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May 13, 2013 10:09 PM   Subscribe

Angelina Jolie describes having a preventive double mastectomy in a NY Times op-ed. Her mother, actress Marcheline Bertrand, died of ovarian cancer at age 56, and Jolie inherited the BRCA1 gene, which carries a vastly higher risk of breast and ovarian cancers.

Mastectomies, even preventive ones, are both physically and emotionally taxing. Writer Lizzie Stark had one at age 27 for the same reason as Jolie, and discussed it one year and two years later.
posted by restless_nomad (129 comments total) 41 users marked this as a favorite

 
this is a much better post than the one i was just working on. i consider this idea from time to time - more often now that my grandmother has ovarian cancer. this is powerful stuff. good on angelina jolie for being open about it.
posted by nadawi at 10:12 PM on May 13, 2013 [1 favorite]


Wow.
posted by ReeMonster at 10:17 PM on May 13, 2013


Wow, that is a hell of a decision to have to make, and pretty amazing for her to be so open about it given her line of work.
posted by LobsterMitten at 10:17 PM on May 13, 2013 [10 favorites]


I can tell my children that they don’t need to fear they will lose me to breast cancer.

This is a very powerful action on her part, given the spotlight under which celebrities are forced to exist. She has my respect for her bravery. A pox upon those tabloids that will chose to exploit this.
posted by HuronBob at 10:20 PM on May 13, 2013 [29 favorites]


Life comes with many challenges. The ones that should not scare us are the ones we can take on and take control of.

A thousand times, this.

Good for her, and hope this helps in some way for at least some of the many women who don't have access to the same resources.
posted by scody at 10:23 PM on May 13, 2013 [5 favorites]


"In the United States, Myriad Genetics performs all commercial BRCA1 and BRCA2 testing. They report results within a month. (Abnormalities in other genes have been associated with breast cancer risk. Right now, these appear to be a less common cause of breast cancer than BRCA1 and BRCA2 mutations, although research is ongoing. If you want to be screened for those, talk to your doctor and genetic counselor about where to be tested.) The cost of the BRCA test ranges from about $300 to $3,000, depending on whether you get the limited test, in which only a few areas of the gene are evaluated, or the full test, in which hundreds of areas are examined on both genes.".
posted by maudlin at 10:26 PM on May 13, 2013 [1 favorite]


[Derail about cost removed, maybe we can start over without the namecalling and nasty sarcasm?]
posted by LobsterMitten at 10:26 PM on May 13, 2013 [4 favorites]


So if I'm reading that correctly, you may only have to spend $300 to find out if you carry the mutation. But if it comes up negative, you have to decide if you want to spend / can afford to spend $3000 more.
posted by maudlin at 10:28 PM on May 13, 2013 [2 favorites]


The BRCA genes are patented by Myriad, as I understand it. They "own" the genes and get to set the price for the test. They surveyed me when they were determining the pricing. It was like any other marketing survey. I'm afraid I was rude.
posted by ceiba at 10:29 PM on May 13, 2013 [31 favorites]


Wow. Kudos to her for both doing it and talking publicly about it.
posted by Jubey at 10:31 PM on May 13, 2013 [1 favorite]


The patents do begin to expire in about a year, though, so it's almost a moot point.

Anyway, Jolie says she had reconstruction which makes sense given her line of work. Is that similar to regular implants or a completely different procedure? I don't know much about it.
posted by Justinian at 10:31 PM on May 13, 2013 [1 favorite]


She has my respect for her bravery.

Me too.

I have to say she also has my admiration for managing to keep this out of the tabloids and getting the chance to talk about it on her own schedule. Living in a goldfish bowl has got to suck for things like this.
posted by Tell Me No Lies at 10:31 PM on May 13, 2013 [10 favorites]


Earlier posts on Myriad Genetics.
posted by roger ackroyd at 10:32 PM on May 13, 2013 [2 favorites]


What are the implications in terms of heath insurance if you find out you do carry the gene? If you pony up the $99/$300/$3000 for the test and discover you do in fact have the mutation that carries those incredibly terrible odds, can most people even make the decision she did to have the double mastectomy from an economic perspective? Do you now have such a "pre-determined condition" to the extent that insurance doesn't cover it?

I really applaud what she's done in discussing this so publicly, and am already preemptively grossed out at the inevitable Angelina boob-watch2013 the next time she appears in a strapless gown at an awards ceremony. But when I read that I also wondered: even if women could be emotionally buttressed to make such a decision, could most of them afford it quite literally?
posted by marylynn at 10:33 PM on May 13, 2013 [4 favorites]


For the record, an oophorectomy (removal of ovaries) will reduce your risk of both breast and ovarian cancer, by 50% if you believe some studies. I was told I had an 85% chance of breast cancer and after a ton of research and two genetics consultations, I had my ovaries removed. So far, so good. It's an outpatient procedure in the US if done as a laparoscopy and cost me "only" $7,000 ten years ago.

Regarding insurance, the genetic counselors sort of recommended that I pay for the consultation out of my own pocket and not report the visit or any test results to my insurance company, but this was 10 years ago. Another friend of mine had the test done at about the same time and it was paid for by her insurance, and as far as I know she stayed insured.
posted by ceiba at 10:36 PM on May 13, 2013 [1 favorite]


it seems strange that we didn't cover it at the time, but this is also something christina applegate has gone through - fairly similar story, except she had a cancer diagnosis in one breast.
posted by nadawi at 10:38 PM on May 13, 2013 [4 favorites]


But when I read that I also wondered: even if women could be emotionally buttressed to make such a decision, could most of them afford it quite literally?

In the long run, that's really the crux of the discussion, and you expressed it well. It really points out the inequality of the health care system.

I don't hold it against her that she CAN afford this, the tragedy is that not everyone CAN afford it.
posted by HuronBob at 10:39 PM on May 13, 2013 [5 favorites]


I can tell my children that they don’t need to fear they will lose me to breast cancer.

It's such a simple sentence, but there's so much in it.
posted by Pope Guilty at 10:39 PM on May 13, 2013 [2 favorites]


In a rational world insurance companies would be glad to pay for early warning tests and preventative treatment. The financial cost is far less than cancer care a few years down the line, not to mention the human cost of waiting.
posted by justsomebodythatyouusedtoknow at 10:43 PM on May 13, 2013 [7 favorites]


if you can consider this sort of thing a silver lining - the awesome philanthropic power of jolie/pitt will focus even more on this topic, i'd think. it won't help the economic reality of healthcare in the US, but i feel like they use their amazing privilege for good generally.
posted by nadawi at 10:44 PM on May 13, 2013 [5 favorites]


Especially for something so heavily linked and so preventative justsomebodythatyouusedtoknow (unlike say birth control where covering birth control delays more than prevents).
posted by Mitheral at 10:45 PM on May 13, 2013 [1 favorite]


A friend of mine wrote a book based on her PhD dissertation about the BRCA1 and BRCA2 genes. They are especially prevalent in Ashkenazi Jewish populations. The intersection between this genetic predisposition and historical anti-semitic prejudices of jews as being "diseased" and "sickly" is fascinating and horrifying. Link.
posted by lazaruslong at 10:45 PM on May 13, 2013 [15 favorites]


Another anecdote about insurance: When I was in the US, I was surprised by the number of doctors who cheerfully failed to record my genetic diagnosis in my record. I would verbally tell them if it was relevant, and they would casually say something like, "We don't need to write that down."

