Cancer Inc.
Posted by Jessica Cussins May 28, 2013
Biopolitical Times
Angelina Jolie’s New York Times op-ed about her preventative double mastectomy continues to generate news and commentary. For those who somehow missed the many headlines, Jolie decided to undergo these surgeries because a genetic test determined that she carries mutations in the BRCA1 gene, purportedly leading (in her case) to an 87% chance of developing breast cancer. She felt that a mastectomy, which will greatly lower her risk, was the way to be proactive and take control of the situation.
As many have noted, baring such intimate details to the world took courage, and may inspire women to be more proactive about their health. But the information she shared can also easily be misunderstood.
Jolie states that breast cancer kills about 458,000 people around the world each year and that gene testing should be a preventative priority. But fewer than 1% of women in the U.S. have harmful BRCA mutations, and not all of them will get cancer. And most people who get cancer don’t have any genetic disposition toward it. The uncomfortable truth is that cancer is caused by many things; 70% of people diagnosed with breast cancer do not have any of the known risk factors, let alone the BRCA genes. Genetic testing is a valuable preventative tool, but only for a very few.
Moreover, the U.S. Preventative Services Task Force just updated its recommendation on screening for BRCA-related cancer risk in April. Its consensus, based on dozens of studies that looked at multiple aspects of the genetic counseling and testing process, was that most women should not get the BRCA gene test.
Jolie does address the fact that the BRCA test is prohibitively expensive for most women (the list price is close to $4,000), but she does not explain why this is the case. The reason is that one company, Myriad Genetics, effectively owns the BRCA genes. Never mind the fact that every one of us has them in our bodies, or that they are naturally occurring phenomena, Myriad has been steadfastly defending its patent on the BRCA genes for years. A lawsuit against the patents was heard by the Supreme Court in April, and a decision is expected in June.
As it stands now, no other companies can research the BRCA genes without Myriad’s permission and no one can offer a different test, even though it’s widely acknowledged that a better test could be made available for less. As CGS executive director Marcy Darnovsky and Breast Cancer Action executive director Karuna Jagger point out in an op-ed in the Los Angeles Times, Myriad’s monopoly has a disproportionately negative impact on low-income women and women of color:
However, all women who have a preventative mastectomy will face a different choice, one which Jolie completely passes over in her op-ed. This is the choice of whether to undergo reconstructive surgery, wear a prosthesis, or leave their body as it is. Jolie normalizes her own decision of reconstructive surgery by defining it as the last stage of treatment, as though it is medically necessary and just happens to have a cosmetic result. She states,
Silicone implants provide an option valued by many women. Jolie’s status as an international sex symbol may have made her decision almost inevitable. But not all women with mastectomies feel that an outward presentation of “sameness” is necessary, and it is worthwhile to know that there are other options, and strong, smart women who have chosen them.
Audre Lorde, a self-described “black woman warrior poet” described her own struggles with breast cancer and mastectomy in her 1980 book The Cancer Journals. She wrote,
Despite these counter-narratives, Jolie’s op-ed is already having an outsized impact. The day it was published, for example, Myriad’s stock went up 3%.
The ugly reality is that cancer is a highly profitable business. Lorde wrote about what she termed “Cancer Inc.” back in 1980. And as feminist G. Arunima notes in a recent blog post,
As many have noted, baring such intimate details to the world took courage, and may inspire women to be more proactive about their health. But the information she shared can also easily be misunderstood.
Jolie states that breast cancer kills about 458,000 people around the world each year and that gene testing should be a preventative priority. But fewer than 1% of women in the U.S. have harmful BRCA mutations, and not all of them will get cancer. And most people who get cancer don’t have any genetic disposition toward it. The uncomfortable truth is that cancer is caused by many things; 70% of people diagnosed with breast cancer do not have any of the known risk factors, let alone the BRCA genes. Genetic testing is a valuable preventative tool, but only for a very few.
Moreover, the U.S. Preventative Services Task Force just updated its recommendation on screening for BRCA-related cancer risk in April. Its consensus, based on dozens of studies that looked at multiple aspects of the genetic counseling and testing process, was that most women should not get the BRCA gene test.
[W]omen who might be likely to have the mutations – those whose family histories suggest they have an elevated chance of having the harmful versions of the genes – should then be referred to genetic counseling for further evaluation and discussion of the risks and benefits of testing. Only after such genetic counseling should DNA testing to look at BRCA variations be warranted.This conclusion, unlike Jolie’s, takes into account the potentially negative impacts of testing – the fact that inconclusive results are common and can lead to unnecessary treatment and stress. It is somewhat disconcerting that Jolie brandishes gene testing as a powerful tool of preventative care for all women.
Jolie does address the fact that the BRCA test is prohibitively expensive for most women (the list price is close to $4,000), but she does not explain why this is the case. The reason is that one company, Myriad Genetics, effectively owns the BRCA genes. Never mind the fact that every one of us has them in our bodies, or that they are naturally occurring phenomena, Myriad has been steadfastly defending its patent on the BRCA genes for years. A lawsuit against the patents was heard by the Supreme Court in April, and a decision is expected in June.
