When I woke up this morning, the internet was ablaze with kudos to Angelina Jolie for her NYT op ed piece about her decision to have prophylactic bilateral mastectomy. The cheers were loud and immediate. And they made me really, really uncomfortable.
Before I get too far, I will say this unequivocally: I admire Jolie’s courage. I admire her willingness to speak out about it in our breast-obsessed culture. I believe that celebrity can be a good platform from which to raise awareness about potentially life-saving tests and procedures. I have no gripe with Angelina Jolie’s decision. It was hers to make and it is her body, so good for her.
But BRCA testing and preventative treatment is way, way more complicated than that.
Despite the fact that only 5-10 percent of breast cancers are a result of a BRCA mutation, the rush to subject women to the astronomically expensive tests and the resultant anxiety surrounding them is rampant.
A recently diagnosed friend of mine was told, at her very first surgical consult, that she might want to consider having the test done and if it were positive, they could just go ahead and get that double mastectomy done right now, as if it were a BOGO shoe sale at Payless. This despite the fact that she has zero family history of the disease and no guarantee her insurance would cover the 3000+ dollar test or any preventative treatment it might indicate. Also: she already had cancer. Biopsy would tell them how to treat it. There is plenty of debate about whether radical surgeries improve survivability. Was that the time to be talking about the BRCA test? I don’t know.
And what about her daughters? If her test were positive, would she want to have them tested? Or treated? What about her two sisters? Where do the ripples stop? It makes one’s head spin.
But the real problem is not only the almost impossibly difficult questions raised by doctors having these discussions (often prematurely) with their patients. It’s that awareness (how I have come to loathe that term as it relates to disease) does not equate to access.
Angelina Jolie, for all intents and purposes, has an unlimited ability to pay for her own healthcare: for testing, for the mastectomy itself, for reconstruction of highest quality (including an additional procedure to help preserve her nipples). She said in her column that she feels “empowered” by having made this decision. I’ll bet.
Jolie says she went public about her own ordeal because she hopes that “other women can benefit from [her] experience. Cancer is still a word that strikes fear into people’s hearts, producing a deep sense of powerlessness. But today it is possible to find out through a blood test whether you are highly susceptible to breast and ovarian cancer, and then take action.”
Well, yes. If you’re Angelina Jolie. If you are uninsured, self-employed, single, live in a rural area, have no support system, etc., etc., then none of these are really remote possibilities.
Jolie made a difficult and courageous decision. But one can only make a decision when there are viable options from which to choose.
The most many women can do is cross their fingers and hope for the best. The absence of any acknowledgement of this fact is only one of the things that makes Jolie's piece discomfiting. That thousands of women might seek unnecessary testing they really can't afford is another.
Awareness, in this case, is a double-edged sword.
