On Friday, the Supreme Court finally made their ruling in the Association for Molecular Pathology v. Myriad Genetics case. The case was complicated, and it involved the future of medicine, the future of DNA testing and pre-cancer screenings. Basically, SCOTUS ruled that human genes cannot by patented, which means that the ONE company claiming to hold the patent on the “faulty BRCA1 and BRCA2 genes” – if a woman carries the BRCA genes, she much, much more likely to develop breast and ovarian cancers – cannot “hold a patent” on the gene, because genes are “products of nature”. In the real world, that meant that only one company – Myriad Genetics – was able to screen and test whether women were carriers of the genes, and now that’s changed. These are the same genes that Angelina Jolie carried, and when she discovered her (very high) cancer risk, she underwent a double mastectomy.
SCOTUS’s ruling is good news for civil libertarians who don’t believe their genes are intellectual property which can be patented. In the wake of the decision, the real-world effects will likely be that costs for testing for the BRCA1 and BRCA2 genes will go down as more research centers and testing facilities can open up to patients. The ACLU issued a statement: “Today, the court struck down a major barrier to patient care and medical innovation. Myriad did not invent the BRCA genes and should not control them. Because of this ruling, patients will have greater access to genetic testing and scientists can engage in research on these genes without fear of being sued.” You can read more about the case and the SCOTUS decision here.
Interesting enough, Angelina Jolie also issued a statement, and from what I can see, she only issued this statement to CNN:
“I hope that this ruling will lead to more women at risk of breast cancer being able to get access to gene testing and to take control of their lives, not just in the U.S. but around the world — whatever their means and whatever their background,” she said.
I’m glad Angelina is being judicious about how and where she comments publicly about the nuts-and-bolts of her medical decisions and about the science of genetic screenings. In the wake of her May announcement, Angelina got some really snide criticism (in my opinion), but she was also “blamed” for an increased awareness of women’s cancer issues. I’ve read several issues bashing Angelina personally for the increased demand by women for cancer screenings and genetic testing. Like, women taking their health risks seriously and wanting to be tested for the BRCA genes are somehow a BAD thing.
Photos courtesy of WENN.
Ugh, how terrible of women to want to take preventative measures with their health. Crazy.
i know you are being sarcastic but people do think like this
It’s wonderful that people are more aware of the genetic testing that can be done, and that mastectomy doesn’t have to be terrifying or disfiguring. However, I’m concerned that being BRCA negative could cause some women to think they are “safe”. I’m BRCA negative, but that hasn’t stopped breast cancer from almost killing me!
I think part of why people have complained about women wanting testing is that only a small number of women are at all likely to have those particular genes. For instance, if you have plenty of female relatives and zero of them have had breast or ovarian cancer, it’s unlikely that you have that gene. It’s more likely to occur in Ashkenazi Jews than in the general population, and women who have a family history suggesting high risk may want to get tested. But should all women be able to get the test paid for? If you have way less than 1% risk of having the gene (not Jewish, and no family history) then should a $5000 test be easy for you to get? There are still kids in the U.S. who die of asthma that could have been easily treated if they only had access to quality healthcare. What those in the medical profession have been complaining about is that when low-risk women demand testing, that money has to be taken away from somewhere else. But I think Angelina did a great job writing about the issues, and she’s right that this recent decision allowing other companies to make BRCA1 & BRCA2 tests should bring the price down drastically.
All women, regardless of family history, should have access to the potentially lifesaving test. An old school friend had no family history of breast cancer and ended up being the first in her family with this faulty gene. She had no idea she carried it and perhaps if this test was offered to all women at say 18 she would still be alive because she could have taken preventative measures. She died two years ago at the age of 25 leaving behind a husband and three children.
Another friend and her family have the gene, she and one of her sisters had their breasts and ovaries removed in order to save their lives. Their youngest sister chose to wait as she was 28 and wanted to have another child. 6 months ago she was diagnosed with stage 4 ovarian cancer- something that isn’t easy to test for. Her cancer is rare, aggressive and doesn’t respond to regular treatment.
The point is, we need to have access to these tests and not just people with money. All women. Men can get tested easy as pie for potential cardiac issues so why can’t women get tested for thing that may affect them without hassle. I know it’s different in the US then it is here in Australia where we have universal healthcare (seriously what is your guys problem with that?) but women shouldn’t die anywhere just because they couldn’t afford treatment/tests.
Just a comment on the asthma part of your comment. It is crazy to me how EXPENSIVE asthma medication is in the US. It is just insane. My sister is a heavy asthmatic and when she went over to the US to live for a year she had to stock up and take a year’s worth of asthma meds with her because the price in the US was so high that she just wouldn’t have been able to afford it. It’s crazy to me that the US has one of the best medical communities in the world and is on the forefront of so much in medicine, and yet your health system is just awful. I spent 3 months in the States last year and everyone I knew or met over there was terrified of getting sick because of the costs involved. That is just wrong.
Thanks sharing the real meaning behind SCOTUS’ ruling. I hadn’t heard it was in reference to BRCA genes.
This should make the screening available to women lacking Angelina’s wealth (like me, and most of us) and also advance research.
