Angelina Jolie as Mrs. Smith.Angelina Jolie has been my hero for the past eight years. Her work with the United Nations Refugee Agency (UNHCR) was the first domino in a series of life choices that has led me to pursue a doctoral degree with a focus on social justice. There is little in my eyes that this woman can do wrong; however, over the past eight years she has made some decisions that I disagree with and her preventative double mastectomy is one of them.
For regular readers of this blog you will already know my stance on the politics surrounding breast cancer research and for those of you new to my blog you might want to give The Politics of Breast Cancer and Breast Cancer Awareness Month – “Business as usual” a quick read over. I am in no way saying that Angie’s decision (yes, in my head we are on first name and nickname basis) was wrong for her, but I am saying that if I had the opportunity to weigh-in on the matter I would have strongly discouraged her from the surgery. I understand why she did it; it was a rational decision. It was a decision based on math and her children. But this woman has always lived her life in the extremes. She doesn’t just act, she is an Academy Award winner. She doesn’t just give back, she was a UNHCR Goodwill Ambassador and now a Special Envoy. She doesn’t just have a family, she has a litter. What I worry most about her decision is the impact that it will have on other women and their decisions about “prevention.”
Unfortunately, Angie’s decision is pretty much one of the most preventative things you can do about cancer because all these scientists and doctors do not actually know what causes cancer. The cancer research community has lots of possible causes but there is no definitive answer; thus, society is put on its heels avoiding plastic, processed foods, fatty foods, dairy, and guys named Jim because all of these things have shown correlations with cancer (just joking about guys named Jim). Cancer research has been very successful at creating fear about cancer and has very little to show for in the way of “here is what causes cancer”. Even in Angie’s example, she wrote that her kids no longer have to worry about losing her to breast cancer, which is untrue because she still has a 5% chance of getting the disease and we have no idea where that 5% comes from. Are her odds far better than before? Sure, but I would hate to see the response from her family if she still ended up getting breast cancer after such a drastic attempt to say “not me”. Angie still has a 50% chance of getting ovarian cancer, which is what her mother (and best friend) died from. Is a hysterectomy in the cards further down the line? Perhaps, but how many organs can one realistically remove before cancer is no longer an issue? Ultimately, there was a chance before the mastectomy that she would have never gotten breast cancer, and today there is still a chance that she might still get breast cancer. (By the way, many women get breast cancer without having the so-called “breast cancer” genes).
Another issue I would like to draw attention to is that fact that, sadly, with the right resources one has the ability to buy health (or at least a better shot at enhanced health). She acknowledges in her OpEd that the testing alone costs $3000, which is unaffordable to many women. Who knows how much the actual surgeries cost but the fact remains that debt from health care bills is one of the leading factors of personal debt in the United States. How many women will now ask for the testing and maybe the surgery putting themselves into poverty? Others have highlighted that the reason why the test itself costs so much is because Myriad Genetics has a monopoly on the test purely so they can control breast cancer research and make money from people’s fear. Additionally, Myriad also now owns Angie’s genes, which is beyond my medical and patent understanding but as Breast Cancer Action explains:
Myriad Genetics holds patents on the human BRCA1 and 2 genes and therefore is the only company that offers the BRCA test. Other companies say they could provide a better test for a few hundred dollars but this monopoly gives Myriad control over research, diagnostics and development of treatments related to the BRCA genes.
Myriad Genetics is currently being sued by Breast Cancer Action and others who are trying to overturn their breast cancer patent.
One last comment she made in her OpEd that I took exception with is that breast cancer prevalence is higher in low and middle income countries. From all of the research I have seen that statement is completely wrong (but there is plenty of incorrect research out there). Perhaps, she meant that breast cancer prevalence is increasing in low and middle income countries, which would make sense because as globalization increases and the North American lifestyle infiltrates the world it brings with it our litany of problems. Breast cancer prevalance is higher in North America and other ‘developed countries’ than anywhere else in the world; therefore, merely having breasts isn’t a defining feature of breast cancer. It is something about our lifestyle and our environment that makes breast cancer part of our daily lives. As I have questioned in a previous post, why is it that the countries with the “best” medical care and top researchers have the highest prevalence of breast cancer? Maybe this is one of those instances where we should look to others for advice rather than assuming that we always know best.
I doubt that if I had had the opportunity to discuss the matter with Angie that her decision would have been swayed at all. But with the mediastorm that her decision and OpEd have created I think it is important that we have a balanced discussion. I would like to believe that her decision was based on a wealth of knowledge; however, the media that it has created seems rather one sided. Yesterday, on my local news, as with many I’m sure, the anchors interviewed a local oncologist discussing the testing and procedures with little critical discussion. Her OpEd circulated on social media just as fast as news did about the Boston bombings. What I didn’t see my friends posting on social media was the counter argument, so here it is.
Why Angelia Jolie’s ‘Medical Choice’ is likely not yours – The California Report