By
Melissa Harris Perry
updated 5/19/2013 3:15:31 PM ET 2013-05-19T19:15:31

Angelina Jolie's op-ed in the New York Times, in which she talked about her double mastectomy, raised awareness about breast cancer and the gene, BRCA1, that puts women at high risk of developing the disease.

In a conversation on Sunday’s Melissa Harris-Perry, the panel talked about the complicated politics of cancer, health care, and the ways race and class create such a disparity when it comes to treatment and health outcomes. The culture surrounding cancer focuses so much on positive attitudes, “fighting,” and the newest technology that it has created an entire set of toxic messages to women about the right way to have cancer.

Angelina Jolie’s op-ed in the New York Times, in which she talked about her double mastectomy, raised awareness about breast cancer and the gene, BRCA1, that puts women at high risk of developing the disease.

“We want to feel that we have this measure of control, where we think if we do everything perfectly, if we get the right screening test, if we get the right reconstruction, we will be whole as people and we will get to survive,” said Salon‘s Irin Carmon. “We don’t have the power to control all of those things. Some people will die, and it[‘s not because they were weak or because they did something wrong in every case.”

Host Melissa Harris-Perry and her panel discussed the effect the privatization has had on health care and the politics of fighting cancer on Sunday’s show.

Breast cancer has become a multi-billion dollar industry for non-profits, drug companies, and the insurance industry, which has led to what some think is too much awareness.

The Susan G. Komen foundation came under fire last year over a battle with Planned Parenthood–which was seen as a departure from their mission–but as Carmon put it, the Komen foundation has always been “a politicized group that has claimed a non-political mission.”

Rose-Ellen Lessy, a professor at the New School and New York University, described what it felt like to be bombarded by instructions to be concerned about breast cancer while her mother was dying from it. She also spoke about America’s “pervasive testing anxiety” and how this anxiety will allow Myriad, the company that has patented the gene, to turn a profit on the fears of women.

Watch the discussion and watch the show every Saturday and Sunday at 10 AM ET on MSNBC.

Video: Your genes, your breasts, and the choices women face

  1. Closed captioning of: Your genes, your breasts, and the choices women face

    >>> this morning, my question. what is the real cost of a burger and fries? and congratulations class of 2013 . it's kind of a mess out here. plus, president obama speaks at more house college, but first your genes, your breasts and the choices that women face. good morning. i'm melissa harris-perry. it was hard to ignore the three most notable items in the news this week. no, i'm not talking about benghazi, the justice department subpoenas and the irs tea party targeting. i'm talking about anglin owe jolie and her left and right breasts. she and they were everywhere after we woke up to a tuesday morning new york times editorial from jolie about her difficult decision to undergo a prophylactic double mastectomy to reduce her likelihood of developing breast cancer . she knew the odds she was facing after a test revealed she had an 87% risk of developing breast cancer and a 50% risk of getting the ovarian cancer that killed her mother at age 56. jolie 's tests came back positive for a mutation on a gene known as brca 1. mutations on these genes like the one found in jolie 's tests exponentially increase breast cancer risk. a woman who has inherited the flaw in the genes is about five times more likely to develop breast cancer than a woman without the mutation. it is i terrifying possibility to consider both for woman who have tested positive and for women who haven't taken the test but fear what may be lurking in their dna. jolie said she was motivated to share her story by a desire to help women face that fear through empowering themselves with information. she wrote "i chose not to keep my story private because there are many women who do not know that they may be living under the shadow of cancer. it is my hope that they too will be able to get gene test and that if they have a high risk , they too will know they have strong options."

    >>> only women who carry genes with the brca mutation aren't the only beneficiaries of the test. so too the company that owns the exclusive rights to their genes. myriad genetics , a biotech company has owned the rights on it since 1998 . you thought your body belonged to you? think again. because every copy of each brca 1 and 2 gene in every cell of my body and yours belongs to a private company . so does all the information those genes may be able to tell us about our health. and while those genes are just hanging out inside your cells doing what genes do, they are busy making myriad genetics a lot of money. the patents give the company the sole right to brca analysis that angelina jolie test. nearly one million people have decided to take it in the past decade since myriad was awarded the patents. with no competition, myriad can set a single price for the test. any woman wanting to take the test, should be prepared to shell out $3,000. now, the affordable care act will allow patients to take the test at no cost as part of coverage for preventative care . but that's only for nongrandfathered plans. in other words, those that existed after march 23 , 2010 . grandfathered plans in place before that date are exempt from the ac requirements for preventative requirements. all of the tests add up to half a billion dollars each year in revenue for myriad genetics . the company's stock jumped up to a three-year high after jolie 's editorial on tuesday. that's just one company profiting from two genes. in the decade since the gee gnome project -- more than 4,000 have been snatched up and patent patent patented. 20% of the genome. 4,000 tiny pieces of ourselves that are not fully ours. myriad's monopoly landed the company in the supreme court last month where the justices took up this essential question of whether a private company can claim ownership that's a product of nature, in this case the building blocks of our very being. the answer for now at least is yes. myriad is still the only game in town for women who want to follow jolie 's advice and take the test. but perhaps as we consider the unsettling understanding that our bodies are not wholly our own, there is something else instructive in jolie 's example about the integrity of our bodies. jolie , we see a woman who makes a living due in part to the appearance of her physical body . making the choice to lose precious parts of it but still remaining fully whole. joining me now, dr. monica peek, assistant professor of medicine at the university of chicago . also a founder and executive director of women 's health advocacy group, sisters working it out. she's a breast cancer survivor herself. roselle en, erin car moan staff writer for salon.com and a political commentator and fellow at auburn.