We’re lucky Jonas Salk wasn’t in medicine to make a buck – he could have patented the polio vaccination, but instead he chose to SAVE LIVES. Unlike those avaricious monkeys at Myriad. I’m glad they finally lost but women will suffer and die because of their greed and legal delays. They should be ashamed.
Frederick Banting and his team patented insulin, but then essentially gave the patent away to fund research. The reason insulin is cheap, even today, is because they cared more about saving lives than getting rich.
“Like, women taking their health risks seriously and wanting to be tested for the BRCA genes are somehow a BAD thing.”
Exactly. It’s almost if the patient doesn’t have a peen, the patient doesn’t count. I think that female health issues are dismissed still and chalked up to hysteria. So frustrating.
It is so true – my father’s family has a huge (HUGE) risk of early onset heart disease, as in my uncle died at 30 from his first heart attack, my grandfather from his 4th at 42, and my dad had 2 back to back heart attacks at 36. My cardiologist pretty much poo-poohed me because I was female and young, so he believed my risk was lower. I changed doctors and my new one did all the tests. Guess what? I have ALL of the markers my dad has and my risk is triply higher than my brother. Sometimes you have to take your health into your own hands because too many doctors fall into the textbook “but you aren’t in the criteria” pattern. You don’t know how many times my own health problems didn’t fit the “but you don’t fit the profile of someone suffering from …..” and had to have emergency surgery.
Wow…thanks for your testimony.
I wish you all the best for your health.
They’re so lazy. When you push and actually require a lazy doctor to WORK, they resent you for it and want to only prove how right they were to begin with. My mom had some bloodwork done and told her she had HIV and wanted to put her on a strict medical regimen. She told them it was impossible, as she was tested after my brother was born and didn’t have sex after that cuz she and my dad divorced. Anyways, doctors thought she was in denial and ignored her. Finally, she found a doc who listened and gave her a true diagnosis: she had early signs of lupus. You have to fight for your health, even when they give you a diagnosis, get a second opinion.
Good for you for taking charge of your health. After two decades as a nurse in high-risk areas, sadly I can tell you that you are the exception to the rule. My number one frustration was with people’s apathy towards their health. I cannot tell you how many times people could not name the medication they were taking and the reason for taking it. And don’t even get me started on the smoking/drinking/eating a horrendous diet. Many Americans would rather act like six year olds at a continuous birthday party than to make any changes to improve their health. They’d prefer to continue as they want to and then demand that their doctor “fix” the problem with the latest pharmaceutical.
@Amurph Good for you being diligent and insistent about your health.
I hear you, rn. I’m a medical social worker and i spend a lot of time educating my patients about their disease process. I have a lot of renal patients, especially, who make a daily routine out of things they know can easily kill them. It’s their choice to live like that and i respect their autonomy, but then don’t yell at the nurses and doctors because you feel like crap and your health is failing. Getting a patient who is making an effort to educate him or herself, while being willing to listen to the medical staff, is rare but very much appreciated.
Thank you all. I feel like I’m an exception, only because my family has such crappy genetic history. A lot of diseases pop up (my dad has two types of Crohn’s, heart disease, and missing parts of his intestine while my mom has a rare vascular disease, is in remission for stage 3 melanoma, and had a rare tumor on her spleen) and if we hadn’t pushed for things, it would’ve been bad. I do know that there are a lot of people who aren’t as pushy or aware or are apathetic. But, it’s very much a double edged sword though – sometimes people are way too pushy (my doctors probably feel that about me, especially since I’ve proved them wrong twice now) and seek out tests that they probably don’t need but think they do per the internet or they don’t push in fear of being deemed a hypochondriac. It’s horrifying to think that companies would try to patent genes because a lot of people already don’t seek out medical attention solely because of the price tag, even when it’s a necessity.
Here’s the thing. I think women’s health issues are not given the attention they deserve for a myriad of reasons including the lack of understanding that women’s bodies are fundamentally different than men’s bodies so women have their own set of reactions and illnesses.
HOWEVER…the internet is not always used for good. Many people read something on the internet and then go to their doctor with some whackadoodle theory. Imagine spending all day sifting through misinformation with patients instead of spending your limited time with said patient actually treating them?
Because of this, the informed patient frequently gets ignored. I know because I had a fairly heated argument with my specialist the first time I met him about what my issues were. He came back and apologized the next day (I was in the hospital) and is the best doctor I’ve ever had. But he’s rare.
My point is I understand the backlash against Angelina, however misguided. I am sure there are women with no history of cancer in their family now hysterically demanding expensive and unnecessary testing. Nonetheless, it is being talked about and that is a very good thing.
Lucinda
Your experience is all too common. Doctors get so frazzled because of random symptom sites. A rash could mean a million terrible illnesses or it could just be a rash from… poison ivy.
At least your Specialist ate some humble pie, but you sometimes get jerks too.
AJ brought awareness out and that’s good. With awareness comes funding and screenings. If a woman is now freaking out because she heard a celeb got a double mastectomy she will freak out over most anything. No one is to blame for this woman’s hypochondria.
And history of cancer or not, a woman should do a proper breast exam at least once a month during her cycle. It takes maybe 2 minutes and can save your life with early detection.
Side note: This ruling is awesome because if a patent could be placed on a gene everything was going to become crazy expensive and only the very wealthy could survive. It would have been terrible for the world and great for the pharm companies that held the patents on genes.
Well MOST people don’t want to know if they have cancer or not and Angelina through her double masectomy reminded them of their own mortality.
Many people would still prefer ignoring they may have a lethal illness like cancer. Many still prefer the name ‘cancer’ to be erased of any form of conversation or subject they may encounter as if ignoring it would give them some kind of immunity from it.
Sometimes rather than facing the hard truth a person’s psyche goes into auto pilot and denial is the only route they take. Not always that they willfully ignore a possible cancer diagnosis hoping it just clears itself out of the body. And sometimes people just won’t confront it. Survival rates for cancer patients are going up all the time, but to some it’s still seen as a death sentence.
I think you’re right that Jolie talking about it hit a sore spot on some people as far as not confronting their issues while she brings her out into the spot light, but I’m betting it’s also because people just hate the woman. Any reason will do. IDK why there’s so much hate for the woman. She’s private and well spoken. Works hard, loves her family, and is extremely charitable. Now she brings awareness to (in many cases) a preventable cancer if caught early. I don’t get the hate on this woman.
You don’t? She’s a world- class homewrecker. She’s the devil incarnate. She broke up the Golden Couple!
🙄
@janet
i wrote a reply to you before but it didn’t get posted. when i wrote a second one without a link in it, it did but not as a reply (i’m on my phone so that’s probably why). my name is still ‘aleks’ (just press ctrl + f and type in “aleks” to find it quicker)
Ok, that makes zero sense. How can you bash someone for increased awareness?! Could the articles be stating that she triggered some kind of panic? I dont know, that doesnt make sense either.
I never liked Jolie on screen, save for 2 roles from her much younger days. I wish she would just let that go and be a full time activist. Totally over rated as an actress but a pretty good humanbeing.
This exactly. I’m not a fangirl at all with Jolie, but I have an enormous amount of respect for her as a human being and activist, and I truly don’t get how people can be critical of her for efforts to raise awareness about women’s circumstances globally.
while I agree with both of you, I WILL say this: from what I’ve seen of all the “bashing”, people generally don’t disagree that her work is good. They question the motives of her good work. And that’s completely and one hundred percent healthy. we don’t know anything about her or what she truly is like in private. a dollar given is a good thing, no matter whose hand it came from. yes. but to give her such high accolades as to reject a sense of healthy reality? nope. honestly, I know people in hollywood and the general consensus of her is that she’s extremely uptight and scary. she brings in good money and so people tolerate her, but she is truly frightening.
I have heard that people who have worked with her find her surprisingly approachable and kind.
This ruling is a very very good thing. Maybe someday, I’ll be able to afford the test.
I heard some sensible arguments about undergoing unnecessary breast surgeries, when in reality, many breast cancers are of the extremely slow growing type that never metastasis. But we don’t know yet how to differentiate between the two types, so we have to react aggressively to each and every diagnosis.
UsedToBeLulu –
My cousin had just been laid off when she was diagnosed with breast cancer. She was on medicaid which would not cover the test but she wanted to be tested since she has two daughters. Susan G. Komen paid for the test and she will forever be greatful for that charity.
Thank you thank you! I will look into this. I have just been laid off as well. *sigh*
You’re welcome and good luck to you.
For the life of me, I cannot understand the shade being thrown at Angelina Jolie regarding this issue. She has highlighted several important healthcare-related issues, not the least of which is the out of control costs that individuals must bear. If even one woman’s life is saved because she now knows enough to go and have the BRCA testing done, then it has all been worth it. Hopefully more women will have access to the testing needed for this, thanks to SCOTUS.
I am a two time breast cancer survivor, and have had genetic testing. ANY person, famous or not, who shares their personal battle in an effort to raise awareness does not need to be bashed. Genetic testing was horribly expensive when I had it done 5 years ago, and my insurance did not cover any of the cost. I hope that this ruling will make the testing affordable to all.
So stupid she was criticized. I had no idea ppl would actually do that. Because, what, they have to work in giving women answers?
In terms of the court decision, THANK YOU! There’s something so wrong about humans (read: men) trying to “own” something created by nature, especially as it pertains to general health and women’s health. What is wrong w ppl that they have to have ownership over someone else’s genetics? That kind of greed is disgusting and exactly what’s wrong with the world. Why can’t you just do work for the greater good? Glad the SCOTUS stopped that.
“what is wrong with ppl that they have to have ownership over other peoples genetics” Its called MONEY! These self-seving labs would rather make millions than save millions…its pathetic…
I completely agree with you, but ……
Unfortunately, money is what drives research. This is why government-funded research is essential, otherwise this decision could have devastating consequences. If these companies don’t get patents ensuring years of top dollar money, they simply won’t put in the time and effort.
This is why we’ll probably never see a cure for chronic diseases – after all, how much better does it get for drug companies than people paying you for a lifetime?
