Going public with private news

Angelina Jolie made waves when she revealed that she'd undergone a preventive double mastectomy after genetic testing revealed she had a mutated BRCA1 gene that gave her a high risk of breast and ovarian cancer. Jolie, who lost her mother to cancer, said she shared her story so other women would be aware of their options.

Kelsey Kaustinen
By this point, there are few people—at least among thosewith access to the internet—who haven't heard about Angelina Jolie'sannouncement of having had a double mastectomy following the discovery that shebore a mutated form of the BRCA1 gene, which she noted gave her "an 87 percentrisk of breast cancer and a 50 percent risk of ovarian cancer," according toher doctor. 
 
But Jolie is hardly the only woman to have undergone apreventive mastectomy; the procedure has increased in frequency in recent years,and fortunately, more and more insurance companies are including mastectomiesand reconstructive surgery under their coverage plans. Jolie isn't even theonly celebrity to have undergone the procedure in the past five years;Christina Applegate had a mastectomy performed in 2008, as did Sharon Osbournein 2012. Both carried a BRCA mutation as well. So why has Jolie's news garneredsuch interest?
 
 
The answer is likely twofold. First of all, as a famouslyattractive 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 theNew York Times, noting that she did so"because there are many women who do not know that they might be living underthe shadow of cancer. It is my hope that they, too, will be able to get genetested, and that if they have a high risk they, too, will know that they havestrong options." Jolie went on to add that she hopes her announcement will helpto "encourage every woman, especially if you have a family history of breast orovarian cancer, to seek out the information and medical experts who can helpyou through this aspect of your life, and to make your own informed choices."
 
 
Jolie has shared what would normally be a very privatematter—particularly for someone whose body, crass as it might sound, is tied toher work as an actress, and vice versa—and has established that "I do not feelany less of a woman. I feel empowered that I made a strong choice that in noway diminishes my femininity." Her decision, she noted, was not easy, buthaving lost her own mother to ovarian cancer, Jolie obviously did not want herown children to go through the same thing. As a result of her decision, Joliesaid that "I can tell my children that they don't need to fear they will loseme to breast cancer."
 
For those unfamiliar with the genes in question, everyonecarries the BRCA1 and BRCA2 genes, which the National Cancer Institute (NCI)identifies as tumor suppressors. In the absence of the mutation that leads tobreast and ovarian cancer, these genes help to keep the DNA stable and preventthe unrestrained cell growth typical of cancer. The NCI notes that "Overall, ithas been estimated that inherited BRCA1 and BRCA2 mutations account for 5 to 10percent of breast cancers and 10 to 15 percent of ovarian cancers among whitewomen in the United States."
 
 
Those at greater risk of having a harmful BRCA1 or BRCA2mutation who might consider getting tested include women of Ashkenazi Jewishdecent, and those who have first- and second-degree relatives—such as a mother,sister, grandmother or aunt—who have been diagnosed with breast cancer orovarian cancer. In addition, if a woman has been diagnosed with breast cancerat the age of 50 or younger, that also can be a sign of cancer inspired by aBRCA mutation. The NCI notes that family history patterns such as these "applyto about 2 percent of adult women within the general population."
 
 
Men stand to benefit from the test as well, since they alsohave an increased risk of breast cancer if they have harmful BRCA1 mutations,as well as increased risk of pancreatic, testicular and early-onset prostatecancer, the NCI cautions, though all but testicular cancer are more commonlylinked with mutations in the BRCA2 gene.
 
At issue with such testing for those who aren'tmillionaires, however, is the hefty price tag attached to the BRCA1 and BRCA2test from Myriad Genetics: anywhere from several hundred dollars to over$3,000, depending on the individual. And not all insurance companies cover thetest, either; the likelihood of an insurance provider covering genetic testingis dependent upon the patient's family cancer history.
 
 
While no one can argue that Myriad's test provides valuableinformation about cancer risk—and consequently the ability to take actionbefore the risk materializes, as Jolie did—it has to be noted that at-riskpatients don't have any other options to ascertain their chances of getting BRCA-drivencancer (or even a second opinion on Myriad's results), thanks to that sametest.
 
Myriad's patent on the BRCA genes for use in testing hasbeen the topic of a long-running court battle, with multiple organizationsgoing to court to debate Myriad's right to patent a gene and thereby block anyother company or organization from developing an alternative (and possiblycheaper) test.The court battle has most recently reached the Supreme Court.

Jolie made a point of noting that "It has got to be apriority to ensure that more women can access gene testing and lifesavingpreventive 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 willbe interesting to see what, if any, effect such social pressure might have onMyriad (and insurance providers) with regards to the cost and availability ofthe test.
 
 
Whatever else her announcement results in, Jolie has used arather frightening and personal event as an opportunity to increase awareness of animportant and addressable genetic issue and the options available, and mighthave provided encouragement and impetus for other women who might be at risk.
 
"I am writing about it now because I hope that other womencan benefit from my experience," Jolie said. "Cancer is still a word thatstrikes fear into people's hearts, producing a deep sense of powerlessness. Buttoday it is possible to find out through a blood test whether you are highlysusceptible to breast and ovarian cancer, and then take action … I wanted towrite this to tell other women that the decision to have a mastectomy was noteasy. But it is one I am very happy that I made. My chances of developingbreast cancer have dropped from 87 percent to under 5 percent. I can tell mychildren that they don't need to fear they will lose me to breast cancer.
 
 
… Life comes with many challenges. The ones that should notscare us are the ones we can take on and take control of."

Kelsey Kaustinen

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