    >> thanks for having us. ment.

    >> doctor, i want to start with you. help me to understand what tbrca gene is.

    >> it's not a routine test available for all women . when we think about breast cancer screening , it's uncommon. 90% of the women who have it don't have an inherited mutation. we should not think this is a routine test like for diabetes or for high cholesterol . we should not expect that everyone should be wanting to have a brca gene mutation test for that. of the tests that exists, brca 1 and 2 are the most common. african-americans so far are not. jewish women are. we know when you have the gene. the increased risk of breast and ovarian cancer is much higher than the average population. the genes are very uncommon. it's incouple bept for women to know their history and family's history and work with a genetic counselor to find out who is at risk for that gene. what normally happens the person diagnosed with breast cancer gets tested not the family members. if you have a family member with ovarian cancer and they're still living, they need to get tested for the brca gene . if they don't have it --

    >> there's not a reason to think it's in your family.

    >> rose, i want to go to you. you have had this test yourself.

    >> yes.

    >> in part because of your own family history .

    >> that's correct.

    >> yet, you still see access as a fundamental problem.

    >> i do. i feel like $3,000 to $4,000 test is completely out of reach for anyone who doesn't have quality health care insurance. when i took the test, i did have insurance and it covered most of the test except for $150 deductible. but at the same time, i think there's a pervasive testing anxiety right now so that women who perhaps are not actually good candidates to take the test might nonetheless feel that they should. those are women who certainly would not get the test covered through their insurance.

    >> this is probably why -- i mean, this is why the stock jumped up. because aum of a sudden -- particularly, there's enough of a question around mammograms, right. all of a sudden you hear there's another test, i better go out and get that.

    >> right. my concern is that myriad genetics who has a legal monopoly can profit from stoking the anxiety among women who, again, are not at high risk and don't need to take the test and making them think they do need to take the test. there's an unfortunate corporate profit to be made from stoking anxiety and perhaps failing to differentiate between who is high risk and who isn't.

    >> erin, you wrote about this in the wake of jolie 's decision. it's a tough one. on the one hand, we both need to applaud jolie 's personal courage but also the ways in which, whenever you have this celebrity endorsement , it allows information to get out that might not otherwise be there. but then there is this issue of profit margin and who really most benefits from these tests.

    >> the medical professionals and the aclu who brought the case, legal arguments were heard in april. specifically made the case that not only does the gene patent limit the kind of research that can happen. it limits the kind of results you can get. because it can only go through myriad's laboratories. you can't get a second opinion. the last portion of their argument, their brief says it has a disproportionate impact on racial and ethnic minorities. one because the genetic variants isn't captured on studies. two, we all know there's an existing framework. this is not in a vacuum. it's going to be governed by the same principles of who has insurance, who has what trust in the medical sis temd and as a result, there have been several studies showing that there are significant disparities who gets the genetic counseling to determine who takes the test.

    >> there isn't a second test. there isn't a second opinion. you can take the test again. but that is really very different. that's all because of the nature of the patent. is there a moral and ethical obligation that we not patent the genes or -- how do we sort of put that against -- on the other hand, the kind of economic benefit that comes from when you have a private company that makes profit, then they do work on this issue.

    >> right. i think this is an opportunity for us to think about how stories can affect social change so these benefits can be available to all women . we're talking about angelina's story not just because she's a story but because it's powerful. it has resonance. stories can inspire us to see ourselves differently. not just women with cancer. one of my dearest friends, joyce , is someone who is from a low-income background who is diagnosed with multiple myeloma this year. i watched her struggle every day to fight for the health care she needed for a disease that does not get as much attention as breast cancer . for us, among anyone i thought she would be the one who would be put off by the spotlight on a celebrity. but joyce was inspired. she said angelina looked bravely into the unknown and took action. we women can be the heroes of our own stories. i think our job now at the table is to think about how stories can affect social change , how we can fight for a world where all women like joyce have the opportunity to be as courageous as angelina jolie . how our health care system can work for all, not just those who afford it.

    >> when we come back, there's so much more on breast cancer . i want to talk about mammograms and specifically about things you both brought up. that health disparities and what kinds of groups are shut out of this whole story. so more on breast cancer in black and white when

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