Well this decision is a double-edged sword. The thing that is driving companies to do research (with government research dollars getting ever harder to get), is the hope of profits if they can develop a good test or treatment. This isn’t right, but it’s how pharmaceutical and other medical product companies work. If there’s no incentive there may not be push to develop new tests. At least in the pharmaceutical business many drugs eventually go generic and get cheaper.
Personally I’m glad about the court’s decision. But the general responses here are kind of simplistic.
Also, although people have absolutely no control over their genetic inheritance, a much larger percentage of illness in the US is due to people’s own behaviors – eating too much, smoking, not exercising. So it’s not all in the “lazy” doctors’ hands.
Some of the comments were just so sick. She never said that everyone should make the choice she made. She said that women should be informed to make the best decision for themselves and their family. Truth is KNOWLEDGE is POWER. If you know all the options then you don’t have to take what any doctor says as the only choice. You do your research. You weigh the options. This is what she did. As Brad said they knew about this for some time. We see story after story of women that found cancer in one breast; had the surgery, then cancer was found in the other breast later. That is no an unusual story. It happens over and over.
The thing that is so scary to me is the women that don’t want to know because of fear. That there are women that would rather lose their lives then breast or give up the chance to have children. That happens more than some may think. Women who don’t do anything until they find the cancer, and sometimes it is too late then. Then your choices are very limited.
I don’t understand the attacks. and the saddest is that there were women doing it. SMH at that kind of nastiness because you don’t like someone for whatever reason. The point is if your history is like hers then get the facts and info so you can do what is best for YOU.. KNOWLEDGE IS THE POWER
Glad she is doing well; and that after the surgery she found out she was cancer free.
+10! Good for angelina for making choices fo her health.
this is great! science, ethics and the law meet at just the right point…
makes this day so much lovelier to me…
+1
You got that right!! I have no doubt that Angelina going public about her private health issues helped sway the day in favor of women~now we just have to keep fighting the infringement of our human RIGHT to birth control and control of our own choices over abortion. Ladies, the conservative/relgiious platforms are ABSOLUTELY trying to erode womens rights, and in a few states they have (very frighteningly) been VERY successful. Remember that we do NOT have equal rights guaranteed to us under the US Constitution~which is why these individual state legislatures can turn back the clock against women. Educate yourselves about what is going on politically, before it is too late!! Don’t get complacent~remember to vote these charlatans OUT OF OFFICE in the 2014 elections~
What bothers me is that women will be so focused on the Angelina-has-the-gene part that they will miss the HUGE fact that over 95% of us who get breast cancer do NOT have the faulty gene.
I was diagnosed at 37 with no family history and do not have the gene marker.
Even if you have the test and it’s clear, you are not less likely to develop breast cancer. This genetic testing is such a small piece of our health picture.
@Diamondgirl: since you didn’t mention if you are recovered or not, I wish you good health and success in your fight with breast cancer.
Two of my very dear friends were diagnosed with stage 3 breast cancer at an early age – one at 33 yrs old and one at 42 yrs old. Both are in good health right now, so we are very grateful for that. But neither of them had the gene or any family history. It was from too much estrogen in their body. I never knew about the estrogen component until I helped my friends though it. Just something for others to think about.
Shannon, how kind of you 🙂
Yes, I’m fortunate to be 15 years healthy after surgery and chemo. You’re so right – mine was estrogen-related as well.
I wish the same good results for everyone!
“Even if you have the test and it’s clear, you are not less likely to develop breast cancer. This genetic testing is such a small piece of our health picture.”
That’s not true. If you have the BRCA gene mutation you are MORE likely to get breast and ovarian cancer. So, inversely, if you do not have the mutation then you ARE less likely to get breast cancer.
That doesn’t mean you are not at risk for both cancers and should not do screenings and stay aware but your risk level is way lower.
Diamondgirl, perhaps you meant what you said differently than it reads but it’s vital for those with the pertinent personal or family history to get tested. For those with the marker nothing could be more important for them and their relatives than getting tested. For those with the marker it is advance warning of a very high risk and the chance to take preventative measures.
Simply getting regular mammograms or even bi-annual mammograms may be insufficient since this mutation often carries with it the additional risk of getting a very aggressive form of breast cancer which is not as responsive to treatment as other breast cancers.
Anyway the whole point of aggressive testing and preventative surgery is to PREVENT cancer and the debilitating ordeal of treatment and the shortened lifespan that may come with it.
Diamondgirl, I hope your recovery is behind you and that you are dong well. Best wishes to you.
All true and very well said. Anyone with a family history should be tested.
Ultimately, inherited BRCA gene mutations can be linked to ~5% of breast cancers and ~10-15% of ovarian cancers. It is pretty uncommon. As DiamondGirl said, she had no family history or marker. There are soo many other factors.
It can be difficult to find that right doctor; doctors aren’t doing too well themselves these days and many are not above prescribing you medication and tests you don’t need. There is a commercial for every drug out there. That wariness and the general distrust we have in the medical business as a whole (Myriad Genetics is a great example of this), it is not hard for some people to latch on to fear-mongering. Because Angelina put herself out there she is an easy target.
Hi, Katherine – my point is that if you do not have the gene, it does not mean you are safe from developing breast cancer. The gene is a factor in less than 5% of breast cancer cases.
Yes, with the gene you are confirmed to be at risk but without the gene, you could still be at risk and must be vigilant and proactive at any signs. Do not feel safe just because the genetic testing was clear.
Best wishes to all to stay healthy and alert 🙂
Is anyone “blaming” Michael Douglas for a sudden male increase in cancer testing???
Well, who knew that smoking, drinking, drugging, and oral sex with someone who has hpv could cause health problems? Who is AJ to bring awareness to women’s GENETIC health problems…bitch! (rolling my eyes)
AH, GoodCALL there, Celeste! I never thought of it that way, but seriously that is hilarious and kind of sad
Well, it probably had to do with doing lots of unnecessary tests. After all, unless you actually have at least one relative who has had breast cancer, it isn’t very likely that you’ll have it, now is it? And then the test would be not only completely unnecessary but you might get a false positive result and the women who are at real risk will have to wait months and months to get their tests done because of all the rest who want a test because why not and it’s expensive too! it must be necessary. Only it’s not.
It isn’t that agree with whoever bashed Jolie for sharing her story with the public; it’s wonderful that she’s raising cancer awareness and letting other women know that there are options and you can and should take your health seriously. But I can’t agree that everyone who dares to say ‘boo” to a woman is a sexist who hates us all and wants us to die an early death.
Her point about gene testing was if you have a history of cancer in your family. She has a great grandmother, grandmother mother, aunt and uncle who have all died of cancer and most of them before the age of 60. That is a very telling history. And people making the comments about HER CHOICE were more than just saying “boo”
Seriously, if women read that article and went to get a mammo, and detected breast cancer, catching it early enough to save their lives…WTF is the problem?
Do monthly self breast exams. Get a mammo, especially if you’ve got family history.
I guess I don’t get your point. Testing for the BRCA gene mutation is a way to prevent getting cancer. Even with today’s available treatments it is a HUGE ordeal to get cancer – medically, physically, emotionally, financially, career-wise, etc.
As I said upthread, those with the BRCA gene mutation are more likely candidates for a fast developing, aggressive form of breast cancer that may not be as easy to treat. It can develop so rapidly that regular and even bi-annual mammograms may not catch it in an early stage. That can be a death sentence.
The criticism of Jolie during this debate has been ridiculous and an exercise is setting up straw men. Those who criticized her for the most part seemed to have not actually read her OpEd. If they did they didn’t truly understand it.
+1
The problem isn’t about mammograms. Mammograms are very common and are typically covered by insurance.
Jolie took a gene test that costs around $3000 and is not typically covered by medical insurance. The problem is that as a celebrity she has tremendous social sway-there are women who actually listen to her and follow her example even though they don’t know her at all.
They won’t go and get a mammogram. They’ll worry about having the gene, might get a false positive (if they can afford the test), spend money they don’t have on the test-the point is that she might have caused some (stupid) women to unnecessarily panic.
95% of us do not have the gene. If women are inspired to be more careful about their breast health because of Jolie’s openness, then great. But the majority of us do not need to take this gene test. Mammograms, self exams, fantastic. No one has problems with those.
Being critical of Jolie for talking about a test that is out of reach and unnecessary for most women is not a bad thing.
A little bit on the last part of your posting: The fact that the test is costly simply sucks. But how can one know it’s unnecessary? The lack of breast cancer cases in your family might represent a clue that you don’t carry the mutated gene, but it does not represent a certainty. So it’s necessary to take the test in order to prove it was unnecessary in the first place.
In an ideal world, such test should be cheap and readily available to all women. Even if I’d have all the indications that I’d fall in the safe 95%, I’d still take it, if affordable.
Mammograms are not accurate in detecting breast cancer in women under 50. The breast tissue is too dense. I found a lump in my breast at age 29 & was sent for an ultrasound & fine needle biopsy. Thankfully both came back negative.
@ Videli/GrandPoobah: Where are you guys getting 95% don’t carry the gene? I think you’re confusing the prevalence of the gene in breast cancer patients with the prevalence of the gene in the general population.
Estimates of the prevalence of BRCA mutations in the entire population range from 1/300 to 1/1000. In other words, 99.67% – 99.9% of us don’t have a mutated gene.
@ Videli: Let’s call it’s 99.8%. One in 500 chance you have a broken gene. Would you still bother to get tested?
Remember that the gene doesn’t give you a 100% certainty of getting cancer, but pretend it does (makes the math easier). If you have breast/ovarian cancer in a first-world nation, odds are it’s treatable: 5-year survival rates are 85%. So 15% of those 1/500 will die = 1/3333 risk of death.
Lifetime odds of dying from:
Motor vehicle accident = 1/100
Falling down = 1/246
Assault by firearm = 1/325
Fire/smoke = 1/1116
Natural Forces (heat, cold, storms, quakes, etc.) = 1-in-3,357
http://www.livescience.com/3780-odds-dying.html
You have to put it in perspective. Unless you’ve got a family history, you should be more worried about whether your smoke alarm is working than about whether you have this gene. (And we need to start wrapping people in bubble-wrap because falling over is freaking dangerous!)
I agree that the test should be available to those who want it. But once you put it into perspective, there are plenty of other things people should be worrying about (and don’t).
