This just in from Lorraine Johnson: We have been discussing concerns regarding the IDSA hearing viewing restrictions with the Connecticut Attorney General’s Office, who has assured us that the registration requirement has been lifted and provided us with other information about the hearing. The information is fluid and more details may emerge. I will keep you posted on this as news develops.
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.
It's about going from the abstract to the concrete. Getting out the stop watch and thinking about just how long is 15 minutes. It's enough time to eat lunch or do an errand. But how long is 15 minutes in words? I haven't had to give it much thought until recently. It turns out 15 minutes translates into a number of words. In speeches the pace is generally between 120 and 160 words per minutes. So, if you do a scripted speech for 15 minutes, you have between 1,800 and 2,400 words. Now, if I could only master the art of speed read and teach the panel to speed listen, we'd be off to the races!
CALDA, the national Lyme Disease Association and Time for Lyme have issued a joint press release regarding the IDSA Lyme review hearing, which is schedule for July 30th in Washington D.C. The release highlights the growing opposition to the IDSA guidelines, the importance of acknowledging the full spectrum of science in Lyme disease, and the importance of permitting clinical judgment and treatment options for patients. Concerns are also raised about the current process, which Attorney Lorraine Johnson points out is not impartial because IDSA controls the process and has selected both the panel members and those who may present before the panel. Of critical importance is that fact that no physicians who treat chronic Lyme disease were selected to sit on the panel. The testimony will be aired live over the internet on July 30th.
If you have not read the recent editorial by Attorney General Blumenthal published today in “The Day”—you are in for a treat. Despite the IDSA’s protests that the guideline review process is “voluntary”, Blumenthal observes that the IDSA “effectively admitted the flaws by agreeing to a review and reassessment of its 2006 guidelines by a conflicts-free panel”.
Well, as you can see, I’ve reached the cutting and pasting portion of writing my speech for the IDSA Lyme Guidelines Review Panel—a bit like making a quilt. You start off with yards of different fabrics, cut them into little squares and eventually reassemble them into the quilt, tying off the edges carefully and trying not to prick yourself with the needle on the way. As a patient advocate, I am allotted 15 minutes to make my point and leave the podium. By the way, it is a lot more difficult to write a 15 minute speech than a 45 minutes speech—size matters. It’s like Mark Twain said: “I didn't have time to write a short letter, so I wrote a long one instead.”
Andy Schlafly of AAPS describes the efforts of AAPS to work with patient groups in health care reform for autism. His comments on how important it it to speak out and for patients and physicians to join together to combat over-zealous medical boards that go after physicians who treat patients is compelling. He points out that the medical board in Texas is in cohoots with insurers behind the scenes and that this has impeded legislative efforts. Take a look at his video. The parallels with Lyme are striking.
Terrence McNally at KPFK, a local public radio station in Los Angeles interviewed me, Andy Wilson, Mandy, and Dr. Horowitz on June 23rd about the film, Under Our Skin, and about the antitrust settlement. It is a good listen if you have not heard it. The link to the podcast is below. A close friend snapped the picture of me in the booth.
The Infectious Diseases Society of America’s new Lyme disease guidelines review panel will hold a one day hearing on July 30. This hearing is part of the antitrust settlement that the Connecticut Attorney General negotiated. Of the 18 speakers selected to testify, two are patient advocates, including me. The testimony will be aired live on the internet on July 30 so stay tuned.
STAND UP AND BE COUNTED
CALDA is conducting a survey of individual Lyme experiences to give you a chance to have input. Results of the survey will be included in my testimony to the IDSA panel.
A couple of weeks ago, I suggested you look the “pistols at dawn” action at the OK Corral between IDSA president, Dr. Ann Gershon, and Dr. Stricker and me on the IDSA guidelines, antitrust law, and Lyme disease. Drum roll. . .The reply by Dr. Sticker and me is now posted on the Journal of Medical Ethics website. This lively debate is a breath of fresh air to the Lyme community.
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