I also had one gynecologist offer to order the genetic test for me under a fake name, and the surgeon who did my oophorectomy used "ovarian cysts" as an excuse instead of the main reason. This was largely because I was self-employed and living in a state with only one insurance provider for the self-employed. If they dumped me, I was screwed.

I eventually solved the problem by leaving the US.
posted by ceiba at 10:47 PM on May 13, 2013 [27 favorites]


Anyway, Jolie says she had reconstruction which makes sense given her line of work. Is that similar to regular implants or a completely different procedure? I don't know much about it.

Total skin-sparing mastectomy in BRCA mutation carriers:
BACKGROUND: Total skin-sparing mastectomy (TSSM) with preservation of the nipple-areolar complex skin has become increasingly accepted as an oncologically safe procedure for both prophylactic and therapeutic indications. ...

CONCLUSIONS: TSSM is an oncologically safe procedure in BRCA-positive patients, as is evidenced by the low rates of tumor involvement of the nipple tissue and local-regional recurrence after therapeutic mastectomy. In BRCA-positive patients undergoing TSSM as a risk-reducing strategy, five-year follow-up demonstrates no increased risk for the development of new breast cancers; longer-term follow-up is anticipated to further confirm its safety.
This 2 page article from ABC News is a pretty good overview.

This About.com page gives brief descriptions of the three types of "sparing" mastectomies, with illustrations of naked breasts.

This brief video (1:57) shows glimpses of the surgery: as you would expect, it's pretty graphic.

A personal account about the nipple-sparing reconstruction can be found here. It is illustrated with before and after photos of naked breasts, but there are no surgical scenes.
posted by maudlin at 10:55 PM on May 13, 2013 [13 favorites]


Thanks, maudlin!
posted by Justinian at 10:56 PM on May 13, 2013 [1 favorite]


Thanks for this.

It's depressing that one of my first reactions was to brace myself for the onslaught of jokes about Jolie's breasts. Because you know what's hilarious? BOOBIES!
posted by medusa at 11:11 PM on May 13, 2013 [1 favorite]


Incredibly brave of her. However, I could have done without the shout-out to quack holistic cancer treatments and their practitioners. How'd that work out for Steve Jobs?
posted by Purposeful Grimace at 11:13 PM on May 13, 2013 [13 favorites]


I very much hope that if she goes on to have a risk-reducing bilateral salpingo-oophorectomy, which is pretty likely given her situation, she is as straightforward about it. As a famous, talented, articulate beauty, she could really open up a national conversation about surgical menopause, a common but usually hidden experience that presents some different emotional challenges from spontaneous menopause.
posted by gingerest at 11:14 PM on May 13, 2013 [10 favorites]


As a famous, talented, articulate beauty, she could really open up a national conversation about surgical menopause, a common but usually hidden experience that presents some different emotional challenges from spontaneous menopause.

I was thinking the same thing. I had to undergo medical menopause (triggered by radiation, not surgery) when I underwent cancer treatment in 2010-11, and I was stunned both by the near-total silence about its fairly intense physical and emotional toll, and by how few resources there are for dealing with it. It took me over a year after treatment finished just to find a practitioner in L.A. who had any extensive experience working with it at all -- and yet, it happens all the time to women undergoing treatment for a variety of cancers.
posted by scody at 11:20 PM on May 13, 2013 [14 favorites]


Our Feel-Good War on Breast Cancer: The battle to raise awareness has been won. So why aren’t more lives being saved?
posted by homunculus at 11:25 PM on May 13, 2013 [2 favorites]


Yes, scody, I think one of the least-acknowledged aspects of cancer in women, even breast cancer, where you'd reasonably expect people to talk about reproductive system implications, is how common it is to experience temporary or permanent ovarian dysfunction, and accompanying menopausal symptoms, as a result of treatment.

Just in case anyone is interested, the North American Menopause Society has a really nice guidebook available in print, Kindle, and iBook editions. (I'm not shilling and don't stand to gain in any way by providing that link - it's just a really good overview of the process, and NAMS is a good resource.) Ten bucks well spent.
posted by gingerest at 11:40 PM on May 13, 2013 [6 favorites]


What are the implications in terms of heath insurance if you find out you do carry the gene? If you pony up the $99/$300/$3000 for the test and discover you do in fact have the mutation that carries those incredibly terrible odds, can most people even make the decision she did to have the double mastectomy from an economic perspective? Do you now have such a "pre-determined condition" to the extent that insurance doesn't cover it?
The Genetic Information Nondiscrimination Act of 2008 prevents insurance companies from denying coverage due to your genome.
posted by delmoi at 12:32 AM on May 14, 2013 [4 favorites]


E Tu Destructo defends the article against critics.
posted by Charlemagne In Sweatpants at 12:45 AM on May 14, 2013 [1 favorite]


From that link:

It's easy when celebrities write editorials to spot the absence of lots of hard data, which is something most people don't do with editorials from people like David Brooks. Journalism, for most people who don't spend a lot of time thinking about it, always looks like journalism if journalists are the ones with the bylines, even when they just offer opinion. Despite the fact that Brooks makes shit up three times a week for a seven-figure salary, we expect more from foreigners and interlopers. If they're going to show up and shoot their mouths off, they better bring facts and figures. It's the guys who are supposed to be here who don't need to prove their points.

Heh.
posted by medusa at 1:15 AM on May 14, 2013 [2 favorites]


This was pretty much heroic on her part, considering what she does for a living, and who her employers are in this context. Heroic in the true sense of the word. My admiration for her is enormous right about now.
posted by New England Cultist at 3:22 AM on May 14, 2013 [3 favorites]


I never thought very much of her before, but this impresses me. She is speaking out about changing her body while being at the very top of a business where women are judged almost exclusively on their looks. If that could be set aside, more attention could be paid by non-actresses when making this big choice.
posted by wenestvedt at 3:30 AM on May 14, 2013 [3 favorites]


It's excellent to hear this news from the celebrity's mouth, as opposed to all the terrible paraphrasing and bullshit that we can expect to be exposed to in the next og knows how long. Good for her and all those who came before and will come after her. This is something that people should know about, whether it's freely available to all or not.
posted by h00py at 3:43 AM on May 14, 2013


it seems strange that we didn't cover it at the time, but this is also something christina applegate has gone through - fairly similar story, except she had a cancer diagnosis in one breast.

