This hearing is part of an antitrust settlement Connecticut Attorney General Richard Blumenthal negotiated to address “serious flaws” in the IDSA guidelines.

Read the Attorney General’s press release on the guidelines.

The hearing is not open for public attendance but it will be streamed live over the Internet from the IDSA website. For more on the IDSA broadcast and the 18 patients, doctors, and research scientists who will testify, see the IDSA website

At the same time, the California Lyme Disease Association (CALDA) will provide up-to-the-minute summaries of the testimony on its new “IDSA hearing” blog, along with an open discussion forum. For more information, visit the CALDA website

This hearing is the first glimmer of hope that the definition, diagnosis, and treatment of Lyme will finally move out of the hands of one politically-motivated group and into the mainstream of accepted (and reimbursed!) medical care.

UPDATE: 7/25/09

From www.lymepolicywonk.org.

“The IDSA settlement agreement calls for an open public meeting which must be aired live over the internet. I have serious concerns about the restrictions the IDSA is imposing on people who want to watch the hearings and am discussing these with the Connecticut Attorney General’s office, but meanwhile I want to provide you with information so that if you want to watch you are prepared. The thought of live on the Internet was simply that people would click a url and be able to watch. But the IDSA has placed a number of barriers to access:

People are required to have two pieces of software in order to access the hearing, Windows Media Player and Microsoft Silverlight. While some people may have this software on their systems, others will need to download it. You-niversity, which is the service providing the webcast, has a test you can run to see if your computer can view the site. In order to run the test, you must provide a name and email. You can run this test today and should do this to make sure you will not have any problems.

http://www.idsociety.org/WorkArea/showcontent.aspx?id=14974

Apple computers may not have Windows Media Player installed and Microsoft Silverlight is a relatively new software program. Technical support at You-niversity told me that their webcasts do not work with Microsoft Chrome browser but will work with Firefox and Safari. You-niversity.com websites says that it does not work with Apple, but a friend went through the process and got it working. If you have technical problems, they can call their support number (1-877-867-7300) and wait for a call back. Mine took ½ hour to call back.. Do not put this step off. You do not want to be calling the day of the hearing when the phone banks may be overloaded.

People must register for the event. This requires disclosure of private information. I assume this will be a name and email, but it could be more. I was told by you-niversity technical support that registration it is not “required” by their system, but IDSA is requiring it.

The registration period is 20 minutes before the event and begins at 7:40 am EST. From response to my survey, I would say we may have 3,500 people or more trying to register for this event. I do not know whether their system can handle this volume of people in that time frame, but I have serious concerns.”

The tongue-in-cheek idea of the promotion is to save a mother afflicted with Lackus Appreciatis, an “overwhelming feeling of recurring unappreciatedness and seasonal ingratitude.” In a video featuring actress and singer Florence Henderson, visitors are urged to join the Mom-a-Thon to “cure at least one million moms.”

Beyond the questionable humor of this idea, the site included material offensive to anyone who has or is connected to Lyme Disease. At the bottom of the site was this notice (which was removed after many Lyme sufferers contacted Kodak via their website and I tweeted about the issue on Twitter):
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IMPORTANT NOTE ON THE MISDIAGNOSIS OF LACKUS APPRECIATIS

Many cases of Lackus Appreciatis go undiagnosed because the affliction is often mistaken for other ailments, including: Heat Rash, Lyme Disease, Acne Vulgaris, Restless Leg Syndrome, Aolpecia, Hay Fever, Shingles, TMJ.
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Lyme is a very serious illness for many people who have it.  Do you think anyone would have
thought it funny if Kodak had written their copy this way:

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IMPORTANT NOTE ON THE MISDIAGNOSIS OF LACKUS APPRECIATIS

Many cases of Lackus Appreciatis go undiagnosed because the affliction is mistaken for other ailments including cancer, AIDS, pneumonia, macular degeneration, diabetes, renal failure, dementia, and heart disease.
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Kodak, their ad agency, Bradley & Montgomery and any other companies who want to use Lyme Disease in promotions should treat it in the manner that the seriousness of the disease calls for. People who have Lyme Disease have good senses of humor, but having Lyme is no laughing matter.

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