Author | LymeDisease.org
There’s a scene in the Lyme documentary Under Our Skin, where somebody demonstrates how to “flag” for ticks. With his trusty long-haired dog trotting through the woods beside him, the man drags a big white cloth alongside the trail, and shows the camera how quickly and easily he picks up ticks. I’ve seen the movie several times, and whenever I get to that part, I silently scream at the guy, “What about the dog? Take care of the dog!”
The IDSA has set the review panel date for July 30th. None of the other calendar dates have changed. The applications for the panel are due April 17th, document submissions are due April 24th, and selected presenters will be notified by May 15th. If you intend to apply to present or are making a document submission, please let me know and send me a copy of your application or submission at johnson.lorraineb@gmail.com
You never pass legislation in a vacuum. The backdrop for the ongoing efforts to pass the Lyme bills included, in August 2005, Hurricane Katrina. In September, 150,000 people gathered in Washington DC to protest the Iraq war and the US death toll approached 2,000. Then in October, a grand jury indicted “Scooter” Libby, Vice President Dick Cheney's Chief of Staff, on felony charges. 2006 brought new challenges and distractions for Lyme advocates, too. With all these pressing issues to deal with, how could we expect legislators to fit Lyme disease legislation into their calendars?
JAMA is having a personality conflict with itself. After publishing 3 very strong articles on the ethics in guidelines development, it has asked those who question ethics violations in JAMA’s publications to keep quiet about them. In JAMA’s view, conflict violation in its journal should be discussed only if and when JAMA decides to discuss them. This sounds like a policy designed to silence whistle blowers at a time when we need more whistles and fewer muzzles. Not surprisingly, the Association of Health Care Journals has come out against JAMA on this one.
It was 2005, the first session of the 109th Congress. There were two competing bills in the House, and no Senate bill. No one knew what the senators would do. All we could do was wait… and hope. Finally, we had our answer, but the landscape was shifting. It might be impossible to pass legislation, even if everyone united behind a single bill.
Sometimes someone does something so wonderful. Really! Something so wonderful that you have to stop, take a breath, exhale, and look again. In this world, the world of patients with Lyme disease, it happens rarely. And, when it does, we need to acknowledge it, and, more importantly, we need to acknowledge those who do the right thing no matter what. When someone outside this community steps up to bat for us, well, we should just stop what we are doing and give thanks. Here is my thank-you to Dr. David Volkman. (p.s. you can write one too)
Some advocates had not been satisfied with the amended LIFT bill that had passed the Senate on consent in 2002. Since many people seemed unclear on the exact provisions of the different versions of the Lyme bills, LDA president Pat Smith wrote a letter clarifying differences between the original LIFT bill and the amended version that the senators had passed.
Merrill Goozner continues his insightful beat on conflict of interest articles by JAMA this year. Count them, one, two, three by JAMA–THIS YEAR–SO FAR–AND ITS ONLY MARCH! Does this mark a trend? A turning point for conflicts of interest in Lyme disease? In medicine? Do medical societies have an obligation to hold certain truths to be self evident–that patient concerns come before industry interests and ties?
Sometimes Congress is busy with other matters, like wars and disasters. Early in 2003, Space Shuttle Columbia disintegrated during reentry, killing all 7 astronauts onboard and then in March the United States invaded Iraq. So perhaps it was a minor miracle that on July 31, 2003, Senator Santorum (PA) reintroduced a Lyme bill containing identical language to the 2002 amended LIFT, S. 1527.
When is an open hearing not an open hearing? How do you give the appearance of being open without, well, actually being open? How do you deal with the issue of public accountability in Lyme disease guidelines when you would rather not? I'd say the IDSA open hearing, which excludes the public from participating, but allows them to "view" the proceeds from a safe distance probably fits the bill. And that, my friends, is what the IDSA intends to do. Hold a public hearing that fits the "form" but not the "substance" of a public hearing. In this way–the IDSA does not have to face the patients whose lives it is destroying. This is a one sided communication device–something the patients are quite used to, but something the IDSA should set aside in favor of accountable transparency. If you are going to talk the talk , you ought to walk the walk. Let's call this hearing what it is– one more way to "silence the sick".
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