A UK celeb did the same thing here - not even as slightly high profile as Angelina Jolie, as I think she was in a girl band and mainly does reality shows now. I'm struggling to find a link that isn't from the Daily Mail and contains 73 irrelevant pictures from award shows, but here's something on it. I don't know whether this was done on the NHS or privately, mind.
posted by mippy at 3:50 AM on May 14, 2013 [1 favorite]


Ugh, my local library has a book on 'healing cancer'. It annoyed me so much that I wanted to take it to the desk and say that I thought it was irresponsible to have on the shelves, but with all the cuts recently I decided they could do without the hassle.
posted by mippy at 3:55 AM on May 14, 2013


mippy, see if you can get contact info for your library's collection development librarian(s)- they're the ones who make those decisions, and they don't always pull desk shifts.
posted by Pope Guilty at 4:05 AM on May 14, 2013 [3 favorites]


This makes up for so much of the disgusting self promotion that many celebrities indulge in. She's just great.
posted by orme at 4:16 AM on May 14, 2013 [2 favorites]


My husband's father's family carries the mutant BRCA-1 gene and a group of New Zealand doctors have been actively "mapping" the gene for the past few years. My husband's father and aunt tested positive and his uncle was negative (a big relief for those cousins).

At some point in the next few years my husband will have to be tested, and if he is positive then we will have to get our kids tested too - and then make sure they (particularly our daughter) are informed of the decisions they might need to make as young adults. When we first heard about it roughly 7 years ago I was pretty freaked out but it's obviously a much more common thing now. I still can't imagine urging my daughter to have her breasts and ovaries removed if it comes to that.
posted by tracicle at 4:17 AM on May 14, 2013


The comedian Erin Gibson of (among other things) the amazing Throwing Shade podcast went through this as well, and has spoken about it a few times. What an awful choice to have to make.
posted by saladin at 4:26 AM on May 14, 2013 [1 favorite]


It's important to note -- and without taking anything away from Angelina Jolie's brave decision and the peace of mind it's given her -- a bilateral mastectomy does not guarantee that you won't get breast cancer or a recurrence of breast cancer. It improves your odds. I did it and recurred ten years post reconstruction. It is impossible to remove 100% of breast tissue.

And for the question up thread about reconstruction -- it has nothing to do with implants. The reconstruction is done from the patient's own fat and tissue.
posted by thinkpiece at 4:33 AM on May 14, 2013 [5 favorites]


I liked this article. I particularly liked how straight forward she was about it all, no sensationalism and no beating around the bush either. The story is personal but not all self-involved and stuff.
posted by shelleycat at 4:37 AM on May 14, 2013 [10 favorites]


This is weirdly prescient, as I sit waiting to hear if the MRI done on my mom yesterday found the source of the cancer that an ultrasound and mammogram could not detect. In the week since she called to tell me of the tumors in her lymph nodes, I have struggled to beat back my feelings of panic for her and the guilt that goes with trying to figure out how to protect myself. Thank you for posting this.
posted by theBigRedKittyPurrs at 4:49 AM on May 14, 2013 [3 favorites]


And for the question up thread about reconstruction -- it has nothing to do with implants. The reconstruction is done from the patient's own fat and tissue.
posted by thinkpiece at 7:33 AM on May 14 [+] [!


I'm going to modify my comment with "in my experience ..." Prophylactic mastectomy without prior treatment (radiation, especially) might well be different, and allow for implants.
posted by thinkpiece at 4:54 AM on May 14, 2013 [1 favorite]


I'm going to modify my comment with "in my experience ..." Prophylactic mastectomy without prior treatment (radiation, especially) might well be different, and allow for implants.

I was going to say someone close to me had a non-prophylactic mastectomy and had reconstruction with an implant, twice even. It was replaced because apparently they have a life span rather shorter than a person's life (or the implants at the time did) and there was concern the implant would fail. At that point, she was given a choice of doing a reconstruction using other tissue or having another implant and went with another implant. I don't really know if implants have gone totally out of fashion since or when they're feasible, only that at least some people had reconstructions with implants.
posted by hoyland at 5:03 AM on May 14, 2013


What are the implications in terms of heath insurance if you find out you do carry the gene? If you pony up the $99/$300/$3000 for the test and discover you do in fact have the mutation that carries those incredibly terrible odds, can most people even make the decision she did to have the double mastectomy from an economic perspective? Do you now have such a "pre-determined condition" to the extent that insurance doesn't cover it?

I think some insurances do cover it; primarily probably because cancer drugs and surgeries once you already have cancer are way more expensive than mastectomies. The thing insurances might not cover is the reconstruction of the breasts, because it's not "medically necessary."
posted by corb at 5:13 AM on May 14, 2013 [1 favorite]


Jolie's piece says her reconstruction included implants.
posted by Linda_Holmes at 5:15 AM on May 14, 2013


It is increasingly recognized that the exponential rise in breast cancers is linked to chemicals in our environment. BRCA status is just one factor to consider. Until the underlying causes are identified and confronted the incidence of breast cancers in women and men will continue to rise.

I do a lot of work for breast surgeons, and know that every single day women are facing the same choices Angelina faced, often without the benefit of good insurance and with little support at home. Either way, t's heartbreaking and is a bona fide epidemic, but this is something discussed only behind closed doors as nobody wants to alarm the public. Heaven forbid.
posted by kinnakeet at 5:23 AM on May 14, 2013 [3 favorites]


In case anyone wants actual medical information to go along with celebrity anecdote, here is the Cochrane Collaboration review on prophylactic mastectomy. The bottom line: if you have bilateral mastectomies because you carry the BRCA gene and are at very high risk, then prophylactic mastectomy is probably worthwhile, although the evidence is not yet as strong as it could be. If you have a mastectomy because you had cancer in the other breast the evidence is much weaker that it improves survival.

As for the insurance implications, as of January 1, 2014, preexisting conditions will no longer affect insurance coverage. Yay, Obamacare!

And I have to say that although I am glad Ms. Jolie had a good experience and is happy with her care, the name Pink Lotus Breast Center makes me wince just a little. Their website is quite pink, as you can imagine.
posted by TedW at 5:31 AM on May 14, 2013 [7 favorites]


In case anyone wants actual medical information to go along with celebrity anecdote

In fairness, there is a lot of medical information in the op-ed. A lot. Not the studies you mention, but going from a baseline where a lot of people have no freaking idea what a BRCA gene even is, there's actually a lot of information there.

And I have to say that although I am glad Ms. Jolie had a good experience and is happy with her care, the name Pink Lotus Breast Center makes me wince just a little. Their website is quite pink, as you can imagine.

