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There has been a major firestorm the last 48 hours regarding the overtly political decision of the Susan G. Komen Foundation to stop providing funding to Planned Parenthood.  The reason, they claim, is that Planned Parenthood is under investigation in Congress — a probe launched by a conservative Republican who was urged to act by anti-abortion groups.  Of course, some great journalism by Jeremy Goldberg of The Atlantic, highlighted by our own TomP, says that Komen changed their internal policy of not funding organizations under investigation by Congress after the investigation was initiated.

In other words, according to above piece, the Komen Foundation saw an opportunity to stop giving funds to Planned Parenthood based on the Congressional investigation and amended their internal policy accordingly.  The cart before the horse, indeed.

Perhaps surprisingly for the Komen Foundation, the backlash against the organization has been stunning - and not only from political activists like ourselves.  The responses have gone viral, and hopefully they will start to "pull back the pink curtain", as Daily Kos and activist Betty Pinson so appropriately stated.  In her remarkable diary, "Behind the Pink Curtain - Komen's Political Agenda", Betty documented a truly sobering history of the Komen Foundation.  for over a decade, they have been working behind the scenes to block several pieces of legislature that would actually help women in the fight against breast and cervical cancer.

Most shockingly, lobbyists for Komen actually argued "that treatment for uninsured breast cancer patients should be funded through private donations," like (of course...) the pink ribbon race.  For Komen, it makes perfect cents (pun definitely intended).  When you are a charity that, as of 2009-2010, spends only 24% of your funding on research (warning - PDF), the more pink ribbon races you have, the more pink ribbons and Kitchen Aid mixers and other overtly commercialized products you have, the more money for your CEO's $500K salary.  For the Komen's corporate sponsors, Pink is the new Green.

However, perhaps adding another level of shock to you all, there is another dark side in regard to the commercialization of breast cancer that has gone unreported.  Follow me below the fold to get the story.

Many of you have likely at least heard the term "BRCA" (pronounced "bra-ca") before.  You may even know that it's the nomenclature for the gene that when mutated is highly linked to incidents of breast cancer.  But what you likely are not aware of is that the BRCA gene has been the subject of a legal battle for the last 17 years, and all because of one company - Myriad Genetics.

First, a history lesson behind the discovery of the BRCA1 / BRCA2 mutations that lead to breast cancer (There are two forms of BRCA that are both implicated in breast cancer, among others).  BRCA1 was first associated via linkage analysis with high incidences of breast cancer in 1991 by scientists at the University of California - Berkeley.  As a reference, this was a time when genetic sequencing - taken for granted today - was extremely difficult, time consuming, and expensive.  A year earlier in 1990, a separate group of scientists lead by geneticist Dr. Mark Skolnick, who had done early linkage studies on Mormons, founded Myriad Genetics.  Their mission was to use Dr. Skolnick's expertise on linkage to identify and clone genes for eventual commercial purposes.  Myriad Genetics first focused on the newly-implicated BRCA1 gene, and in 1994 had successfully cloned the gene, in the process creating an isolation and detection method - essentially, an early form of genetic screening.

But rather than share this technique with the research and medical community, Myriad Genetics saw a very lucrative opportunity to profit off of their cloned BRCA1 gene.  The company filed for a patent in 1994, and was granted one in 1997.

Meanwhile, work from Dr. Michael Stratton and colleagues had published (access required) work on the discovery of a second breast cancer susceptibility gene, appropriately named BRCA2.  Myriad Genetics sequenced this new gene and filed for a patent in 1995; it was granted in 1998.

Since the initial discovery of the BRCA1 / BRCA2 genes, much additional research has been conducted demonstrating their significant contribution to breast cancer incidents.  For women harboring mutations in either gene, the prognosis is very poor.  For a 25 year old woman, survival to age 70 is only 53% with a mutant copy of BRCA1, and only 71% with a mutant copy of BRCA2, compared to 84% for unaffected women.  Of women harboring a BRCA1 or BRCA2 mutation, 77/100 and 56/100 will die from breast or ovarian cancer, respectively.  This is compared to only 11/100 for unaffected women.

The research has been done, and the results are clear - if you are a woman who has either a mutant copy of BRCA1 or BRCA2, your likelihood of getting breast cancer is extremely high, and if untreated, you will likely die.

Thankfully, with aggressive preventative screenings and other intensive medical care, women with a mutant copy of BRCA1 or BRCA2 can extend their lifespan.

Of course, the critical piece of information is knowing whether you have a mutation in BRCA1 or BRCA2 in the first place.  This is where Myriad Genetics and their patents come into play.  If you have had breast cancer yourself or have a direct relative (parent/grandparent) who has had breast cancer, you likely already know what I'm going to say.  You see, Myriad Genetic's patents don't just cover the isolation and sequencing technique of the BRCA1 and BRCA2 gene - they are patents of the genes themselves.  Which means that any screening test that sequences and checks for mutations in your copies of BRCA1 and BRCA2 owes royalties to Myriad Genetics.  And according to cancer.gov, that can cost anywhere between several hundred to thousand dollars for each test (and two genes means two tests).  And as expected in the war on women from health insurance companies, your test may not be covered.  Don't take my word for it, it's information provided in the same cancer.gov link I provided just above.

So let's recap what we have here and the potential consequences for women's health.  You have a disease which is widely known as the second biggest killer of women (after heart disease).  You have two known genes in BRCA1 and BRCA2 that if mutated are a known death sentence for the affected patient.  And you have a company in Myriad Genetics that continues to claim royalties in the thousands of dollars for every single screening test performed, even though in the year 2012 it costs maybe $100 at most to screen for both genes.  In fact, it's probably WAY less than $100, considering Life Technologies just released a machine that can sequence the entire human genome in one day for just $1000.  30,000 genes for $1000.  If I haven't convinced you that a cost of thousands of dollars for sequencing two genes isn't extortion, then you have no hope.

A consistent friend of progressive causes agreed.  The ACLU filed suit in 2009 against Myriad Genetics for its patents of the BRCA1 and BRCA2 genes, arguing that biological components in their natural form should not be patentable.  From ACLU Executive Director Anthony D. Romero:

"Knowledge about our own bodies and the ability to make decisions about our health care are some of our most personal and fundamental rights.  The government should not be granting private entities control over something as personal and basic to who we are as our genes."

The court agreed in the ACLU's favor in a 2010 decision.  Federal Judge Robert W. Sweet stated:

"DNA's existence in an 'isolated' form alters neither this fundamental quality of DNA as it exists in the body nor the information it encodes. Therefore, the patents at issue directed to 'isolated DNA' containing sequences found in nature are unsustainable as a matter of law and are deemed unpatentable under 35 U.S.C. §101."

Of course, Myriad Genetics appealed, and unfortunately won in a July 29, 2011 ruling from the Federal Circuit court.  The case was heard by federal judge Randall R. Rader.

The ACLU is currently appealing the Federal Circuit court's decision to the US Supreme Court on December 7, 2011.

Update - The below information is correct about Judge Rader, so I don't want to strikethrough the text, but it is non-applicable to this diary anymore thanks to the correction provided by user Villanova Rhodes.

It may also not surprise you that Judge Rader served as a legislative assistant to the odious Rep. Virginia Smith and was first appointed to a federal court position by President Reagan.  Here is a prime example of extending corporate ownership over our bodies, a theme that was brought to national attention two years ago in the book "The Immortal Life of Henrietta Lacks" (which, if you haven't read, you totally should).

So as of now, Myriad Genetics' patents for BRCA1 and BRCA2 are valid and costing hundreds of thousands of women millions of dollars in unnecessary medical costs, not to mention setting a horrifying trend of having something as innate to life - our genes - be patentable.  I don't have much faith in the Supreme Court to rule on the side of women, science, and medicine, but one can hope.

I hope this diary has provided you with some knowledge about the oft unmentioned side of the commercialization of breast cancer (and our bodies in general).  I figure no better time then the ongoing (and rightful) firestorm against the Susan G. Komen Foundation to help get this information more widely available.

And as a final request, if you really want to help cure breast cancer (or all cancers, for that matter), instead of buying pink stuff, you should 1) donate to Planned Parenthood, and most importantly, 2) donate to and advocate for Congresspeople who will fully fund the NIH.

Update - Feb 3, 2012 - 3:02PM - Thanks to a comment from user Villanova Rhodes; my information that Judge Rader presided over the ACLU's victory being overturned is wrong.  I had 15 tabs open while writing this (to have all my sources set), and I saw his name in there somewhere, but after checking out the actual court ruling, I see that I published wrong information.  Sorry for that - I'll do a better job cross-checking everything before publishing next time.

Originally posted to mconvente on Thu Feb 02, 2012 at 02:01 PM PST.

Also republished by Science Matters.

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Comment Preferences

  •  Quite an ugly trail you had to follow there (8+ / 0-)

    Wow. That they can charge you to see if you have the gene makes my mind reel. I can sort of deal with them patenting a gene that they use to make a medicine. I know this isn't really possible but say they took that gene and used it in some retroviral compound that attacked the tumors BRCA1 caused. That would be something. But it feels extremely creepy to me they may "own" part of the genes in my wife or daughter just because they say they do. On the positive side, their patent has nearly expired and when it does I hope they get undercut massively and go bankrupt.

    "What profit a man, if he gain the world, but has to pay taxes on it?" Paul 8:36

    From the Gospel of St. Ron Paul in the Teachings and Misunderstandings of the Words of Adam Smith

    by ontheleftcoast on Thu Feb 02, 2012 at 02:13:39 PM PST

    •  Yeah, it's really ugly indeed (7+ / 0-)

      I'm not even ok with patenting the process to clone a gene - that would halt all efforts to find genes.  Though, given the fact that almost all of them have been identified and cloned already (at least for humans and major model organisms), I suppose that really isn't a problem anymore.

      I'm actually ok with charging for a genetic screen test - they do in fact cost money.  But definitely not thousands of dollars.  Once you have the sequencing instrument, it would cost literally $25-50 for all the As, Ts, Cs, and Gs need to sequence the gene.  Add in technician cost and overhead, triple that.  Not cheap, but definitely not several thousand dollars...

      However, you're second point is definitely concerning.  Sure, the BRCA1 and BRCA2 patents are almost out, but the principle of patenting genes is (as of now) still in.  And Myriad Genetics has patents for a slew of other genes as well.  That is where the problem lies, and I don't have much faith in the Supreme Court to put a stop to it...

      "Give me a lever long enough... and I shall move the world." - Archimedes

      by mconvente on Thu Feb 02, 2012 at 02:20:38 PM PST

      [ Parent ]

  •  tipped and rec'd (9+ / 0-)

    you are so right.  i have to listen to suits natter on about gross margin and quarterly profit and all this crap for my work.  so the biomed firms get on there and start saying things like "market share in oncology" or celebrating growth predicated on a captive market that literally needs what they're peddling to survive.  

    it's really sickening.

    My goal is to make the world safe for anarchy. - 4Freedom

    by Cedwyn on Thu Feb 02, 2012 at 02:32:03 PM PST

  •  Also tipped and rec'd. Thank you. (4+ / 0-)

    At some point one would like to think the good of humanity would cross the minds of some of these folks.

    And how much public money went into isolating those genes? Myraid should at least be paying a stipend to U.C. Berkeley for its work.

    Please Vote for the Democratic nominee for President in 2012.

    by mungley on Thu Feb 02, 2012 at 02:47:39 PM PST

  •  Wow, this needs to be more widely understood (2+ / 0-)
    Recommended by:
    Clio2, mconvente

    Thanks and keep on writing.

    Congressional elections have consequences!

    by Cordyc on Thu Feb 02, 2012 at 04:35:54 PM PST

  •  Good diary (5+ / 0-)

    Komen has worked closely with Myriad Genetics over the years and not always in a constructive way.

    A few years ago, Komen tried to get a bill passed in Congress that would promote and fund genetic testing for a wide array of healthy women, with a particular focus on young, even pre teen women and African Americans.  There was no mention of the fact that the BRCA 1 & BRCA 2 genetic mutations are very rare.  Its not the kind of test that most docs routinely recommend to healthy women.  

    It was a very controversial bill and many experts questioned Myriad's involvement in backing it.  There are many issues regarding medical privacy and future possibility of discrimination against women who test positive, or even women who've had the test, regardless of the results.  The current laws on the books that are supposed to prevent genetic discrimination are weak with little or no real enforcement provisions for patients and their family members who face potential discrimination on the job or elsewhere.

    "I'll believe corporations are people when Texas executes one."

    by Betty Pinson on Thu Feb 02, 2012 at 07:17:17 PM PST

    •  Thanks for the comments (2+ / 0-)
      Recommended by:
      Betty Pinson, cocinero

      Coming from you, a long time Kossack and with a superb diary yourself on the Komen Foundation, your praise plus tip are greatly appreciated.

      Yes, even though having a mutant copy of BRCA1 or BRCA2 is a ticking timebomb for getting breast or ovarian cancer, the frequency of mutant copies among women is still very low, and even still only 5-10% of breast cancers arise from these mutations.  Another major one cause are Her2/neu mutations, and here at Penn we have one really great research lab that has developed a cancer vaccine against the mutant form of this protein.

      In any event, yes, pushing for BRCA1/BRCA2 screening for women who don't currently have breast cancer or have a family history of breast cancer is quite misguided.  But nonetheless expected from a company that makes thousands in royalties per screening test.

      And finally, this upcoming era of personalized genomics and medicine is going to be quite a brave new world, and I'm saying that even as a research scientist.  It may be very beneficial for some patients, but its scope will be quite limited for the near and far future, since we don't really have a good grasp on molecular interactions at a scale needed to use that information for personalize medicine.  We know a lot, but there's still tons to discover before every single mutation can be understood in its effect in disease pathology, and not just for cancer.

      "Give me a lever long enough... and I shall move the world." - Archimedes

      by mconvente on Thu Feb 02, 2012 at 08:49:36 PM PST

      [ Parent ]

      •  I've heard about your work (2+ / 0-)
        Recommended by:
        mconvente, cocinero

        Great job!

        There's a great deal of promise in the area of immunology, for both treatment and as a prophylactic vaccine.  I'm also excited about the promising work in epigenomics and understanding how to prevent metastasis.

        I'm also encouraged that the research community is finally beginning to focus on trying to understand triple neg and basal type breast cancers, as well as inflammatory bc. We're finally learning so much more about how these cancer types work.

        One of the heartbreaking aspects of BRCA1 &2 testing has been, once confirmed, what options does the patient have? Watchful waiting, prophylactic mastectomy or limited benefits of chemoprevention.  

  •  Rader? (1+ / 0-)
    Recommended by:
    mconvente

    Thanks for the informative diary. One question, though: The opinion I see for that case on that day was issued by a three-judge panel that did not include Judge Rader. Was there a related case? Where did the Rader info come from?

    •  Crap, I see I messed up there (1+ / 0-)
      Recommended by:
      Villanova Rhodes

      I wrote this fairly quickly, I had like 15 tabs open with sources, thought I had one with that cited.  But I now checked the actual court decision and you are 100% correct.  Very sorry for the inaccurate info there, I have edited the diary to report this.

      Thanks for the comment.

      "Give me a lever long enough... and I shall move the world." - Archimedes

      by mconvente on Fri Feb 03, 2012 at 12:01:38 PM PST

      [ Parent ]

  •  Interesting stuff (2+ / 0-)
    Recommended by:
    mconvente, cocinero

    I am pretty well up on the science (and even have worked with HeLa cells, so know the story, and false stories, about Henrietta Lacks) but didn't know about the legal stuff.

    FREEDOM ISN'T FREE: That's why we pay taxes. I Had A Thought

    by mole333 on Fri Feb 03, 2012 at 11:48:54 AM PST

  •  How come the ownership of a gene can't be used (0+ / 0-)

    to work in the woman's favor?

    If I owned a dog that ran around the neighborhood and bit people, or even killed some,  I know I wouild very likely be sued in civil court, at the least, for damages and what not, and probably have some criminal charges lodged against me as well.  As a dog owner, I am obligated to keep it under complete control at all times -- either by having it trained or properly restrained or muzzled.

    If these guys 'own' this gene, then why could they not be sued for it running around women's bodies causing mayhem and death?  Seems like they want all the benefits of 'owning' the gene,  but none of the responsibilities and obligations of ownership.

    Seems to me that, until that gene is under the total control of its owners, it ought to be taken away from them and put in public safekeeping until it can be tamed.
    Can't we sue them for the damage the gene they own causes?  

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