May is Lyme Disease Awareness Month
Lyme is the most prevalent vector-borne disease and one of the fastest spreading diseases throughout the United States, and the subjects of diagnosis and treatment of Lyme are politically-charged.
This series of diaries is designed to provide information to the Daily Kos community both for Lyme disease prevention and for those Kossacks living with Lyme. Because the disease is often missed by physicians, these diaries may assist an individual or two in pursuing testing which might otherwise have been missed.
The Lyme Disease Awareness series is eclectic, including personal statements, informational pieces about the science of Lyme, and calls to action for community and political advocacy.
We hope you'll all join us in learning about this rampant disease and the medical/financial/political morass in which Lyme patients find themselves.
Collect the complete set of diaries at LymeDiseaseAwareness
Today's diary is by MsGrin, diary originally posted 3/31/10
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 on 3/30/10. 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. 
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. ;-)
Hat tip to Caelian for this link to more analysis of the Myriad decision and patenting>