As it stands now, no other companies can research the BRCA genes without Myriad’s permission and no one can offer a different test, even though it’s widely acknowledged that a better test could be made available for less. As CGS executive director Marcy Darnovsky and Breast Cancer Action executive director Karuna Jagger point out in an op-ed in the Los Angeles Times, Myriad’s monopoly has a disproportionately negative impact on low-income women and women of color:
Since Myriad's test focuses on the variants that have already been identified, some women, especially women of color, are more likely to get ambiguous results. They are told they have a genetic variant but that Myriad doesn't know whether it increases their risk of cancer.Furthermore, as Jagger recently wrote,
At a time when we desperately need new insights into cancer prevention, diagnosis and treatment, the human BRCA patents stops vital scientific research and medical care connected to breast and ovarian cancer. One company serves as a gatekeeper for all research into these genes and therefore sets the research agenda—which is driven by corporate earnings from testing as well as future earnings based on all the bio-data they collect (and hoard) from women’s bodies.David B. Agnus notes in The New York Times that there is absolutely no reason for Myriad’s test to be as expensive as it is. Molecular scientists can now sequence an entire genome for around $1,000. Myriad’s defense – that insurance companies cover most of the cost – isn’t good enough. As Agnus points out,
lost in this answer is the fact that somebody — private insurance companies, Medicare, Medicaid — pays much of the rest. Ultimately, that means that all of us are paying in the forms of higher insurance premiums, co-payments and deductibles as well as higher taxes.Given that there is only one available test, priced prohibitively high, and with definite limitations, many women may not feel that Jolie’s “choice” is one that is really available to make.
However, all women who have a preventative mastectomy will face a different choice, one which Jolie completely passes over in her op-ed. This is the choice of whether to undergo reconstructive surgery, wear a prosthesis, or leave their body as it is. Jolie normalizes her own decision of reconstructive surgery by defining it as the last stage of treatment, as though it is medically necessary and just happens to have a cosmetic result. She states,
The final surgery is completed with the reconstruction of the breasts with an implant. There have been many advances in this procedure in the last few years, and the results can be beautiful.Speaking of her kids, Jolie explains her decision further: “It is reassuring that they see nothing that makes them uncomfortable. They can see my small scars and that’s it. Everything else is just Mommy, the same as she always was.”
Silicone implants provide an option valued by many women. Jolie’s status as an international sex symbol may have made her decision almost inevitable. But not all women with mastectomies feel that an outward presentation of “sameness” is necessary, and it is worthwhile to know that there are other options, and strong, smart women who have chosen them.
Audre Lorde, a self-described “black woman warrior poet” described her own struggles with breast cancer and mastectomy in her 1980 book The Cancer Journals. She wrote,
It is not my intention to judge the woman who has chosen the path of prosthesis, of silence and invisibility, the woman who wishes to be ‘the same as before.’ She has survived on another kind of courage, and she is not alone. Each of us struggles daily with the pressure of conformity and the loneliness of difference from which those choices seem to offer escape. I only know that those choices do not work for me, nor for other women who, not without fear, have survived cancer by scrutinizing its meaning within our lives, and by attempting to integrate this crisis into useful strengths for change… When other one-breasted women hide behind the mask of prosthesis or the dangerous fantasy of reconstruction, I find little support in the broader female environment for my rejection of what feels like a cosmetic sham. But I believe that socially sanctioned prosthesis is merely another way of keeping women with breast cancer silent and separate from each other. For instance, what would happen if an army of one-breasted women descended upon Congress and demanded that the use of carcinogenic, fat-stored hormones in beef-feed be outlawed?Other women have also found strength in embracing the new look of their bodies. After her double mastectomy, three-time cancer survivor Kelly Davidson got a tattoo of fairies and butterflies in the place where her breasts used to be. She exclaimed, "It is my badge of honour and strength, a piece of beautiful art that I wear with pride because it represents how I kicked cancer's ass and how breasts don't define who I am as a person or a woman." When she posted an image of the tattoo on Facebook in April, it went viral in just 48 hours. Tattoos after mastectomy have been an important form of dissent and expression for many women.
Despite these counter-narratives, Jolie’s op-ed is already having an outsized impact. The day it was published, for example, Myriad’s stock went up 3%.
The ugly reality is that cancer is a highly profitable business. Lorde wrote about what she termed “Cancer Inc.” back in 1980. And as feminist G. Arunima notes in a recent blog post,
Having been reduced to being a “consumer”, like millions of others, my response to these trends is primarily one of bewilderment, accompanied by mistrust of a medical system that’s clearly making huge profits whilst subtly introducing anxieties about possible health risks that one might embody, utterly unbeknownst to oneself… I would suggest we hit back by asking feminist inspired questions to the scientific establishment about access, costs, and the necessity of specific forms of treatment. That may be the way forward towards not only accountability to ‘consumers’, but actually for equitable health-care for all.Previously on Biopolitical Times: