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Because our lawsuit challenges the whole notion of gene patenting, this decision could have far-reaching effects beyond the BRCA genes. Approximately 20 percent of all human genes have been patented, including genes associated with Alzheimer's disease, muscular dystrophy, colon cancer, asthma, and many other illnesses. ~ACLU

Please watch - In the vid below, science writer, Kris Newby, and Merrill Goozner, former Director, Center for Science in the Public Interest illustrate why patenting the Borellia bergdorferi organism has led to patients infected with Lyme disease not getting diagnosis and treatment for their disease:

If it is upheld, the Myriad decision will impact many of our lives, especially those of us who may not know why we are sick or whether we are likely to become so and should take special care of ourselves.

The resolution of these motions is based upon long recognized principles of molecular biology and genetics: DNA represents the physical embodiment of biological information, distinct in its essential characteristics from any other chemical found in nature. It is concluded that 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 subject matter under 35 U.S.C. § 101.

~U.S. District Judge Robert Sweet

Please click if you have not yet read RenderQT's diary yesterday.  New York Times article: Judge In New York Dismisses Human Gene Patent.

What was not not mentioned in RenderQT's diary was that the ACLU argued this case for the Plaintiffs along with Public Patent Foundation.  I only happen to know about ACLU involvement because last year I was booking guests for a progressive radio show, and we frequently had guests from the ACLU to talk about their cases on torture, so I remain on the press release email list and have been aware of developments in the case over the past year.

Liberate Breast Cancer Gene

More on the Breast Cancer gene case follows after discussion of how this relates to patents on the Lyme disease bacterium, Borrelia bergdorferi.

* * *

I hope you watched the video in the intro - it's taken from the film, Under Our Skin which was a semifinalist for Oscar contention this year in the Documentary category (shameless plug:  the film has applied to be part of the NN10 film series, am very much hoping it will be screened in full).

2008 is the latest year for which the CDC has statistics about reported cases of Lyme disease in the U.S.  The confirmed number of cases is just shy of 29,000 and they report another 6,000 suspected cases.  But CDC has long noted that the verified number of Lyme cases may only be 10% of the actual number of annual infections - their tracking is epidemiological estimates and is not definitive as to the actual number of infections.  If you click the link, you'll note that this number for 2008 is 3x the rate recorded in 1994.

Please read that again if the numbers didn't sink in:  
There are nearly TWENTY-NINE THOUSAND confirmed infections of Lyme disease annually in the U.S., and it is believed to be a tiny fraction of those infections.

All's well if one gets the tell-tale bullseye rash at the time of tickbite so that antibiotics can be given immediately.  There is consensus that immediate treatment can stop the infection from taking hold.  Unfortunately, the guess is that only about 60% of bites result in the rash, so patients and doctors do not know treatment is required.  For many, it can be years of bizarre neurological, cardiac or arthritic symptoms before they get diagnosed and treated.

Erythema migrans, Lyme disease

Some of you know that in the aftermath of an accident which caused me to lose more than half my blood volume, I became disabled by Lyme disease which went undiagnosed (and hence untreated) for five years in spite of my being seen by literally twenty-four doctors (most of whom were at a nationally ranked university hospital in Southern Califonia) before a physician finally recognized my neurological symptoms as likely being those of Lyme disease and tested me for it.  I'll be the first to admit that I'm crazy, but there's been a bug in my brain and central nervous system, people.  It's been an enormous struggle to figure out what was wrong and find someone willing to treat it.

Because some will ask, my doctors conjecture that I was actually infected in the early 1990s (long story to explain the medical evidence from that time period, but I was in a much more highly endemic area than Southern California), and that my immune system kept the infection in check until it was overtaxed in the aftermath of massive (hospital's adjective, not mine) hemorrhaging.

Many here have read my assertions that whether and how patients get the diagnosis and treatment they require can be highly political because of the economics involved.  The breast cancer decision screams about economic interests trumping sick patients because of politically and legislatively bestowed gifts to industry.  

With Lyme disease, the politics are a bit different than in human breast cancer gene patenting, but they are similarly driven by finacial interests (and other conflicts of interest) mentioned above, based on potential economic losses and gains to both patent-holders and the insurance industry.