Lucrezia, I absolutely agree with you – given the odds, other things could be more pressing. In the same vein, I would worry about living in a peaceful neighborhood, not about the breaking of World War III. But – if we circumscribe the discussion to genetic testing only, its availability, cost, accuracy, etc., I wouldn’t mind getting tested at all, if cheap and non-intrusive. If not out of worry, out of curiosity.
You are missing the point. Angelina’s OpEd went GLOBAL. Just because its $3000 in America, doesn’t mean it is in every country. Americans are not her only target audience. For example it my country the test is free if you are deemed as at risk as Angelina is. Why do people think if its $3000 in America then it is for every woman everywhere, as if America is the be all and end all? America is only one country. She reached people in a hundred to 200 countries. Not every country is like America. Universal health care is great. Some women in other countries can afford the test.
Mammograms are not entirely reliable. Years ago I got a mammo because I insisted on it after self-discovering a lump. Nothing showed on the mammo. The referring Dr told radiology where to look for it & they still couldn’t find it. Yes, it was malignant -removed, surgeries, radiation.
Years later, recurred within the scar from the first surgery. Mastectomies, chemo, etc. Insurance paid for BRCA testing & a breast MRI, more sensitive than mammography, for my 35 year old daughter.
My BRCA 2 was “irregular”. Her MRI was negative. Within 5 months, she self-discovered a lump & vigorously insisted on a biopsy. Good thing she did. It was cancer. Other than me, no family history.
We’re both well now, but continue to be alert. My daughter rigorously avoids estrogen triggers in foods & environmental substances (plastics, hormones in meat & dairy) that her kids are exposed to.
Ending the gene-test monopoly is good. So is examining your own breasts.
“I’ve read several issues bashing Angelina personally for the increased demand by women for cancer screenings and genetic testing. Like, women taking their health risks seriously and wanting to be tested for the BRCA genes are somehow a BAD thing.”
I interpreted the few follow-up articles that I personally came across not so much as “bashing” Jolie, but as expressing overall concern that a statement issued by a high-profile celebrity like her could potentially sway women into thinking that taking extreme preventive measures would be the yellow brick road to warding off female cancers. No, Jolie did not say, “My choice is the best choice–for everyone.” But … not everyone is a logical thinker, not every medical practitioner is totally ethical, and celebrity culture (especially in this day and age?) obviously has tremendous pull on people’s opinions, convictions, and decision-making. I believe Lauren Hutton was the spokeswoman for HRT about a decade ago, and a lesser example is Sally Field, who was the Boniva “postergirl” just a few years back (both of these women were paid to endorse, I think). Obviously, the celebrity of neither can be compared to Jolie’s. But, as just a minor example–though isolated–of the influence even they can wield, after much deliberation, a handful of people in a former coworker’s social circle were finally persuaded to start taking Boniva. What sold them on it? They liked, related to, and “trusted” Sally Field. I won’t comment on these people’s critical-thinking skills or the quality of their doctors’ counsel. And again, it’s an isolated example. I’m just offering a case in point regarding celebrity pull, which is what I think some of the follow-ups to Jolie’s op-ed (that I saw, at least) were getting at.
Well the articles I saw said she made a bad or wrong decision in having her breast removed.They said she could have gotten mammograms every three months and or taken tamoxiphen.So implying a woman with her family history made the wrong decision is bashing her. IMO.
Mammograms are not reliable enough for anyone in AJ’s situation.
Tamoxiphen has many negative side effects and benefits only 1-2 % of the women who take it, even though it is widely & routinely prescribed post-CA.
Meh, it isn’t her fault that some patients/doctors are illogical. She was very clear about doing the testing because of a very strong family risk. If the public assumes that they can’t possibly get cancer because they don’t have the gene, or go nutters and demand the tests despite having no obvious risk factors, such as a family history, that isn’t her fault. Unfortunately, she can’t weed out access to her story and only get the message out to the people who will take it with the intended spirit. I know you’re not blaming her; i just don’t see any way she could try to raise testing awareness to people who may benefit most from it without picking up some others along the way.
I think it’s probably a good decision. I hope so. On the other hand, it might encourage the invention of manmade “genes” that are just different enough to be patented? Or am I way off base here?
Don’t see anything politically libertarian about it all though. Maybe I’m behind the times.
Love Angelina.
No, there are no such things as man made genes. Thank heavens!
Wait .. what? There certainly are man-made genes. Have you never heard of genetically modified (GM) food?
This ruling means you can’t patent genetic combinations that already occur in nature (such as the BRCA gene and its all its mutations). But Monsanto’s patents on all their GM crops still stand, because those genes never naturally occurred in those plants. (It counts as “man-made” if you take a naturally occurring corn gene and shove it in a tomato.) Patents on other “unnatural” things like glow-in-the-dark kitties would also still stand.
However, d b: There isn’t going to be a rush to make GM BRCA genes (you’re so far off base you’re not even in the car-park :P) The whole point of BRCA testing is to find out what kind of BRCA genes you have (normal/working or mutated/broken). Regardless of whether they work or not – if you have it, it’s naturally occurring. Genetically engineering a BRCA gene that doesn’t already occur in nature would help testing … how???