If you can create a breast center that can do a double mastectomy on Angelina Jolie and have nobody in the press find out for months, you can make your web site out of 1000 repetitions of a pink rose with a winged cherub sprinkling it with fairy dust while "Butterfly Kisses" autoplays in the background, and I will still think you are a freaking miraculous gift to the universe.
posted by Linda_Holmes at 5:35 AM on May 14, 2013 [52 favorites]


I personally know of 3 women who recently had double mastectomies, none of them were allowed to have their keep their nipples.
posted by Secret Life of Gravy at 5:39 AM on May 14, 2013 [1 favorite]


The reconstruction is done from the patient's own fat and tissue.

That depends on the patient: if they are very thin, and lack much fat to move around, it's not always an option.

The reconstruction and testing can be covered in some cases. For example, if the woman fits a one or more criteria (family history, young age, etc.) they may pay for the BRCA tests, and many will pay for reconstruction if it's not purely prophylactic (i.e., if some cancer is found).
posted by wenestvedt at 5:42 AM on May 14, 2013


What are the implications in terms of heath insurance if you find out you do carry the gene? If you pony up the $99/$300/$3000 for the test and discover you do in fact have the mutation that carries those incredibly terrible odds, can most people even make the decision she did to have the double mastectomy from an economic perspective? Do you now have such a "pre-determined condition" to the extent that insurance doesn't cover it?

The Patient Protection And Affordable Care Act, AKA Obamacare, prevents insurance companies from dumping patients due to illnesses and requires them to provide coverage even with pre-existing or pre-determined conditions. That is a cornerstone of that law.
posted by hippybear at 5:44 AM on May 14, 2013 [6 favorites]


SLoGravy, the nipple-sparing mastectomy is newish, inasmuch as its use has been expanded to cover more women as candidates than had been considered in the past.

It still depends on a lot of factors whether the patient can even be considered for it, like location of tumors, shape of existing breasts, requirement for radiation, etc., and AFAIK not all surgeons can do it.

Pretty cool that Science Marches On, however.
posted by wenestvedt at 5:46 AM on May 14, 2013 [1 favorite]


American incentives for healthcare are really messed up. It's interesting to read this after coming home from my third follow-up breast ultrasound, for what looks to be a benign cyst. It all started when the nurse practitioner who examined my breasts during my yearly physical said that since I had fibrocystic breasts, it was hard for her to figure out what were normal lumps and what might be dangerous lumps, and so scheduled me for a breast ultrasound.

During this ultrasound they found a particular cyst, that looked mostly fluid filled but that might possibly have some stuff inside. They recommended a follow-up appointment after six months to look at the cyst again. At that follow-up appointment, they recommended another follow-up appointment after six months, then another, at all of which nothing had changed and the cyst looked clear. Which brings me to today, which I thought would be the end of it, only to be told that the radiologist recommended yet another follow-up. I said, I was told that was the last of the follow-ups, why do you want me to come to another one? The technician told me that the american association of radiologists recommends following up on these things for two years, and since I was just shy of two years they were recommending another appointment.

Which frankly, is nuts. I would have been perfectly happy to wait another month or so before scheduling my appointment, so that I could have cleared this magical two year mark. But I guess that would have deprived the health center of the fees for yet another ultrasound, so they bugged me to death to make this appointment at exactly the six month mark. I'm sure if I were the person actually paying for this ultrasound, or if there was one central organization that had to take care of the health of millions of people using a limited pool of money, this kind of wasteful expenditure would be heavily discouraged. As it is, why should I care if the insurance company spends more money on another ultrasound or not?
posted by peacheater at 5:51 AM on May 14, 2013 [2 favorites]


This is weirdly prescient, as I sit waiting to hear if the MRI done on my mom yesterday found the source of the cancer that an ultrasound and mammogram could not detect

Thinking lots of good/healing thoughts for your mom, theBigRedKittyPurrs.
posted by sonika at 6:03 AM on May 14, 2013 [2 favorites]


Christina Applegate had the same surgery.
posted by Cool Papa Bell at 6:11 AM on May 14, 2013


But I guess that would have deprived the health center of the fees for yet another ultrasound, so they bugged me to death to make this appointment at exactly the six month mark.

No. They hit the equivalent of "follow up in six months" button in the PMS* and it sent a message five and a half months later saying "call patient X for test Y, follow up on Z."

You could think of it as trolling for fees. Or you could think that they're following the best practice for managing that particular symptomology, but the software wasn't quite smart enough to realize that if it waited 7 months, you'd need one less test.

Computers are really good at "call me in six months" and not very good at "call me, oh, in six months or so, whatever's easiest."

BTW: the total number of ultrasounds recommended, following a suggest of "every six months, for two years" would be five if you got one immediately (at 0,6,12,18 and 24 months) or four if you didn't (at 6,12,18 and 24 months.)




* Practice Management System. One thing these are very good at is dealing with followups. In the past, a doc would say "come and see me again in six months" and that would be it -- if you forgot, you forgot.

Now, they can set a flag and call you to remind you.
posted by eriko at 6:27 AM on May 14, 2013 [6 favorites]


You could think of it as trolling for fees. Or you could think that they're following the best practice for managing that particular symptomology, but the software wasn't quite smart enough to realize that if it waited 7 months, you'd need one less test.

OK, I take back the part about them scheduling another appointment simply to get more fees. Overall, I have been quite happy with the level of care. But I still do believe that the way things are set up, there's no incentive for them to do things like schedule an appointment at 7 months rather than 6 (or to program software that can do that). If patients were paying themselves, they'd be likely to kick up more of a fuss about that sort of thing, likewise if we had some sort of national healthcare system, with more of an incentive to minimize costs and still get good health outcomes.
posted by peacheater at 7:02 AM on May 14, 2013


With every passing year, my admiration for Angelina Jolie increases. From her mad pilot skills to her UN work to her willingness to share this experience to educate others, among only a few of her accomplishments, she is a both a badass and a true humanist.
posted by carmicha at 7:21 AM on May 14, 2013 [5 favorites]


But I still do believe that the way things are set up, there's no incentive for them to do things like schedule an appointment at 7 months rather than 6 (or to program software that can do that)

I assure you that if they thought for an instant they could get away with it, health insurers would write PMS software that would look VERY VERY HARD for ways to give people a little less care, and that they would *require* all care they paid for to use their special cost-saving PMS. And that people would die because of it.

If patients were paying themselves, they'd be likely to kick up more of a fuss about that sort of thing

If patients were paying themselves, there wouldn't be any useful point in getting breast ultrasounds at all, because if they found cancer almost nobody would be able to afford any useful treatment.
posted by ROU_Xenophobe at 7:27 AM on May 14, 2013 [3 favorites]


Jolie has a really finely-honed public persona. I can only imagine the personal angst of making the decision to have a double mastectomy. Even keeping the nipples physically present, I'm guessing sensation is lost, which is no minor thing. The surgery is non-trivial. I have a lot of respect for her humanitarian work, and for going public with this news. I hope she remains cancer-free.