Thank goodness we have checks and balances in this country to help us attempt to level the playing field for those who are disempowered.

For more information on Lyme disease issues for patients, please see the LymeDiseaseAwareness series from last May, from which at least two Kossacks recognized their own symptoms and had tests confirming that their mystery ailments were, in fact Lyme disease.

Also see information from ILADS, International Lyme And Associated Diseases Society and CALDA, California Lyme Disease Association (and their blogs).

The LymeDiseaseAwareness series will return this May for Lyme Disease Awareness month.

* * * *

More on the Breast Cancer Gene Case

You can read ACLU's information on the Myriad case here (ACLU Challenges Patents On Breast Cancer Genes: BRCA - case documents links are found on this page) and here (Who Owns Your Genes? You Do).  There's a terrific primer on genes here.

Sign a message of support for the plaintiffs in the Myriad case.

I hadn't noticed the ACLU slogan previously - think it's a good one:
The ACLU is our nation's guardian of liberty, working daily in courts, legislatures and communities to defend and preserve the individual rights and liberties that the Constitution and laws of the United States guarantee everyone.

In case you are inspired to join the ACLU, consider becoming a card-carrying member... it pisses the Tea Partiers off.  ;-)

Originally posted to MsGrin on Wed Mar 31, 2010 at 03:30 PM PDT.

Poll

Could the politics of financial interest impact whether you and your loved ones access medical diagnosis & treatment?

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Comment Preferences

  •  Tips for access to needed testing and treatment (16+ / 0-)

    May all patients receive the care they need.  Blessings.

    "Trust me, after taxes, a million dollars is not a lot of money." --Michael Steele

    by MsGrin on Wed Mar 31, 2010 at 07:45:07 AM PDT

    •  My dear, (1+ / 0-)
      Recommended by:
      MsGrin

      check your Facebook link, you've got somebody over there who would like your permission to repost.

      It has been said that man is a rational animal. All my life I have been searching for evidence which could support this.--- Bertrand Russell

      by triv33 on Wed Mar 31, 2010 at 04:46:52 PM PDT

      [ Parent ]

  •  The ACLU is the (9+ / 0-)

    one thing I am still a card carrying, dues paying member of. There are no huge corporate donors to steer the agenda there, just their original and continuing mission and, yeah, the fact that it pisses the wingers off is an extra added bonus.

    It has been said that man is a rational animal. All my life I have been searching for evidence which could support this.--- Bertrand Russell

    by triv33 on Wed Mar 31, 2010 at 03:43:58 PM PDT

  •  Very good diary (4+ / 0-)

    and your little dog too

    by chicago minx on Wed Mar 31, 2010 at 03:53:17 PM PDT

  •  One begins (6+ / 0-)

    to see the difficulty with totally free markets. We can't have markets without commodities to sell. So in a pure market economy everything must be made into a commodity. This includes genes. But if people believe they can have freedom only within the limits of a market economy and they value freedom above all else they will accept the necessity of genes being patented. Now one sees the genius, for corporations, of being able to convince millions of people any alternative to a pure free market is "socialism."

  •  This is an important decision (5+ / 0-)

    Patenting genes is patent nonsense. They're simply a part of nature, and claiming ownership of them in any veers beyond standard corporate amorality into truly serious immorality. Securing long-term payment to the first person to "discover" what's already there – not a medical application of said gene, but merely characterization of its makeup and nature – is like saying the first person to see an island or mountain not only gets to name it, but owns it.

    While explorers historically may have planted flags and claimed ownership, nature itself is blithely oblivious to such hubris. We shouldn't allow any individual or business to pretend they have a proprietary right to something so fundamental. Yes, it's a lot of work to both find and uncover the function of genes, and there may not be a bright line between that work and medical applications from it. But the alternative is absurd on its face.

    It is concluded that 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.

    Sweet, sweet reason. Of course this decision won't be allowed to stand; too much money at stake.

  •  Well, well, well... (3+ / 0-)

    looks like there's a patent application in for the FMR1 gene. The "fragile x syndrome" gene. Now, why am I not surprised?

    It has been said that man is a rational animal. All my life I have been searching for evidence which could support this.--- Bertrand Russell

    by triv33 on Wed Mar 31, 2010 at 04:03:19 PM PDT

  •  If these companies "own" the DNA of my disease (18+ / 0-)

    Shouldn't I be able to sue them for letting it infect me?

    "Grab a mop -- let's get to work. "
    -- President Barack Obama, Oct 2009

    by davewill on Wed Mar 31, 2010 at 04:06:34 PM PDT

  •  It is incontrovertibly true that companies that (5+ / 0-)

    develop "molecular diagnostics" won't bother to develop new, more affordable diagnostics for diseases if their new technique will infringe anybody else's molecular patent.

    Reason #1: The other company -- which is probably a competitor -- will charge an arm and a leg for licensing.

    Reason #2: It's generally considered an infringement to even try, since you generally have to use techniques that violate the patents in order to develop your new test.

    Note the difference between this state of affairs and the way things work in the automotive industry. The car companies have a bajillion patents, most of which they license to each other. Why? Because each of their patents applies to one small aspect of the product, rather than to the entire product. If they refused to trade patents, they'd all be designing cars that sucked, relative to available technology, and they know it -- they know they'll just be competing to sell their sucky cars versus the competition's sucky cars. What's the point of that?

    But in the medical device industry, that one patent effectively "IS" the product. So company A, which holds the patent necessary for reacting a diagnostic molecule with some strand of telltale DNA, but has a sucky and inferior technology for detecting the reaction, doesn't have to worry about company B releasing a competing sucky product, so Company A has little motivation to issue licenses.

    I speak, I regret to say, from experience. An astonishing amount of work goes into trying to create diagnostic products that do not infringe.

    To put the torture behind us is, inevitably, to put it in front of us.

    by UntimelyRippd on Wed Mar 31, 2010 at 04:33:23 PM PDT

  •  Great. I'm gonna patent Sperm (3+ / 0-)
    Recommended by:
    triv33, geomoo, MsGrin

    I'll be rich!  RICH!  

    You hear that Palin?  No more pregnancies unless you license it from me.  

    Seriously though -- whoever thought that "discovery" of an organic compound that nature has already created is the same as inventing an iPod and deserves the same patent protection.   It is idiotic.   I hope this ruling stands.  

    Now if they discover a way to make billions of kilowatts from a petrie dish of breast cancer cells... I'd give them a patent for that.  But trying to patent the gene itself.   Really lame.  

  •  the patent is on the test.... (1+ / 0-)
    Recommended by:
    MsGrin

    but in this case, the test is sequencing the BRCA 1/BRCA 2 gene.  So it is the sequence of the normal gene that is patented- most tests are on the testing method itself, not the sequence.  Still, this will go through a round of appeals.

    One interesting thing is that diagnostics tend to not be the high profit area of medicine- there is a lot of competition to come up with multiple diagnostics so folks can compete.

    What I don't understand is what Lyme disease test is affected by gene sequence patents.  There is a plea to be tested, and a desire to have better tests.  But is it lack of patents or presence of patents that stop physicians from testing for Lyme disease.

    You shall know the truth, and the truth shall make you mad. Aldous Huxley

    by murrayewv on Wed Mar 31, 2010 at 06:17:08 PM PDT

    •  Granted, it's more complex (1+ / 0-)
      Recommended by:
      geomoo

      There are actually a number of patents, but not on sequencing specifically, but on the bug itself.  Some of the patents are owned by universities/individuals/companies which have intended to develop tests and some for vaccines.

      Given that portions of the organism are owned, it makes it very difficult for the non-owners to use those parts of the organism for testing... hence testing development (and research into cure) becomes much more difficult and expensive or doesn't happen at all.

      The first test of the Lyme two-step is believed to have an error rate of 35%.  The second test (with higher specificity) often does not get done.

      All we know is this - the antibody testing seems to have a high error rate due to a very sophisticated bug which can elude detection by the immune system.  But time and again, seronegative patients end up having spirochetes found in their tissues and spinal fluid.  I don't know what all the hold up is, but it clearly is related to the legal and financial aspects of studying the organism.

      "Trust me, after taxes, a million dollars is not a lot of money." --Michael Steele

      by MsGrin on Wed Mar 31, 2010 at 06:43:41 PM PDT

      [ Parent ]

  •  public funds used, too (3+ / 0-)

    the other piece of this puzzle which is so loathesome, is that in the Dole-Bayh act of 1981 when this right to patent organism, or access to organisms, was granted there was another critical law included:

    the results of research funded by the public can be owned privately.

    So, we pay for the research, but we don't get to know the results unless they decide to share.

    •  Very important point to understand. A couple of (1+ / 0-)
      Recommended by:
      kurt

      years ago the editor of one of the main medical Journals (NEJM, JAMA?) said that they would only publish studies that were registered with them at the beginning. This was an attempt at more transparency in corporate-funded medical research (and all of it is.) Because, as Una points out, they only want to publish results that favor their drug/device/procedure. At least, others in the field would know that a particular study was never reported by the investigators.

      Anyone know if that actually happened, has worked?

      Okay, the Government says you MUST abort your child. NOW do you get it?

      by Catskill Julie on Thu Apr 01, 2010 at 08:48:24 PM PDT

      [ Parent ]

      •  Take a look (0+ / 0-)

        clinicaltrials.gov

        Registry of all clinical trials.

        Bill the Butcher was right. I am a nativist, and that is a progressive position.

        by numberzguy on Thu Apr 01, 2010 at 08:52:54 PM PDT

        [ Parent ]

        •  Thanks, that's a good thing. But not what I was (0+ / 0-)

          talking about. It was a controversial decision by NEJM Editor Marcia Angell in response to a questionable study that caused some scandal. Can't locate it right now, Sorry. Just wondered if some one on this thread remembered whether that policy was implemented and if it worked at all.

          Okay, the Government says you MUST abort your child. NOW do you get it?

          by Catskill Julie on Thu Apr 01, 2010 at 10:28:17 PM PDT

          [ Parent ]

  •  Note--the rash can look different also. (4+ / 0-)

    Luckily for me, I got an angry 18-inch rash across my belly.  The first two doctors said tick.  The third doctor showed me a photo of a nearly identical rash to mine being identified as Lyme.  So, any rash in Lyme country needs attention.  You won't be able to get a test immediately, so if there is no explanation for the rash, better to take an unnecessary round of antibiotics than to gamble with this very serious disease.  And I say that with acute awareness of the problems involved in over-use of antibiotics.

    Thanks for this diary.  It is stunning that anyone every imagined owning dna.  Sick minds.

    The falsifications and fictions that are ruling us have become life-threatening.

    by geomoo on Wed Mar 31, 2010 at 10:59:51 PM PDT

    •  And since bullseye rashes don't get reported (5+ / 0-)

      even though they are considered de facto evidence of infection, and people who are treated while there still is a rash, infected bites are not counted among the COUNTED verified infections.  Hopefully, early abx will take care of any problems.

      I really hate that only 1 in 3 doctors who saw the rash knew what it was given the infection numbers in the country.  That's just disgusting.  One thing for my diagnosis to take so abysmally long in the presence of just dizziness and disorientation and tingling, but you had CLEAR, UNCONTESTED EVIDENCE.  Crap - the stories I hear make me cringe every day.

      "Trust me, after taxes, a million dollars is not a lot of money." --Michael Steele

      by MsGrin on Thu Apr 01, 2010 at 06:32:38 AM PDT

      [ Parent ]

  •  Patenting human genes was a terrible idea. (1+ / 0-)
    Recommended by:
    kurt

    Maybe this ruling can help walk us back to some sanity.

    Okay, the Government says you MUST abort your child. NOW do you get it?

    by Catskill Julie on Thu Apr 01, 2010 at 08:50:10 PM PDT

  •  Great diary! Thanks for rescuing it (2+ / 0-)
    Recommended by:
    churchylafemme, phonegery

    I've been following the case and read of the recent court decision.  Hopefully it will be upheld as the patenting of genes is detrimental to both health care and further research.

    Myriad must be anticipating the loss of their patent on the BRCA 1 and 2 genes, as they've been on a campaign for the last year to frighten as many women as possible into getting genetic testing while they still control the patent.

