Most everyone who’s met me (and plenty who know me only through my blogs or other media) have learned some basic things about me:
- I’m a breast cancer survivor.
- I developed breast cancer at age 36 because I have the BRCA 2 genetic mutation, which greatly increases the risk of both breast and ovarian cancer.
- Because of my mutation, I chose to get a prophylactic oophorectomy in addition to the double mastectomy that was part of my cancer treatment.
People know these very intimate facts about me because I tell them; because it’s vitally important to educate people about the dangerous BRCA mutations and encourage them to get tested if they have risk factors.
And when I say vitally important, I mean it. The genetic test that detects BRCA 1 and BRCA 2 has saved many, many lives. Women who discover that they have one of these mutations can fend off almost certain cancer with preventative surgeries.
As of this morning, we know that Angelina Jolie took that test. She discovered that she had the BRCA 1 mutation and recently opted for a preventative double mastectomy.
Then she told the world about it in the New York Times.
When I saw her op ed this morning, I immediately contacted Sue Friedman, founder and executive director of FORCE: Facing Our Risk of Cancer Empowered, the hereditary breast and ovarian cancer organization where I am a local outreach coordinator.
This is huge.
In one day, Angelina Jolie educated thousands and thousands of people who might never have heard of the BRCA mutation. There’s no doubt that she saved lives.
I can’t tell you how grateful I felt reading her article. Not only did the paparazzi-hounded celeb tell us private details about her mastectomy process, she also covered many other important points.
She let us know that her chances of developing breast cancer—once 87 percent—are now less than five percent.
She told spouses and partners how important they are to the mastectomy transition.
She told us she feels just as feminine as always.
And she let us know that she looks just the same to her children, but for a few small scars. More importantly, her kids’ fears about losing their mom to cancer are greatly diminished.
Finally, Jolie advocated to make the expensive BRCA test—it costs more than $3,000 in the U.S.—more accessible for all women.
FORCE has been fighting for this, too. The organization contributed to the ACLU’s lawsuit challenging Myriad, which holds the patent on the BRCA genes. The case was argued before the Supreme Court in April.
FORCE and the ACLU are powerful entities, but as anybody who’s ever been in a supermarket checkout line knows, there’s nothing like the influence of celebrity. Using celebrity to educate people about obscure but important medical information is one of the best kinds of public service that I can think of. I’m proud to say that Brogan’s own Jackie Schultz, whom you probably know as the current Miss Michigan USA is using her visibility in the same way. Jackie has been speaking out about Mayer-Rokitansky-Küster-Hauser syndrome, a congenital condition in which females are born without a uterus. Jackie has this condition, along with 75,000 other women in the United States. It wasn’t easy for her to reveal this information about herself. But, like Angelina Jolie, Jackie recognized that her position in the public eye presented an amazing opportunity.
There’s another word for what Jackie and Jolie have done with their personal revelations: Marketing.
Most people think marketing means selling stuff. And of course, we proudly do plenty of that at Brogan.
But marketing—especially the social marketing that is Brogan’s expertise—is also about informing. Advocating. Making a difference. And, in some cases, potentially saving lives.
There are so many reasons I’m grateful to do what I do. Having the ability to educate about the BRCA mutation and advocate for greater accessibility to genetic testing is definitely one of them.
Angelina Jolie’s celebrity gives her that ability, too—in spades. I’m thrilled that she’s used it for this cause and I have very high hopes that her decision to go public is going to affect genetic testing practices and save lives.
Well stated!
Well stated!
Great article, Ellyn. All day
Great article, Ellyn. All day I have been picturing Angelina and Betty Ford swapping stories abou the impact of sharing what many would choose to keep private. I hope the time is not too far away when prophylactic mastectomy will be completely unnecessary because the solutions will be so much easier. Meanwhile we must, as you do so well, keep telling our stories.
Great article Ellyn!
Great article Ellyn!