I know I can say this for a lot of MeFites: Fuck cancer.
posted by theora55 at 7:43 AM on May 14, 2013 [3 favorites]


The cost of the BRCA test ranges from about $300 to $3,000, depending on whether you get the limited test, in which only a few areas of the gene are evaluated, or the full test, in which hundreds of areas are examined on both genes.

FWIW, a friend of mine got limited results from 23 and Me. It's definitely not a full screen, and they're careful to say it's not to be used for diagnostic purposes, but it gave her some peace of mind.
posted by snickerdoodle at 8:07 AM on May 14, 2013


I can't help but imagine medical students 100 years from now laughing at this barbaric treatment of these conditions, much the same way we look at trepanning and bloodletting today.
posted by dr_dank at 8:26 AM on May 14, 2013 [1 favorite]


About 20 years ago, I went to Univ of Miami to get genetic testing for BRCA1. My Paternal Grandmother died of breast cancer and my Maternal grandmother had ovarian cancer. Also, all of her sisters, save one, died of ovarian cancer. These are shitty, shitty odds.

I discussed my options with a genetic counselor and due to the health insurance laws at the time, and the lack of tissue from family members known to have died of cancer, we opted not to do the testing.

I've had a prophalactic hysterectomy, as has my sister. My mother had hers at the age of 37, having had two children, and she needed my Dad's permission and had to have her decision reviewed by three doctors.

All I can say is that I've known since I was 10 years old that I would be having a hysterectomy and that the sooner the better.

As my friends become menopausal and may or may not be considering hysterectomies, I find myself urging removal of ovaries as well. Why not? The hormones are depleting anyway and if you're having surgery anyway.... I tend to forget that not everyone lives with the spectre of OVARIAN CANCER.

Knowing that you have a potential ticking time bomb in your body makes you live your life differently and has you making Risk Management decisions with your health in ways that other people don't have to.
posted by Ruthless Bunny at 8:32 AM on May 14, 2013


But come on, you have to laugh at the line, "luckily I had a supportive partner, Brad Pitt."
posted by like_a_friend at 8:37 AM on May 14, 2013 [20 favorites]


I did chuckle a little at that, like_a_friend. I thought it was sweet.
posted by redsparkler at 8:42 AM on May 14, 2013 [2 favorites]


I also smiled at the Brad Pitt line. She's the only person in the world who can write that, so hells yeah she should take the opportunity. I also thought it was a nice way to get across the message about how important it is to have family support without crowing about her situation or anything.
posted by shelleycat at 9:44 AM on May 14, 2013 [1 favorite]


One thing that does bother me, wording keeps used about how x person has the BRACA1 (or BRACA2) gene. We all have this gene, it's a normal part of our DNA, it's just that some people have specific mutations of the gene which change it's function in ways that can lead to cancer. Unfortunately some of these are heritable and really likely to become oncogenic so those are the ones tested for and traced.

So it makes more sense to say an individual person has a specific form of the gene or a specific mutation within it or similar, rather than just "I/they have the BRACA1 gene", which is true but not really meaningful in this context.
posted by shelleycat at 9:54 AM on May 14, 2013


In case the BRCA1 & 2 gene mutations aren't enough for you, there's also Cowden syndrome, which increases the risk of breast, thyroid, and endometrial cancer.
posted by ceiba at 10:15 AM on May 14, 2013


One of my best friends texted me this morning: "Angelina had a double mastectomy. It's a crime!" I texted back that if she were near enough to throw water at, I'd do it.

Ms. Jolie's mother died from cancer. She is a mother. One of the most difficult conversations I've ever had in my life -- and it's making me sick right now when I recall it -- was the evening I told my son that I had cancer. He was 14 and I was 38. I waited for some time after I learned the news for certain, choosing a time after his semester had ended but well enough before my surgery. I tried to strike some kind of balance between factual and caring, with an overall upbeat tone. I was fortunate to be reporting that my cancer had very good odds, but even still, I barely kept from throwing up as I took away one more thing from my son's childhood.

Between what definitely needed to be done and the further choices I made, I lost most of my reproductive system. My partner makes fun of me for mentioning menopause in casual conversation -- why I'm not cold when everyone's shivering in the wind at the rooftop bash, why I look like I'm going to dissolve in a puddle of my own perspiration in the kitchen at the summertime party. Eh, I'm not going to stop. This happened to me and it will happen to other women in my life. There's nothing to be ashamed of. Back when my grandmother was dying of cancer, the specifics were too indelicate to mention. Now, breasts are mentioned on yogurt lids. Maybe we can claim cottage cheese for surgical menopause.
posted by houseofdanie at 10:31 AM on May 14, 2013 [20 favorites]


This makes up for so much of the disgusting self promotion that many celebrities indulge in. She's just great.


On the flip side of this... I just went into the break room here at work to get more coffee, and ran into a coworker who was watching the Today show on the break room TV... first she tried to engage me in mutual ripping on Lisa Rinna's face, and then she was all, "Did you hear about Angelina Jolie's little stunt? If it was anyone else in the world, I'd be so impressed, but that bitch... you know she just did it for the attention."

I officially hate people, and I sort of hope that coworker dies in a pit lined with sharp sticks. Ugh.
posted by palomar at 10:34 AM on May 14, 2013 [5 favorites]


Perhaps your co-worker meant, "...you know she just did it for the attention on behalf of millions of less-famous women who may not have this option, but should"?
posted by wenestvedt at 10:57 AM on May 14, 2013 [4 favorites]


She is so damn smooth. I think it's brilliant the way she scooped the tabloids on this and is leading the discussion in the only way that will take the primary media focus off of her sexuality (for a change) and place it instead on healthcare, where it belongs.

I can't even imagine how shitty it would be to be scrutinized by the public for years on end, every single day, the way she is. That she still likes people enough to want to be a voice of sanity tells me that she's a cool, cool lady.
posted by heyho at 11:04 AM on May 14, 2013 [4 favorites]


her willingness to share this experience to educate others

And it has worked as well. Both the BBC news as the Dutch main news bulletin paid attention to this story and talked to local women who had undergone the same treatment.
posted by MartinWisse at 11:12 AM on May 14, 2013


I was always an admirer of hers: a strong attractive woman who clearly controls her own life. I know she has a bevvy of PR folk who could have helped her write that piece, but whether she wrote it herself or was the final editor, I know the sentiments and tone are hers, and I admire her even more for it.
posted by Mental Wimp at 11:16 AM on May 14, 2013 [2 favorites]


This is a pretty good piece about the way Angelina controls her image. (found via)
posted by latkes at 11:42 AM on May 14, 2013 [9 favorites]


I have a good friend that's undergone this surgery, as well as a hysterectomy. She wears a t-shirt to all the breast cancer events that says,
"Yeah, they're fake, but my real ones were trying to kill me."