Now if someone works out how to fix mutated BRCA genes, (turning them into normal BRCA genes) then that’s a totally different kettle of fish. But that process would still be patentable (even though the gene itself isn’t).
“Don’t see anything politically libertarian about it all though. Maybe I’m behind the times.”
I read the statement the first time that way too. She says “civil libertarian” which is unrelated to the party of small government fanatics (i.e. libertarian).
Ah, understand. Thanks 🙂
Well, depends on how you interpret articles that supposedly “bashed” Jolie. I don’t think it’s as much Jolie-bashing as it is about deliberation, which sadly is shrinking in today’s world. People like to take sides and stick to their sides, and different viewpoints aren’t even listened to anymore. They are just judged and in this case it is Jolie-bashing. A celebrity like Jolie will influence women on a substantial scale and that she may have triggered a panic among women was the issue raised by some of the articles. I read a news article in the Times of India that there was a massive increase in the number of women calling to check on preventive measures in Bangalore after Jolie’s announcement. Now that’s some geographical reach and influence a celebrity like Jolie has. Sure she has raised awareness about gene testing and the BRCA1 and BRCA2 genes. That’s one part of the debate. The other part is that she may have triggered unwanted anxiety among women because let’s face it, celebrities have social power.
there aren’t words to describe the contemptible money-grubbing pigs who comprise myriad execs and the lawyers who were intent on controlling this test.
It really wasn’t quite that black and white. I think the Court’s ruling is mostly correct but I hope it doesn’t deter companies and labs from investing the money necessary for research and development.
The money for R&D has to come from somewhere. Companies invest hundreds of millions of dollars into it and they need some way to ensure they can recoup it or they won’t bother. A limited patent on their work gives them the chance to recoup their investment – for example, Myriad’s applicable patent was due to expire in 2014 or 2015.
So while I generally applaud the Court’s decision, I am concerned about its effects on pharmacologic R&D in general, especially for orphan diseases and drugs – those which affect a small percentage of the population such as those with the BRCA gene mutations.
I read that Mary-Claire King, the geneticist who discovered the BRCA1 and BRCA2 genes, says she is delighted by the U.S. Supreme Court ruling but I strongly suspect that had she gotten to the patent office first she and her lab would have been the patent holders themselves.
Now perhaps they would have handled their patent differently and allowed research to continue unfettered – unlike Myriad – but they may have felt compelled to act similarly to protect their patent as Myriad did. Or they may have licensed the ability to do research and profited by a share of others’ rsearch then they would have been the ones being called evil and avaricious.
Nothing is as simple as it seeems.
nih is actually a huge funding source for r&d; and there were reports that within days, the court’s ruling had a huge impact on the cost of that test dropping with other sources now able to go on market.
Unfortunately, the NIH is not a huge funder of anything. They do give funds for orphan drugs from time to time, but the principal investigator must spend all of his/her time writing for grants instead of in the lab where he or she could do some actual research. It’s very frustrating. I worked with the parasite that causes African Sleeping Sickness – something that only people with absolutely no money get. And it is 100% brutally lethal. But we lost out on half of our funding due to the loss of a collaboration, and that was that. Very upsetting.
The thing is that having the gene is not 100% same as getting the cancer. It increases the risk but the majority of cancer cases are WITHOUT the “faulty” gene and many who have the gene don’t necessarily get the cancer at all. There are other things that matter as well. The information should be full information and not just hystery around the media, which it is currently.
I hope women are really smarter and just chill with things. In my country for example having a gene test done by health care professionals require a proof of having cancer running in family. And honestly I think by then one should be aware of the risks…
I’m really glad AJ brought awareness to this issue. I honestly had no flippin idea that it was possible to test your likeliness of developing breast or ovarian cancer. One of my cousins survived cervical cancer when she was in her mid 20’s, and my grandfather died of cancer. I don’t know if 2 people means it runs in my family, but considering I’ve had problems with my reproductive organs since my mid teens, I’ll definitely be looking into these tests. However, I never would’ve known these tests were options, but I do now.
Also, screw the company trying to patent this. They have NO RIGHT! How dare they try to put a huge price tag on a women’s lives! (Because you all know that’s what would’ve happened). Makes me sick!
A BRCA mutation wouldn’t cause problems with your reproductive system (it’s linked to cancer, but not random non-cancer problems). Cervical cancer isn’t related at all. I’m assuming your grandfather didn’t have ovarian cancer (if he did, your family tree has problems :P). So unless your grandfather had breast-cancer (you didn’t specify), you have absolutely no family history of breast/ovarian cancer, so you almost certainly don’t have a BRCA mutation. Relax.
However, only 5-10% of breast/ovarian cancer is caused by a faulty BRCA gene … so even though I’m 98% sure you don’t have the faulty gene, that doesn’t mean you won’t get breast/ovarian cancer. Just means you have a normal chance of getting it.
Does that make sense? The test doesn’t tell your overall chance of getting breast/ovarian cancer, it will only tell you if you have an elevated risk or a normal risk.
Certainly get tested if you want to, but you don’t sound high-risk.
Actually, there is a link between breast & colon cancers.
Off topic but she is beautiful. Her grey-green eyes are nice.
