Maria Melee

On opening up to our world

Today, Angelina Jolie published an op-ed with the New York Times and let the public know that she underwent a double mastectomy and breast reconstruction to reduce her significant genetic risk of breast cancer.

I think it was brave of Angelina Jolie to make a hugely difficult decision for the sake of her health, future and kids. When it comes down to it, surgery sucks no matter how privileged you are. Because Angelina is a major figure in our culture and because she is valued in part for her physical attributes, it was also brave for her to go public with her story. By raising awareness, she’s opening herself up to all sorts of responses.

Obviously her ordeal is hugely complicated, and so are the responses to it. I can’t imagine dealing with the general public when it comes to issues like elective double mastectomy. For every individual who values her solely for her breasts, there’s another who wonders why it’s a “big deal” for a woman to have her breasts removed. There’s an entire spectrum in between and no matter how sheltered she is, some of that has got to touch her. I admire her willingness to open up to the world of strangers.

I believe that people need these stories put right in front of them. People need to consider that some women need to have entire organs cut out of and off of their bodies to try to survive. While no women amounts to her breasts alone, it’s undeniably unsettling and difficult to part with a part of your body. There’s nothing wrong with being horrified at the thought of having to undergo a double mastectomy. There’s nothing wrong with identifying that part of your body as part of your womanhood or part of your identity as a mother or part of your sexual well being.

With issues like this, if often takes a cultural icon like Angelina Jolie to get people thinking and talking. This woman is famous for her sexuality and breasts are tied deeply with sexuality in our culture. We’re thinking and talking about her boobs.

Her boobs are a spark that needs to start a bigger conversation. The conversation needs to be sustained. I’m not talking about a “conversation” that lasts a few days thanks to tabloid-style reporting and trending topics on Twitter. I’m not talking about a conversation that stops as soon as the next headline drops.

It’s okay if this conversation is about the problematic aspects of breast cancer prevention awareness in addition to how brave or honest or great Angelina Jolie is for sharing her story.

The problem with “raising awareness”

We’re aware now! We know that women with the BRCA1 or BRCA2 gene are at huge risk of breast cancer and/or ovarian cancer and sometimes elect to have major surgery to reduce that risk. Science! Neat! Genetic testing exists to help women (and some men) determine whether or not they are at greater risk for developing certain types of cancer.

So it’s just a blood test?

We should all get this simple blood test done? Well, not exactly. The most basic form of the test is about $300. The more comprehensive and effective panel costs between $3000 and $5000.

But insurance covers that, right?

Well, only if you are considered at risk by the criteria your insurance company chooses to adhere to. Some companies go by the National Cancer Institute’s risk criteria, such as having two first-degree relatives diagnosed with breast cancer under the age of 50, or three or more diagnosed at any age.

The short of it is, this test is not accessible to everyone and there is no exact standard for determining whether or not a woman with insurance will be covered for it. A woman without insurance is looking at a significant bill if she wants the comprehensive test done, even if she has close female relatives who have been diagnosed with breast cancer.

How about the mastectomy?

Bloomberg reports that a mastectomy can cost $15,000 to $50,000 or more. Depending on insurance coverage, this could be dialed down to a copay or might tap out a yearly out of pocket maximum. It depends on any given woman’s individual coverage. For someone without insurance? Well. That could be an entire year’s paycheck. Easily.

And the reconstructive surgery?

Angelina Jolie shared in her op-ed that her reconstructed breasts appear similar to the way they did pre-surgery, with only small scars. Without criticizing her as a person or criticizing her choice, I think it’s important to acknowledge that the ability to follow up a double mastectomy with cutting edge reconstructive surgery is a huge privilege. On top of the price of a mastectomy, the price of reconstructive surgery is very high, with a recent estimate running about $40,000. I’ve seen other estimates run as high as $50,000 per breast and as low as $5,000 per breast.

What about taking time off of work and getting help?

In her op-ed, Angelina Jolie said that she continued working and living her life over the three month span of surgeries. I have to question how much she was able to work and how that work compares to other types of jobs. How many working women, working moms, working grandmothers can bounce back from a major surgery? How long can they take off of work without losing their jobs, health insurance coverage or savings? How much help do average women have to cover the day to day responsibilities they won’t be able to attend to while undergoing major surgery?

Who really has a choice?

Ultimately, we need to talk about the fact that what Angelina Jolie was able to do was a choice and a choice that she was privileged to make. I think it’s incredibly cool that she acknowledged this: “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,” Jolie said.

We can’t afford to lose sight of the fact that every day, men and women have to choose between what they can afford and what could save their lives. I don’t have any magical solutions to propose. I wish I did. I hope we keep talking and continue advocating for affordable health care.

This issue feels personal to me. My grandmother (pictured holding me in 1980) died of ovarian cancer in her mid-50’s. I have close female relatives who have undergone full hysterectomies to prevent ovarian cancer risk. I had the less-comprehensive BRCA1 test several years ago when I was privileged to have excellent group health insurance. Even then, my gynecologist had to walk me through the application to make sure I answered every question in a way that would get the test covered. The test I had showed no mutation. Had it shown a mutation, I honestly can’t say I’d have the balls to do what Angelina did, even if I had the means. She’s no doubt a hero in my eyes, and by shining a light on the problems with “awareness” as a nebulous concept, I’m not downplaying what she went through or her bravery in sharing that story.

The bigger, enduring picture

Finances should not be an obstacle when it comes to survival. No one should be more afraid of financial ruin than they are of cancer. When we’re done talking about Angelina Jolie, we can’t afford to move on to the next celebrity’s shocking decision. Some celebrity’s upcoming inconsequential Twitter meltdown shouldn’t overshadow the conversations that Angelina Jolie has sparked.

Resources

Keep in mind that starting in 2014, the Affordable Health Care Act should help make breast cancer screenings more available to all women in the United States. Most breast cancer isn’t caused by BRCA mutations. Check your breasts and stay on top of the screenings that are recommended for your age and risk factors.

The Genetic Information Nondiscrimination Act (GINA) prevents health insurance companies and employers from making decisions based on the results of a test like the BRCA test, but it does not prevent life insurance, disability or long-term care insurance from making decisions (such as denying you coverage) based on your genes and risk.

I would love it if you shared any resources or thoughts you have on affordable health care and cancer prevention. I’ve found that Think Progress’s Health channel has good info, as well as Moms Rising. To learn more about breast and ovarian cancers, I’ve checked out The Inflammatory Breast Cancer Research Foundation, the Breast Cancer Research Foundation and the National Ovarian Cancer Coalition. Before you donate time or resources to a cancer organization, I recommend taking time to look into that organization’s mission, ideals and where funds are spent.