I am certain she is VERY glad this has caused this level of discussion.
posted by DigDoug at 1:07 PM on May 14, 2013 [7 favorites]


In a rational world insurance companies would be glad to pay for early warning tests and preventative treatment. The financial cost is far less than cancer care a few years down the line, not to mention the human cost of waiting.

While the details depend on the insurance situation, it is usually far cheaper for one to die at 65 years old than for one to live until 95 years old.
posted by nathan v at 1:18 PM on May 14, 2013


The problem with Angelina Jolie’s mastectomy and breast cancer awareness
posted by homunculus at 1:30 PM on May 14, 2013


My grandmother died of breast cancer in her early 40s, when my mother was 12. My grandmother's sister had died a few years earlier of the same thing.

When I was 12, my mother had to tell me that she had also developed breast cancer. Despite early and aggressive treatment, she died nine years later of metastases. She was a genetics researcher, and I know she worried about the hereditary pattern of the disease. One of the last things she said to me as she was dying was to ask me if I was worried I would develop it too. I said no. I lied. The BRCA genes were discovered shortly after she died.

Now that I'm closing in on the age my grandmother and mother were when they developed cancer, and now that I have a small child of my own, it is becoming increasingly clear that I would do just about anything to avoid having those conversations with my own kid.

I did go get tested for BRCA mutations, which fortunately were negative, so I don't have to make the decision that Jolie did. On the chance that my family's cancers were caused by a different genetic mutation, though, I will have fairly intensive surveillance for the rest of my life. I was able to access those resources relatively early on because I have a family full of physicians and geneticists, I work in a health care field, and I had enough money to throw at the problem that I didn't particularly care if the test was covered or not--I was going to get it anyway. (It was 100% covered).

I am very glad that Ms. Jolie decided to be open about her decisions and I hope it means that some young woman with fewer resources talks to her doctor--familial cancer patterns are particularly underdiagnosed in minorities and people in lower economic strata. I do hope, though, that it doesn't end up exacerbating the phenomenon of women with low-risk breast cancer that would be treatable with a lumpectomy deciding to get bilateral mastectomies out of excessive concern for bilateral cancer. I think that would be an unfortunate consequence of Ms. Jolie's bravery and willingness to speak out.
posted by The Elusive Architeuthis at 2:23 PM on May 14, 2013 [4 favorites]


dr_dank: I can't help but imagine medical students 100 years from now laughing at this barbaric treatment of these conditions, much the same way we look at trepanning and bloodletting today.
You are presuming that these "barbaric treatments" are ineffectual. No one - NO ONE - laughs at the Civil War surgeons performing amputations to prevent gangrene on the battlefield. There were instances of overzealousness, and horrifying details, but it is certain that many more would have died if their bleeding, filth-imbedded wounds were left to fester.

Mastectomies will be regarded the same way: too many done for too little reason, but then again, many more would have died without what was at the (this) time the most effective treatment possible.
posted by IAmBroom at 2:27 PM on May 14, 2013 [10 favorites]


Angelina Jolie impresses me so much. I'm glad women can look at her and see that her femininity is not diminished because of a double mastectomy, even if she had chosen not to have reconstruction. No offense to Christina Applegate, but Applegate always seemed a little nervous/apologetic, saying something like the silver lining was that she could get "amazing implants." Though she's allowed to feel vulnerable. Anyone would be. And she's a comedic actress so the joking is expected.

Jolie is very fortunate to have a good partner. I read awhile back how men tend to leave their wives and partners who get sick because they can't deal with it or it isn't what the husbands think they signed up for,etc.

(Kinda wondering if this can finally shut Chelsea Handler's mean girl-ing down finally. Probably not, but an avid celeb gossip reader can dream.)
posted by discopolo at 2:56 PM on May 14, 2013 [2 favorites]


homunculus: The problem with Angelina Jolie’s mastectomy and breast cancer awareness
The article quickly conflates Angela Jolie's role-model-worthy stance with a red herring of all the possibly unwarranted mastectomies being done. Ms. Jolie makes it very clear why she made her decision, and statistically it makes very good sense - not unnecessary, even if not provably, absolutely necessary. If the reader misinerprets her message, or doesn't read it, I don't see how Ms. Jolie can be held in any way responsible for that.

TL/DR: The only problem with Angelina Jolie's message has nothing to do with her message, so fuck off with your attention-grabbing shocker headline, Laruen Brown.
posted by IAmBroom at 2:59 PM on May 14, 2013 [9 favorites]


> The problem with Angelina Jolie’s mastectomy and breast cancer awareness

On one hand, I don't want to be a referee for public debate. I don't want to draw chalk around certain areas and say that they're off-limits. Even for this article, which is the dozen-paragraph version of saying "I don't knowwwwwwww…" without ever finishing the sentence.

On the other hand, I'm so goddamn tired of this Mad Libs-style rebuttal blog post from sneering contrarians. It's like a game of Chicken where various sites decide who's craven enough to write about "The problem with [widely-viewed-as-positive current event]." You know you're in asshole territory when Slate won't even touch it.
posted by savetheclocktower at 3:10 PM on May 14, 2013 [10 favorites]


a couple of articles about jolie's post surgery/mid treatment trips to the congo - london evening standard and the telegraph.

and here's brad pitt's statement and a little more discussion of their family from esquire.
posted by nadawi at 3:12 PM on May 14, 2013


On the other hand, I'm so goddamn tired of this Mad Libs-style rebuttal blog post from sneering contrarians.

Cancer: You're Having It (or Avoiding It) Wrong
posted by scody at 3:32 PM on May 14, 2013 [5 favorites]


Those links from nadawi: wow. I've never had any strong feelings, positive or negative, about Jolie up until now. And as impressed as I was with her op-ed today, finding out that she made some exhausting trips in between her second and third surgeries -- well, I think my respect for her just went to eleven.

No matter how mortal or muddled she -- and anyone else -- may be in other ways, she really seems sincere and determined about her humanitarian activities.

But once again: don't read the comments at those links.
posted by maudlin at 3:45 PM on May 14, 2013


On the matter of insurance coverage for reconstruction: since 1999, the Women's Health and Cancer Rights Act has guaranteed that if an insurance provider covers mastectomy, it must also cover reconstructive surgery. There are exceptions - religious employers are exempted, and I have Strong Opinions about that I will keep to myself - but for women who have insurance that covers breast cancer treatment, reconstruction is covered.
WHCRA details: Department of Labor; American Cancer Society.
posted by gingerest at 5:13 PM on May 14, 2013 [2 favorites]


So is she going to have her ovaries removed as well? Ovarian cancer is as bad ( worse maybe?)
posted by 922257033c4a0f3cecdbd819a46d626999d1af4a at 5:34 PM on May 14, 2013


I've been impressed by Jolie since I saw her incredible Inside the Actor's Studio interview, and everything more I learn about her, the more I'm impressed by her.

