May 142013
 

In an op-ed published today in the New York Times, actor Angelina Jolie explains that as a result of genetic screening, she learned she has the BRCA1 gene — a “carrier” gene that increases a woman’s odds of developing both breast and ovarian cancer.

Based on her screening results and family history of cancer, Jolie decided to undergo an elective, preventative double-mastectomy — essentially removing all of her breast tissue — a decision that lowered her chance of developing breast cancer from 87% to 5%.

The rest of Jolie’s article provides details about her treatment and explains how she felt empowered in making a decision for her health and for the well-being of her family that “in no way diminishes [her] femininity.”

But all of those details are secondary to her larger purpose. Jolie decided to go public to let women know “it is possible to find out through a blood test whether you are highly susceptible to breast and ovarian cancer, and then take action.”

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After I read Jolie’s op-ed, I did two things.

First, I sent emails to several cancer survivors in my family to ask if they were willing to share the details of their diagnoses with me. I also emailed two partners of family members who did not survive for details on the cancers that claimed the lives of their loved ones.

Second, after I sent those difficult emails, I dug through my filing cabinets for my insurance information, looking to find out whether my health care covers genetic cancer screenings.

Despite having a significant family history of both breast and ovarian cancers, I had no idea…

I didn’t know there were different types of either cancer.

I didn’t know genetic cancer screenings even existed.

Now I know. As strange as this feels to write, I’m grateful to Jolie for making me aware.

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According to her op-ed, that’s exactly what she aimed to do. Jolie uses her own medical details as a vehicle to promote awareness, to urge women to get screened, and if necessary, to take action (even if ‘taking action’ means a double-mastectomy).

Deservedly, Jolie has been praised for her decision to share her story in order to promote awareness.

But there’s also been a quiet undercurrent of criticism against Jolie for her privilege, and for her focus on agency rather than on the availability of affordable heath care that would enable agency.

That recognition — of privilege and of appalling heath care inequity — is not unwarranted. After all, Jolie has agency to make informed medical decisions — she has access to the finest doctors, the latest technology, the most-effective treatments, and the means to pay for it all. Many women do not. Jolie can afford to take off work during treatment and ensure her children are cared for during her recovery. Many women cannot.

Without adequate health care, the price of genetic screening alone is cost prohibitive for most women. Preventative treatment like elective mastectomies are not often covered under health insurance policies, and certainly, coverage for reconstructive procedures is very rare. Too many women in the United States have no health care coverage at all.

Recognition and criticism of the sad state of health care is justified, but criticizing Jolie is not. While many writers, bloggers, and public figures lauded Jolie’s decision to come out, several prominent voices also tempered their praise with almost postscripted disappointment that Jolie used her voice as a means to promote agency. Instead, it seems many would have preferred Jolie use her voice and her personal disclosure as a vehicle to discuss the more important and more far-reaching issue of affordable health care.

This is troubling to me for a number of reasons.

  • Jolie does, in fact, mention health care[1]. It’s secondary to her main purpose, but it’s there.
  • What she chooses to disclose and the rationale behind her disclosure is her own business. While I agree public figures should use their voices responsibly, Jolie isn’t obligated to say anything. Certainly, her promotion of awareness and agency is not an irresponsible use of her public voice.
  • Some women have the means to make informed decisions about their medical care and some women do not. It’s not fair, but it’s reality. The women who do have agency, those that have the means to obtain their medical information and have the power to make informed decisions should be encouraged to do so.
  • That message — ‘those with agency should use it’ — is diluted by combining it with messages about the desperate need for health care reform. They’re topically related issues, but they’re entirely separate because of their immediacy — women who have agency can make informed decisions about their health right now. Obtaining health care that would enable the same agency for countless women without adequate coverage will take more time. That’s the awful reality. Certainly, we can discuss both issues at the same time, but not by using this short op-ed by a single woman as a vehicle for both. There are other ways to advocate that would be more effective for proponents of both causes.

Praise Jolie for her bravery, for her actions, and for her willingness to come forward. Praise Jolie for her mission to encourage women with agency to make good use of it — to know their options and make informed decisions about their health.