    The "Susan G. Komen for the Cure" Breast Cancer Foundation has also been pushing genetic testing through legislation - its at the core of the "EARLY Act" a misguided bill that, if passed, would appropriate federal funds to "educate" pre-teen and teenage girls about breast cancer and encourage them to get genetic testing.  It's well intentioned, but misguided and flawed legislation.

    http://www.govtrack.us/...

    Ironically, the EARLY Act focuses on promoting Myriad's BRCA 1&2 testing for minority women which, as the scientist in the video points out, may not be accurate in measuring risk for minority women.

    Komen also funded the initial research to help discover the genes and receives funding from Myriad Genetics to promote widespread genetic testing.

    Our state's Dept. of Health recently devoted its entire newsletter to encouraging women to get genetic testing, something I found very inappropriate.  Myriad has been spending lots of money in the last several months.

    Here are some talking points from National Breast Cancer Coalition who doesn't support the EARLY Act:

    Our concerns center on the following:

    1.) That breast cancer in women under 40, an admittedly rare occurrence, necessitates a broad public health campaign and education in secondary schools and universities;

    2.) That we know what women should do to prevent or lower their risk of breast cancer;

    3.) That breast self examination and clinical breast examination are effective in saving lives in this age group;

    4.) That ethnicity is sufficient to trigger genetic counseling and testing

    5.) That there are significant differences in what we know and what we should tell women under 40 years old versus over 40 years old.

    More analysis at this link

    Again, thanks for the great diaries on this topic.  I hope the ACLU wins its case.

    "Private health insurers always manage to stay one step ahead of the sheriff." Sen. Sherrod Brown

    by Betty Pinson on Thu Apr 01, 2010 at 09:00:38 PM PDT

  •  Great diary, MsGrin! (1+ / 0-)
    Recommended by:
    kurt

    I'm sorry that I didn't see it in time to tip and rec.

    Under Our Skin: There's No Medicine for Someone Like You

    by churchylafemme on Thu Apr 01, 2010 at 10:46:49 PM PDT

  •  what am I missing? (0+ / 0-)

    I agree that naturally occuring DNA should not be patentable.  What I am missing here is how this relates to the failure to diagnose you in a timely fashion.

    •  Thank you for asking (0+ / 0-)

      Sorry, I had not seen your comment or would have answered earlier.

      One of the problems with patenting is that it moves scientific inquiry from doing investigation for its own sake (just to figure out how things work) and turns science more exclusively into doing it for how to make money off how it works like through testing to identify it or vaccinate from it.

      When a patent is owned, it discourages investigation by others than the patent-holders because now there are costs incurred in doing investigation on what is owned by others.  With ownership, the patent-holders are more likely to be motivated by what earns money as opposed to learning whatever there is to be learned.

      This part is not patent-related, but there are also financial pressures to keep information from being learned because it will likely cost other people money to treat it - in medicine, very often health insurance companies would prefer new treatments to be considered 'investigational' so that they can avoid paying for those treatments through exclusions in their contracts.

      It's these (above) conflicts of interest which stifle collaboration on understanding of emerging medical issues, such as an infection of epidemic proportions.  You might watch the video in the intro again.  When information is hoarded, it doesn't tend to get widely circulated.

      What happens when leading medical associations say that a disease is 'hard to catch and easy to cure' as IDSA has, is that doctors don't recognize the disease as a problem and don't learn how to look for signs of it.  It keeps the disease invisible and patients stumbling around for someone recognize what is wrong and treat them for it.

      I've heard that in medical school doctors are taught that when they hear hoofbeats they should think 'horse' rather than 'zebra.'  In my case, 'crazy' came more readily to mind than a disease which causes 200,000 new infections in the country annually, because that disease is not discussed much and is said to be not a problem by the leading medical association.  My disease happens cause some crazy: Sure would have been nice to have had someone check to see if my symptoms came from something that could be treated rather than to assume my issues were imaginary.  I have classic symptoms of neurological Lyme.  I was seen by at least a dozen doctors at UCLA from an assortment of specialties - you'd think one of them might have imagined that Lyme needed to be ruled out before dismissing me.

      As they say in the video, it's a kind of 'perfect storm.'

      "Trust me, after taxes, a million dollars is not a lot of money." --Michael Steele

      by MsGrin on Wed Apr 07, 2010 at 10:02:07 AM PDT

      [ Parent ]

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