That being said... fuck cancer.
posted by Deoridhe at 6:41 PM on May 14, 2013


9222...4a, Ms. Jolie is only 37, and she may not have decided that she's completed child-bearing, so she may wait before she has risk-reducing bilateral salpingo-oophorectomy (if she decides to - it's a big, life-disrupting surgery, and not every woman at high risk chooses it). Oral contraceptives are commonly used for risk reduction in women with BRCA1/2 gene mutations who want to maintain their fertility. In women with BRCA1 mutations, pregnancy and breastfeeding have also been associated with reduced risk for ovarian cancer, so there are reasonably safe options that take family planning into account.

(It's thought that one of the ways ovarian cancer develops is repeatedly going through the ovulatory cycle. So lactation, which often but not universally suppresses ovulation, pregnancy, which definitively halts it, and oral contraceptives, which suspend the ovulatory cycle by design, all plausibly contribute to risk reduction. But the relationships haven't been fully explored in women with these gene mutations, and the evidence base isn't totally conclusive.)
posted by gingerest at 7:11 PM on May 14, 2013


She has also appeared with high-heeled feet. And yes, I am ashamed.
posted by hexatron at 7:41 PM on May 14, 2013


For my own part: I really like Angelina Jolie. She seems like a good person.

For the longest time, she really didn't register with me. Just another pretty face on a magazine. Ho hum.

But then I saw some photos of her, in Africa, chatting with regular folks. And she just seemed so nice, so kind. She suddenly had a personality to me and she became alive. Not in an Andy Worhol "face that's become an product" way but as real person.

(Dang! Her dad's a piece of work. I respect Jon Voight's acting, but he could have been nicer.)

In one way, this story doesn't surprise me. If anyone had the courage and honesty to talk about this in public, I knew she would. I am so, so sorry that she has had to go through this. But I am so grateful that she shared about this, and encouraged other women to think, be courageous and live their lives to the fullest.

Like I said, she seems like a good person.
posted by SPrintF at 8:36 PM on May 14, 2013 [2 favorites]


Good for her, both for hiding it from the media for so long and then coming out about it on her own terms.

I do ah, kind of wonder what this will do for her ability to get hired for films, though. I hope this isn't a career killer, but if anyone's set up to find out if it is, it's her.
posted by jenfullmoon at 10:28 PM on May 14, 2013


"Angelina Jolie had a double mastectomy, in case you hadn’t heard. How dare she remove those ticking time bombs from her chest, amiright? Like, hasn’t she learned by now that her body is public domain and we all get to vote on what she does with it? Sheesh, how selfish can ya get."
posted by zombieflanders at 6:06 AM on May 15, 2013 [4 favorites]


This is a pretty good piece about the way Angelina controls her image. (found via)

This was an odd piece. It seemed to vacillate between hating on Jolie for "controlling" her image and admiration for the image she projects...all without details that would enlighten us as to how she accomplished this.

The problem with Angelina Jolie’s mastectomy and breast cancer awareness

Apparently the need to snark is so great that the author conflates the problem of choosing double mastectomy in the presence of a cancer with the choice in the presence of BRCA1. Snarking from a position of partial ignorance only makes the writer seem petty.
posted by Mental Wimp at 9:02 AM on May 15, 2013 [1 favorite]


So, according to People magazine (words I never thought I'd type, admittedly), she will indeed be undergoing an oophorectomy.
posted by scody at 11:07 AM on May 15, 2013


people magazine is generally a good source - it's basically a direct line from pr people to the writers. they also have a very good relationship with the jolie/pitt family and i'd be surprised if they'd damage that with a false report on this issue.
posted by nadawi at 11:36 AM on May 15, 2013


scody: So, according to People magazine (words I never thought I'd type, admittedly), she will indeed be undergoing an oophorectomy.
Since Angelina herself says so in the FPP, that's not too much of a scoop.
posted by IAmBroom at 12:51 PM on May 15, 2013


Since Angelina herself says so in the FPP, that's not too much of a scoop.

She didn't actually write directly that she was also having her ovaries removed; it's implied, but not explicit (which is presumably why at least one person in the thread asked if she was having her ovaries removed or not). I posted the article as confirmation that she is in fact having additional surgery.
posted by scody at 1:12 PM on May 15, 2013 [1 favorite]


I do ah, kind of wonder what this will do for her ability to get hired for films, though. I hope this isn't a career killer, but if anyone's set up to find out if it is, it's her.

I don't think she's that vulnerable. She exudes a kind of self-possessedness and beauty that is really unique.

Though I hope whatever brohans in Hollywood crack jokes about her breasts get smacked in the face hard. How are these guys not ashamed to make jokes like that?
posted by discopolo at 2:00 PM on May 15, 2013


Since Angelina herself says so in the FPP, that's not too much of a scoop.

She says, "I started with the breasts, as my risk of breast cancer is higher than my risk of ovarian cancer, and the surgery is more complex. " But she might have meant she was going to pursue other risk-reducing strategies. Why so sneery?

I do ah, kind of wonder what this will do for her ability to get hired for films, though. I hope this isn't a career killer, but if anyone's set up to find out if it is, it's her.

There's no data I'm aware of, but I suspect surgically enhanced breasts are more common than not among working mainstream movie actresses in the US. The more subtle issue (subtlety is relative, right?) is whether she'll be viewed as untouchable because she's become identified with breast cancer. She's kept working after becoming identified with controversial things like refugee camps, husband-stealing, sibling-tongue-kissing, and Billy-Bob Thornton, though.
posted by gingerest at 3:52 PM on May 15, 2013


There's no data I'm aware of, but I suspect surgically enhanced breasts are more common than not among working mainstream movie actresses in the US.

I agree that her reconstructed breasts are almost certainly not going to be a problem in Hollywood, precisely for this reason of how common it is. I think the question of removing her ovaries and ensuing premature menopause will be a more interesting and unpredictable one, given the extremely tight Gordion knot of fertility/sexuality/youth/desirability that exists culturally for women in general and especially for female celebrities like Jolie.
posted by scody at 4:03 PM on May 15, 2013 [1 favorite]


The cranks and pseudoscience folks are already using this to push their medicines
posted by Charlemagne In Sweatpants at 6:02 PM on May 15, 2013


The cranks and pseudoscience folks are already using this to push their medicines
God DAMN that pisses me off.

