Going public with private news
05-20-2013
by Kelsey Kaustinen  |  Email the author
SHARING OPTIONS:

By this point, there are few people—at least among those with access to the internet—who haven't heard about Angelina Jolie's announcement of having had a double mastectomy following the discovery that she bore a mutated form of the BRCA1 gene, which she noted gave her "an 87 percent risk of breast cancer and a 50 percent risk of ovarian cancer," according to her doctor.  
 
But Jolie is hardly the only woman to have undergone a preventive mastectomy; the procedure has increased in frequency in recent years, and fortunately, more and more insurance companies are including mastectomies and reconstructive surgery under their coverage plans. Jolie isn't even the only celebrity to have undergone the procedure in the past five years; Christina Applegate had a mastectomy performed in 2008, as did Sharon Osbourne in 2012. Both carried a BRCA mutation as well. So why has Jolie's news garnered such interest?  
 
The answer is likely twofold. First of all, as a famously attractive individual with a strong career in film, Jolie's life (and figure), like any actress', is an issue of public interest and discussion. And secondly, Jolie purposely made her choice public. She shared her story in an op-ed in the New York Times, noting that she did so "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 went on to add that she hopes her announcement will help to "encourage every woman, especially if you have a family history of breast or ovarian cancer, to seek out the information and medical experts who can help you through this aspect of your life, and to make your own informed choices."  
 
Jolie has shared what would normally be a very private matter—particularly for someone whose body, crass as it might sound, is tied to her work as an actress, and vice versa—and has established that "I do not feel any less of a woman. I feel empowered that I made a strong choice that in no way diminishes my femininity." Her decision, she noted, was not easy, but having lost her own mother to ovarian cancer, Jolie obviously did not want her own children to go through the same thing. As a result of her decision, Jolie said that "I can tell my children that they don't need to fear they will lose me to breast cancer."
 
For those unfamiliar with the genes in question, everyone carries the BRCA1 and BRCA2 genes, which the National Cancer Institute (NCI) identifies as tumor suppressors. In the absence of the mutation that leads to breast and ovarian cancer, these genes help to keep the DNA stable and prevent the unrestrained cell growth typical of cancer. The NCI notes that "Overall, it has been estimated that inherited BRCA1 and BRCA2 mutations account for 5 to 10 percent of breast cancers and 10 to 15 percent of ovarian cancers among white women in the United States."  
 
Those at greater risk of having a harmful BRCA1 or BRCA2 mutation who might consider getting tested include women of Ashkenazi Jewish decent, and those who have first- and second-degree relatives—such as a mother, sister, grandmother or aunt—who have been diagnosed with breast cancer or ovarian cancer. In addition, if a woman has been diagnosed with breast cancer at the age of 50 or younger, that also can be a sign of cancer inspired by a BRCA mutation. The NCI notes that family history patterns such as these "apply to about 2 percent of adult women within the general population."  
 
Men stand to benefit from the test as well, since they also have an increased risk of breast cancer if they have harmful BRCA1 mutations, as well as increased risk of pancreatic, testicular and early-onset prostate cancer, the NCI cautions, though all but testicular cancer are more commonly linked with mutations in the BRCA2 gene.
 
At issue with such testing for those who aren't millionaires, however, is the hefty price tag attached to the BRCA1 and BRCA2 test from Myriad Genetics: anywhere from several hundred dollars to over $3,000, depending on the individual. And not all insurance companies cover the test, either; the likelihood of an insurance provider covering genetic testing is dependent upon the patient's family cancer history.  
 
While no one can argue that Myriad's test provides valuable information about cancer risk—and consequently the ability to take action before the risk materializes, as Jolie did—it has to be noted that at-risk patients don't have any other options to ascertain their chances of getting BRCA-driven cancer (or even a second opinion on Myriad's results), thanks to that same test.
 
Myriad's patent on the BRCA genes for use in testing has been the topic of a long-running court battle, with multiple organizations going to court to debate Myriad's right to patent a gene and thereby block any other company or organization from developing an alternative (and possibly cheaper) test. The court battle has most recently reached the Supreme Court.

Jolie made a point of noting that "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 … remains an obstacle for many women." If more at-risk women decide to get tested and pick up this argument, it will be interesting to see what, if any, effect such social pressure might have on Myriad (and insurance providers) with regards to the cost and availability of the test.  
 
Whatever else her announcement results in, Jolie has used a rather frightening and personal event as an opportunity to increase awareness of an important and addressable genetic issue and the options available, and might have provided encouragement and impetus for other women who might be at risk.
 
"I am writing about it now because I hope that other women can benefit from my experience," Jolie said. "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 … I wanted to write this to tell other women that the decision to have a mastectomy was not easy. But it is one I am very happy that I made. My chances of developing breast cancer have dropped from 87 percent to under 5 percent. I can tell my children that they don't need to fear they will lose me to breast cancer.  
 
… Life comes with many challenges. The ones that should not scare us are the ones we can take on and take control of."

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