Praise her for what she did.

Don’t dilute the good that might come of her actions by criticizing her for what she didn’t do.

 


1. “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, at more than $3,000 in the United States, remains an obstacle for many women.” (Jolie, “My Medical Decision,” para 16)

 

  16 Responses to “Angelina Jolie’s mastectomy: why we shouldn’t focus on health care reform”

  1. Actually, the BRCA1 gene is what my former mentor and roommate was diagnosed with having and her mother had died of breast cancer so she opted to have the double-mastectomy. You are righ there is large criticism and most insurances will not pay for this surgery. However, there are agencies and other organizations that do help pay for it because I helped her get them. I can find them again if anyone is interested just shoot me an email.

    Respectfully,
    mysticlez

  2. I am fully supportive of what Ms Jolie is trying to do. The issue of breast cancer has become much more prominent and is often curable if caught early enough or measures to prevent it from occurring are taken. I think that she is a brave woman for revealing her double masectomy as there are many women in a similar position (with the same level of influence) who would not..

    Your comment about the cost of $3k is partly reflective of the exorbitant cost of healthcare in the US (at least double the costs of any other country in the world). In many parts of Europe screening for breast cancer is a a routine matter and is included as part of the Day to Day healthcare that is provided through government healthcare provision.

    I realise in the US many people cannot afford to pay for medical insurance or do not have a package through their work that will allow them to obtain the necessary tests if there is a possibility that they could be vulnerable. This is more a reflection on the society than on any individual person.

    Fortunately for me, breast cancer in men is relatively uncommon and as there is no history of cancer in my family makes it more unlikely that I will suffer from it.

    • Your comment about the cost of $3k

      Just to be clear, the quote in the footnote is not mine. It was in Jolie’s piece — I included it as proof that she did mention health care costs. Quite a few writers are criticizing her for not mentioning it… and she did.

      Also, yes, health care is expensive and the US system has a lot of problems. However, that was not my point.

  3. $3,000 thats…really really messed up. Quick mental math tells me that the equipment and reagents needed to perform this procedure over 1,000 times would run you ~$2,000. Now that procedure would be fairly labor intensive, but since these sorts of things are already performed by technicians instead of MDs the labor cost is reasonable. I mean I understand the need to make a profit, but that seems exorbitant and a little exploitative, I don’t understand how the American medical community justifies these kind of prices.

    • that seems exorbitant and a little exploitative, I don’t understand how the American medical community justifies these kind of prices.

      *sigh*

      This is why I find criticism of Jolie and related discussions of health care costs troubling. It takes the focus off encouraging women (who are able) to make proactive medical choices to protect their health. It detracts from other important statements about empowerment, identity, and femininity.

    • the cost isnt in performing the test its in developing it. The companies that due this sort of thing spend hundreds of millions of dollars looking for a needle in a haystack. In addition to that in the usa medical companies are always subject to liability how much would it cost if a lawsuit later determined that the test was inaccurate and patients who thought they were healthy died. The simple cost of performing the test is never the only factor in the cost of medicine.

  4. I agree with you 100%. I’m one of those women whose health insurance is so shoddy I basically have none (my deductibles are outrageously high to keep my premiums as low as possible. I desperately needed chiropractic care once and all I had to do was pay $5k first to trigger my coverage).

    My point is that as I read her piece I was gripped with fear and a sense of total helplessness. I got angry, so angry. My mother had breast cancer, so did her mother. They both survived due to early detection and good insurance. I don’t have one of those and it terrifies me.

    I’m very proud of Angelina for her bravery to both take action and to share, but like you said, she’s also shined light on the darker underbelly of our crooked system. Decent health care shouldn’t be linked to employment, it should be a right, just like education is. I want those with agency to go get tested (I’m happy for you all), but I don’t have that privilege and it’s terrifying.

    I’m not sure what to do next.

  5. I wouldn’t criticise Jolie, even though she’s privileged. I would, however, criticise a healthcare system in one of the richest countries in the world that allows people to die of preventable diseases, particularly when any good doctor knows that an ounce of prevention is worth a ton of cure.

