advocating for broader use of preventative care. 

Before I read the article, I was pretty suspicious, because I knew from experience how expensive the test was (my doctor won't have me take it until my Mom does, because it travels mother to daughter). I thought this might be a GOOP situation, where an exorbitantly rich person assumes that certain options are available to everyone that are really only available if you are super rich. She expects this suspicion, but only addresses it half-heartedly. She says:

"Breast cancer alone kills some 458,000 people each year, according to the World Health Organization, mainly in low- and middle-income countries. It has got to be a priority to ensure that more women can access gene testing and lifesaving preventive treatment, whatever their means and background, wherever they live. The cost of testing for BRCA1 and BRCA2, at more than $3,000 in the United States, remains an obstacle for many women."

Here, Jolie acknowledges that cancer survival is still an issue of class, but when she calls for better access to care, she turns to passive voice. This is the danger of this article. The BRCA  mutation, and the test to detect it, is patented by Myriad Genetics. Because only one company controls the application of the test, the cost of doing so can be greatly inflated. In short, this is a way for some people to make a lot of money. So when Jolie begins to vaguely address the cost, it could be a much more direct reproach. I worry something like this could still be acting as a direct call for women to take the test, but just sort of a vague wish that it could be less expensive. The patent system in this case (and in many cases in the medical field) creates a good part of this problem.

At the same time, there are many medical procedures and choices that are also expensive but are treated as unavoidable and necessary. Jolie's argument that this could also be seen as legitimate in that way seems powerful all on its own. It's a radical move to do, and even more radical to talk about, but I think that is extraordinarily courageous and badass, so kudos to her. 

All in all, I am glad that Jolie spoke out, and you have to appreciate when a women's health issue becomes such a broad topic of conversation. It is brave to come out with her story in this way, and I do hope so women benefit from it.

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