06/25/2013 09:25 am ET Updated Aug 25, 2013

Brave and Crazy: Preventive Mastectomy and Insurance

The discovery of the BRCA gene mutations and their correlations to familial breast cancer marked a giant step forward in understanding some occurrences of this disease. With this discovery came new tests and new options. The news outlets began covering stories about women who were tested for the gene and their decisions based on the results of that test.

In May, Angelina Jolie added her voice by writing a New York Times op-ed about her preventive double mastectomy. Her mother had passed away from breast cancer and although she herself had not been diagnosed with breast cancer, she did test positive for the BRACA1 mutation. According to her article, she had an 87% chance of developing the same cancer that her mother had. Due to Ms. Jolie's celebrity, news outlets pounced on the story and the discussion shifted to outsiders thoughts on her very personal decision.

One of the people to weigh in, was another celebrity with the BRACA1 mutation. Melissa Etheridge went through breast cancer treatment in 2004, made a statement of strength when she performed without a wig at the Grammy Awards in 2005, and wrote the anthem "I Run For Life" that has been used to empower cancer fundraising marathoners since its recording.

In the article I read, Ms. Etheridge told a Blade reporter, when asked about Angelina Jolie's preventive mastectomy:

"I have to say I feel a little differently. I have that gene mutation too and it's not something I would believe in for myself. I wouldn't call it the brave choice. I actually think it's the most fearful choice you can make when confronting anything with cancer. My belief is that cancer comes from inside you and so much of it has to do with the environment of your body. It's the stress that will turn that gene on or not. Plenty of people have the gene mutation and everything but it never comes to cancer so I would say to anybody faced with that, that choice is way down the line on the spectrum of what you can do and to really consider the advancements we've made in things like nutrition and stress levels. I've been cancer free for nine years now and looking back, I completely understand why I got cancer. There was so much acidity in everything. I really encourage people to go a lot longer and further before coming to that conclusion."

Commentators were quick to vilify Ms. Etheridge's comment about the preventive mastectomy not being a brave option. I personally think this is an argument over semantics, and belief about cancer's origin. Ms. Etheridge is the lyricist to a song entitled Brave and Crazy, and probably a bit more picky with word choice. She may have chosen the word radical rather than brave. Either way, the discussion of the two celebrities handling the same gene mutation in different ways at least brings up an interesting discussion of choice for the rest of us.

I don't know what choice I would personally make if I had this genetic predisposition. I can see both decisions as valid. I do however, have some questions about if I, as a non-celebrity, would have the same options Angelina Jolie and Melissa Etheridge had. Let's face it, these two women most likely were not relying on their health insurance benefits to pay for the decisions they made.

I have read different articles, and spoken to different people who have had this choice to make and there were insurance issues that essentially made decisions for them. Some questions to consider in this discussion:

  1. Is the BRACA test available to anyone with family history who asks for it? Or is it tremendously expensive making it unavailable to some? Or contingent upon the family member previously diagnosed with breast cancer being tested for the gene before other family members can be tested through insurance coverage?
  2. Does the average person's insurance plan cover preventive mastectomy when this gene is detected, or is this not really an option for everyone? Also,
  3. Does insurance cover not only the mastectomy, but also the reconstruction afterwards?

According to the Susan G. Koman website, insurance companies are not federally mandated to cover prophylactic mastectomy. Currently that coverage may be available in one state and not another. I don't know if that will change when the Affordable Care Act goes into full swing. Perhaps, the basic standards of coverage, the act calls for, will include these forms of testing and treatment for all policies. 2014 will hopefully answer some of these questions.

So while I applaud Angelina Jolie for publicly talking about her decision, and appreciate Melissa Etheridge's thoughts regarding choice, I can't help but feel the discussion we should be having is regarding medical preventive measures and insurance coverage for those measures. The discussion the two celebrities are having really only becomes useful if those experiencing a similar decision have access to all the choices presented.

I'm hopeful preventive medicine will become the focus rather than an afterthought where physical and mental health is concerned. I'm also hopeful that the average person will have the same legitimate medical options as those who are not financially constrained. For now however, this is a good discussion starter regarding equality in medical coverage.

Please feel free to share your thoughts in the comment section below.