On my way home I also listened to talk radio callers accuse her of "doing it all for the attention"
My daily routine of whipping myself into a rage via conservative talk radio and then coming home to my adorable puppy (like an emotional sauna) was pushed harder today than in recent memory
posted by jake at 7:56 PM on May 15, 2013


So I dealt with my stress thusly: my moms have long had a huge crush on the fetching Ms. Jolie (to the point of having named their miniature poodle after her) so I just gave Mom a call and we gushed about how much A.J. rules. I'm in a better mood now. I love you, Mom.
posted by jake at 8:07 PM on May 15, 2013 [4 favorites]


I think this is a breathlessly written piece that jumps to conclusions waaaaay too easily and is very uncharitable and kneejerk dismissive about Jolie and Pitt's statements, but I am curious about this lawsuit between the ACLU and Myriad Genetics. Hoping someone who loves to dig up links will do it, 'cause me and my laziness...
posted by ifjuly at 8:21 AM on May 17, 2013


I have already had ovarian and uterine cancer, and am at a higher risk rate for breast cancer (among other things) already. I haven't been tested for BRAC, but I sometimes wonder if I should even though I don't have family history of breast cancer. I definitely have regular exams and sometimes feel I am on a slow quest to have every diagnostic test known to medicine (I love that I can get cd copies of my cat scans).

Here's another piece from a woman who had a preventative mastectomy after finding out she had the BRAC gene.
posted by rmd1023 at 9:06 AM on May 17, 2013


there's definitely some stuff to be said about the legal positioning of all of this - but i certainly wouldn't take that information from a page that seems to be anti-vax.

there's this thing that happens when someone famous speaks up about something that affects them personally - suddenly everyone wants to weigh in on if they did it right, or soon enough, or too soon, or if they've considered the complicated legal, societal, and monetary issues and made sure that they were on exactly the right side at exactly the right time - they become the spokesperson for better or for worse. what i like most about angelina jolie's piece is how it focuses on her, the partner and mother and woman, who was trying to save her life. the company who controls the testing and their moral bankruptcy isn't her burden to bear. hopefully in the years to come she will use her influence and publicity power to help save more lives, but all these click generating headlines that make it her immediate responsibility are gross.
posted by nadawi at 10:11 AM on May 17, 2013


> the company who controls the testing and their moral bankruptcy isn't her burden to bear.

Yeah, I totally agree. By bringing up the lawsuit issue I didn't intend to imply the onus is on Angelina or whatever, despite the icky source seeming to think she's responsible. I think it's entirely possible for her disclosure to be an admirable and understandable thing while at the same time the gene patent issue being a huge can of worms and dubious motives. But maybe when I put it that way it comes across as too much of a derail.
posted by ifjuly at 10:35 AM on May 17, 2013


oh - i wasn't saying you were doing that - i was just commenting on that sort of article and my dislike of that angle. i agree that the gene patent thing is a big deal and should get some light shone on it. i much prefer the articles that say something like, "jolie did this thing because of this stuff and while it was difficult, it was helped by her privilege - now lets talk about what it's like for you or your mother or people on medicare and about how we make it better for everyone."
posted by nadawi at 11:07 AM on May 17, 2013


I think this is a breathlessly written piece that jumps to conclusions waaaaay too easily and is very uncharitable and kneejerk dismissive about Jolie and Pitt's statements, but I am curious about this lawsuit between the ACLU and Myriad Genetics. Hoping someone who loves to dig up links will do it, 'cause me and my laziness...

NaturalNews is bad news. They really don't have a leg to stand on in criticizing anyone for their ulterior motives. The issue of gene ownership (they shouldn't be patentable) is separate from the value of the test itself in predicting risk of breast cancer. I sure hope ACLU wins this one. And I hope it destroys the GMO patents as well.
posted by Mental Wimp at 1:20 PM on May 17, 2013 [2 favorites]


Angelina Jolie's cancer decision highlights row over genetic technology: Concerns that firms' rights to hold patents on genes linked to breast cancer is pushing up cost of testing for disease
posted by homunculus at 8:48 PM on May 19, 2013 [1 favorite]


A nice write up on the science behind the decision making at Science-based Medicine.
posted by gaspode at 7:04 AM on May 20, 2013 [1 favorite]


Thank you homunculus! You always come through.
posted by ifjuly at 11:32 AM on May 21, 2013


Facebook Rejects Breast Cancer Ad For Violating Ban Against ‘Adult Products’
posted by homunculus at 8:58 PM on May 25, 2013


Ad features a naked breast with only the nipple covered by fingers. The ad is sure to result in complains which dealing with will far out strip the revenue generated. Seems likely that the same ad showing less flesh would have been fine.
posted by Mitheral at 8:33 AM on May 26, 2013


you could find that same picture on a brochure in a doctor's office - hardly obscene. and, as the article points out, an illustration where more skin seemed covered was also rejected.
posted by nadawi at 9:55 AM on May 26, 2013 [1 favorite]


Breast cancer kills Jolie’s aunt: dies just weeks after star’s double mastectomy:
According to her husband, Debbie Martin had the same defective BRCA1 gene that Jolie does, but didn’t know it until after her 2004 cancer diagnosis.

“Had we known, we certainly would have done exactly what Angelina did,” Ron Martin said in a phone interview. ...

Ron Martin said after getting breast cancer, Debbie had her ovaries removed preventively because she was also at very high genetic risk for ovarian cancer, which has killed several women in her family.
posted by maudlin at 9:07 PM on May 26, 2013 [1 favorite]


I am curious about this lawsuit between the ACLU and Myriad Genetics.

Here's another article: Our Bodies, Their Cells? The Supreme Court will soon decide whether private companies can patent your DNA.
posted by homunculus at 4:31 PM on June 11, 2013


And the Supremes say: nope, human genes can't be patented. A unanimous vote. Also: Clarence Thomas wrote the decision.

New York Times

Tom Levenson
posted by maudlin at 10:36 AM on June 13, 2013


wait - i'm confused - if they ruled that the genes couldn't be patented, why did the company's stock rise?
posted by nadawi at 10:39 AM on June 13, 2013


And the Supremes say: nope, human genes can't be patented.

Well, hooray for Clarence. I just hope the loophole regarding cDNA doesn't negate the positive impact of the ruling. In the case of BRCA1/2, it is absurd that Myriad would be awarded a patent. The serious intellectual spade work was done by Mary-Claire King in identifying the gene. The sequencing, as I understand it, was mechanical and just a matter of time and resources. It was a race between Myriad and several other groups, including Dr. King. The group with the best resources won, but that should hardly entitle them to patent the gene Dr. King discovered.
posted by Mental Wimp at 11:59 AM on June 13, 2013


Supreme Court DNA patenting decision now has its own thread.
posted by aught at 12:08 PM on June 13, 2013 [1 favorite]


if they ruled that the genes couldn't be patented, why did the company's stock rise?

I presume that the stock price already had built into it an assumption that something worse would happen so people were pleasantly surprised. It's all about expectations.
posted by grouse at 12:23 PM on June 13, 2013 [1 favorite]


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