    There’s also something radically wrong with a system that overall produces worse outcomes for the majority of users, but costs considerably more than, for example, European systems. Even the cash-starved British NHS does far better. Whether it will stay that way once it has been outsourced to the private corporations that are queuing up to grab a slice of the action remains to be seen.

    Here in France, regular screening is the norm. Only this morning I made an appointment for my wife who had been notified by post that another check was due.

  6. Nikki and I talk a lot about the issue of women’s health and advocacy. I commend Jolie, because she’s taking action and making it public. How often do women have a public figure (like Jolie) speaking positively about meeting a health concern head-on? Certainly we can become derailed with the debate of health care costs and reform, but D, you’re right. Let’s concentrate on Jolie’s actions. The issue at hand is that we live in a country where we have control over our bodies and health. Dammit, we need to USE that power.

  7. I agree with your post, and even the comments seem to detract from Jolie’s message. Glad you also shed light on seeking preventative measures, to the point where you are seeking it out yourself.

    I hope the tests prove in your favor.

  8. I hadn’t caught any of this yet; thank you for pointing it out.
    I’ve been genetically tested because of family history and my insurance did pay for it but I was also given contact information for organization that help fund testing for women whose family history indicates they ought to be tested and are not covered for it. I’m with you on this one— Jolie is to be commended for this, in a big way. Yes, health care in the US sucks, but that does not change the fact that enlisting women as agents and informed advocates for their own health care is a powerful way to save lives RIGHT NOW.
    Social change and health care reformed are great, let’s work in it, but in the meantime, women need to get genetic testing and booby squishing done and there are lots of organization willing to help them do it today, even before the system is fixed.

  9. Wow, proof reading is such a valuable tool of effective communication. Too bad I didn’t do some of that.

  10. She did a very fine thing. Just reading the comments on her NYTimes piece was very moving… clearly she touched many women deeply around the central issues you raise. I felt similarly when Brooke Shields spoke out about the issue of parental depression… Both brave women.

  11. Many disparage those in the public eye for being greedy, selfish, attention whores, and when one does speak about a charity or a cause close to their hearts, it often gets ridiculed as a ploy for press. Well, here is a woman whom the media chases, not the other way around, who is utilizing her voice, and experience (both as the daughter of someone who died of breast cancer, and now someone who has had this surgery) to speak out both to and on behalf of women.

    That she continued her work (including traveling overseas to the Congo) should make it clear this is a woman who is speaking for the purpose of aiding the rest of us who do lack the privileges she has attained. Given that it caused you, DD, to know about the BRCA gene and to reach out to family members to see about your family history and potentially get tested, I’d say her piece, and by extent, she, did her job. I have no doubt there are many more women like you who had no idea about this but who do now.

    There is no doubt it is cost-prohibitive for the majority of women (myself included) She does, as you mentioned, touch upon that. She also sounds a call to arms to make breast cancer a priority worldwide. I think it’s one more step in a most basic goal – valuing women and women’s lives. I’m a fan of people speaking out about things. For every person, especially those in the public eye who speaks out about an affliction, that’s one more step to normalizing said affliction and making it okay to speak about it, and more so, to having people realize they too may suffer from said affliction and save their own lives.

    More so than just being an actress and a celebrity, she is respected by those most active and most respected in foreign relations (she is a member of the CFR – Council on Foreign Relations – which is VERY difficult to get into. Trust me, I looked into it.). She is in an incredibly unique position – she has the ear of not only the masses, but of those in the decision making role in the political world. So, she can perhaps affect the woman on the street, such as you and me, to go look up this BRCA thing, and she can affect the politicians who decide things like making breast cancer a priority in their countries and organizations to do so. My hope is that her speaking out will have positive repercussions both in America and world wide.

    • I think it’s one more step in a most basic goal – valuing women and women’s lives. I’m a fan of people speaking out about things.

      Agreed. This is why it annoyed the fuck out of me that people praised her for speaking out, but in the next breath, criticized her for not speaking out about the ‘right’ things. She educated me, and for that, I am grateful.

      Thanks for your thoughtful comment. :)

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