HOW ON EARTH DID ANYONE EVER MAKE ENOUGH OF A CASE FOR THIS THAT IT WOULD GET TO THE SUPREME COURT?!
Trying to patent genes? Pardon my language but that is just f*cking disgusting.
WORD
Er … Myriad got the first of their BRCA patents in 1994. (They would’ve started naturally expiring in next year!)
And about 20% of identified human genes are under patent. (Admittedly some of those patents are held by research groups that choose not to enforce their patent: they basically just patented it to stop big companies from doing so.)
I agree that patenting genes is dumb, but the surprise isn’t that someone tried to patent a gene, the surprise is that the Supreme Court has finally said you can’t do that.
The timing of her announcement was no accident. Angelina is in many ways – as Michael k says- a saint. Bc she understands her power and uses it sagely and for good. I really really respect her and am so grateful for her commitment to GOOD and RIGHT and JUSTICE for humanity. There are so many celebs – and kids of celebs (as she is) to boot- who are lazy, ungrateful, entitled, narcissistic or just ignorant. She has risen above all The BS and ace a choice to follow through every day in every way with her commitments. It’s astounding and humbling. And it only adds to her beauty and power.
As an-insured (but -uninsured for years) woman with cancer on both sides of my gene pool I can attest to the absolute importance that some company nt dictate my worth vis a vis generic testing. It’s bad enough Monsanto does that with seeds. Our food is a huge problem.
As the old pro-choice quote goes: KEEP YOUR LAWS OFF MY BODY!!!
A saint… Really?
I said “in many ways” and was quoting Michael k so it was a bit hyperbolic but I then went on to elaborate on why I think she’s great. You got hung up on the word saint and skipped the rest? Or missed the point? That’s fine but I think as always I made it clear I was expressing MY OPINION. So if that’s all you got then have a nice day and let’s not get into semantics.
Michael k is mocking her when he calls her a saint. He doesn’t like her. Its why I never read his articles. Only the haters refer to her as a ‘saint’, because they think she pretends to be a saint. Its a negative connotation and thats why only haters refer to her as that.
I wasn’t even aware of BRCA genes before her, I thought breast cancer was just a matter of checking for lumps on a consistent basis. I’m guessing it’s the same for most women, so I’m really glad she made this a topical issue and raised awareness.
And I’m glad the Supreme court threw out that case! It’s ridiculous. So if I don’t happen to live near one of their clinics and can’t afford to fly halfway across the world, I don’t deserve to get myself checked?
How many hundreds of dollars does she have? An estimate anyone? She could set up a charity which provides funding to women wanting these tests now that she has made everyone aware of it. Awareness is fine but if there is no actual action available, it is essentially useless.
Some insurance companies pay for the testing. It’s based on family history & physician request.
For some reason my previous post didn’t show up. It might have been because it had a link in it, i don’t know.
Anyway, @janet people have legitimate reasons to dislike aj. I do think that what she did for breast cancer awareness was good, but the woman is either really stupid or a sadist. Everyone who thinks she does good work should look into what is actually happening internationally and see that she continually praises/promotes the deaths of innocent people. And since she’s alligned herself with the un people in america are generally unaware of what she, the un and nato are actually doing. (i’ve never been to america but if forums where americans comment is an indication of anything, then the us media has been twisting things so much that what is actually happening internationally and what us citizens think is happening couldn’t be more different.)
I used to be a fan of her, but a few years ago i decided to do more indepth research into what was happening internationally and now see what she is actually promoting. For anyone who reads this please do some research. I know that a lot of people who criticise her use awful language (i assume it’s because they’re emotional about innocent people being slaughtered), but it doesn’t change the fact that they’re right about her.
And just to clear things up, i have no opinions of jennifer aniston.
What research would that be? Anti-UN conspiracy theories from crackpot sites? I advise you not to believe everything you read from your research. There is no valid information against the UN, only crackpot lies and false claims with conspiracy theories up the wazoo. Re-do your research.
Nope! It was visiting a country where people were countless people were murdered by nato. You shouldn’t listen to americas biased media.
Nope! It was visiting a country where countless people were killed by NATO. You shouldn’t listen to america’s extremely biased media!
I’m up for sharing information and learning from eachother, but dismissing something that you personally have never seen is wrong in my opinion.
Considering that you can get your entire genome sequenced today for about $6,000+ it was fairly obvious that the $3,000 that they were charging to test for one gene was excessive in the extreme.
Amen! Viagra is covered by insurance but testing for the BCRA gene and subsequent surgeries if needed arent?! Arent we in the 21st century people?! Disgusting!
I am so happy the supreme court ruled the way it did. I got tested for a different gene mutation and I have it from both parents. I am able to afford testing. I know so many women who are not. Which makes me ill. The difference in the testing I had done will not only allow me to live longer but my quality of life will be better. I might be able to have a baby now. I start treatment tomorrow. At first I was upset with knowledge I now have but my husband & Dr. said it is better to know. I am ok with it now and beyond grateful I have the $$$ to get proper treatment. I love that Angie brought this to the forefront. I am glad she commented !!
Please watch the video “Glass Walls” with a very important message from Paul McCartney