What Angelina Jolie Didn't Tell You About Breast Cancer and That Gene
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Last month, I lost my too-young-to-die sister to a BRCA#1 breast cancer. When I was a toddler not yet in kindergarten, breast cancer robbed me of my mother. I am a BRCA#1 gene carrier, and recently wrote about it in my memoir, Raising Expectations and Raising Hell. Neither my sister nor my mother’s premature deaths, nor my own writing could possibly have turned BRCA#1 (and #2) into a household conversation the way a beautiful movie star could. Like millions of women, I have been reading the praise, the misogynist “jokes,” and the criticism being lobbed at Angelina Jolie.
The most urgent fact she left out of her op-ed, and that has received scant attention in the days since, is absolutely crucial: 70% of the BRCA#1 gene mutation breast cancers result in the most aggressive, least treatable form of breast cancer called the “triple negative,” a variation that more resembles ovarian than breast cancer genetically and which does not respond to any of the three main forms of treatment common among other breast cancers. The population next most likely to get triple negative breast cancer, after BRCA carriers, are African-American women.
According to Peggy Orenstein’s recent NYT Magazine cover story on the limits of the pink-fuzzy-teddy-bear breast cancer awareness movement, “Mammograms, it turns out, are not so great at detecting the most lethal forms of disease — like triple negative — at a treatable phase. Aggressive tumors progress too quickly, often cropping up between mammograms. Even catching them 'early,' while they are still small, can be too late: they have already metastasized.”
It’s safe to say that I am alive today, because after my sister was diagnosed with breast cancer, she had the gene test done. The fact that she’s now dead and I am alive leads to a very particular kind of grieving, one that mixes guilt into an already heavy stew of sadness and sorrow. Had she gotten the same directives I did, would she still be alive? I am sharing my story and celebrating Jolie’s brave if incomplete op-ed because my sister got different directives. As many have pointed out, Jolie, with more money than a small nation at her disposal, had access to the finest healthcare. I also had access to the finest healthcare, and mine came from my union.
Yes, that’s right: you get world-class healthcare in America if you are a movie star or if you belong to a union. Unfortunately, the odds in the US that a woman can overcome the anti-union, anti-collective bargaining crusade and actually succeed at forming a union in order to get good healthcare are about the same as the odds of becoming a top movie star. Restoring the right to collective bargaining would go a long way toward many more women getting access to the care I got.
Because it was 2009 and pre-Obamacare, I was forced to pay for the gene test out-of-pocket, because if I attempted to use insurance and the test was positive, the insurance company could legally have dropped my coverage. And even though it’s criminal that Myriad has patented my gene (I’d happily give a dose of it to any open-source company that wants it and dare Myriad to put me in jail), another fact omitted from the recent news is that once a single person in the family has the test at the too-expensive price, if she’s positive, the cost of the gene test for other family member drops to about $200. When they called me in to tell me I had the BRCA#1 gene, I didn’t quite understand I had entered what Barbara Ehrenreich so brilliantly described in Harpers in 2001 and in her book Bright-Sided as “Cancerland.”