Monday, May 20, 2013

Angelina's Gift

What a week it has been in the world of breast cancer. Hollywood star and activist, Angelina Jolie, announced she had taken action and undergone a preventative/prophylactic double mastectomy because she had tested positive for the BRCA1 gene mutation. There is so much to consider in that one announcement.

First, thank you, Angelina. Thank you, for bringing the hereditary side of breast cancer to the forefront. While much of the media attention may be focusing on Angelina's decision to be proactive, I feel that there has not been enough attention given to the fact that her condition is 1 in 10, the 10%. In fact, many medical experts have focused on the fact that Angelina's condition is "rare." Seriously, are you trying to make us feel better? Let's talk about rare. Each year in the US, 300,000 women are diagnosed breast cancer and 22,000 will be diagnosed with ovarian cancer (and more than 14,000 will die of ovarian cancer because by the time a woman feels symptoms, it is usually to late to treat her cancer). So I am thinking 10%, one in 10, of these women diagnosed each year would probably like the chance to know well ahead of time that they have the potential, the GENE mutation, for breast and ovarian cancer. Then they may have the chance to head off cancer at the pass. Just a hunch.

So here is the gift that Angelina gave us. She raised awareness. Yes, she raised awareness of breast cancer, hereditary breast cancer, BRCA, etc. But I am talking about something bigger...she raised awareness that one company, Myriad Genetics, owns the patent to the BRCA1 and BRCA2 genes. Myriad's BRACAnalysis is the only test available to women to determine their risk of hereditary breast or ovarian cancer. The test looks for defects in the BRCA1 or BRCA2 genes. Testing for the two genes costs approximately $3,340. Definitely not a price point for the common (wo)man. The good news is that there is a case underway in the Supreme Court to determine if companies can patent the process of taking a gene out of the human body for research. Arguments started in April and a decision is expected later this year. My opinion, and this is Amy's opinion and no one else's, is that this patenting of human genes has not only created a monopolistic situation but is stunting the growth and innovation in this area of testing. Who's to say that another company with access to this testing method could not improve it - make it better, faster, cheaper? Additionally, competition would bring the price down making this testing available to more women which would in turn save more lives. Not to mention the money saved in treatment that will have to occur down the road for these women that could have been tested and taken preventative action.

All because Angelina took action and was not afraid to share...
Until next time,
Amy


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