Amanda
Frequent Contributor (1K+ posts)
Member # 14107
posted
From Under our Skin blog.
Could be a year or more, depending, see paragraph 2...
The Infectious Diseases Society of America (IDSA) has missed its target date of December 31, 2009 for rendering a decision on whether it will rewrite its Lyme disease medical guidelines, which according to a group of leading Lyme disease specialists, ``mislead clinicians and result in poor patient care.''
Diana Olson, IDSA VP of Communications, said that the medical evidence review panel, which has met over a dozen times in 2009, is aiming to release recommendations ``as early as possible in the new year.'' If a rewrite is called for, the IDSA revision would be completed in ``several months to a year or more'', leaving suffering Lyme patients in treatment purgatory for four years since the scientific integrity of the guidelines was first questioned.
The reevaluation of the IDSA Lyme guidelines was driven by an antitrust investigation led by Connecticut Attorney General Richard Blumenthal. During his 17-month investigation, Blumenthal found substantial conflicts of interest among the 2006 guidelines authors, who held commercial interests in Lyme-related diagnostic tests, vaccines, and insurance. In addition, he found that this panel had suppressed scientific evidence and excluded opposing views.
In December, Senator Chuck Grassley launched an investigation into the conflicts of interest of 30 other medical societies, saying in a press release, ``These organizations have a lot of influence over public policy, and people rely on their leadership. There's a strong case for disclosure and the accountability that results.''
During the 2.7 years since the IDSA Lyme guidelines investigation began, IDSA leadership has shown a consistent lack of concern, remorse or urgency in correcting possible inaccuracies and biases in the 2006 Lyme guidelines.
As soon as Blumenthal's investigation was announced, IDSA's conflict-riddled panel launched a far-reaching campaign to disseminate their 2006 recommendations across the U.S. medical information network through physician continuing education (CME), medical textbooks, infectious disease board certification courses, online resources, and medical school lectures. So, even if the IDSA guidelines are revised immediately, it could take a year or more to remove flawed diagnosis and treatment recommendations from the system.
Furthermore, rather than censuring the guidelines chairman, Gary Wormser, M.D., for violating the IDSA's conflicts-of-interest policies by holding ``a bias regarding the existence of chronic Lyme'' and handpicking ``a likeminded panel without scrutiny by or formal approval of the IDSA's oversight committee,'' the IDSA leadership awarded Wormser the IDSA's 2007 Society Citation for being ``a bold champion for rational, evidence-based medicine.''
To add insult to injury, three days after the mandated evidence hearing, which according to many observers was an evidence-based victory for Lyme patient advocates, former IDSA president Anne Gershon IDSA denied any IDSA wrongdoing, saying, ``IDSA's signing the agreement was not, as [Blumenthal] alleges, an admission of guilt, but an effort to end a fruitless investigation.''
Gershon went on to say, ``The notion that the authors had financial conflicts of interest is absurd to anyone who has read the guidelines, which recommend generic tests and a short course of generic drugs.''
Lyme disease policy expert, Lorraine Johnson, J.D., M.B.A., explained why this IDSA statement is misleading: ``People in the Lyme disease community know that conflicts of interest were a big issue in the Lyme vaccine. We also know that the narrow disease definitions that suited the vaccine trials the best, hurt patients by denying and delaying diagnosis to patients with Lyme.''
Johnson provided details on the author conflicts in a recent article in the Journal of Medical Ethics:
``The most influential panelists on the IDSA guidelines panel had commercial interests related to Lyme vaccines, diagnostic tests, and insurance. Some of the panelists had been involved in the development of the first Lyme vaccines--had run the clinical trials for these vaccines-vaccines which were withdrawn from the market after patients reported serious neurologic side effects. Some had been sued as part of a class action lawsuit or served as expert witnesses for the vaccine manufacturer. Some of the panelists acknowledged they owned Lyme diagnostic tests or were working on the second generation of Lyme vaccines, which are still under development.''
In the meantime, as the number of U.S. Lyme cases grows by about 30% per year, Lyme patients are trapped between a broken health care system and biased medical guidelines that are being used by insurance companies to deny treatment.
Here's to hoping that Senator Grassley and CT Attorney General Blumenthal (who is now running for the Senate) will put some legislative teeth into making ``non-profit'' medical societies like the IDSA more accountable for patient welfare and less beholden to vaccine and drug manufacturers.
Photo caption: At the July 30, 2009 Lyme evidence hearing, ILADs submitted 300 pages of analysis and 1,300 pages of peer-reviewed research contesting the IDSA Lyme Guidelines recommendations.
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Excellent work by UOS folks... as always! THANKS!
BTW- Guess I am going to have to start "double dating" now.
But I do wonder if my boyfriend in CT... you know him, the mighty fine Attorney General... well...
Do you think he would mind us taking Senator Grassley out to some meetings when we go? Hey, I'll buy the ice cream afterward!
Me tinks I like that fellow too! Way to go Senator Grassley!!!
lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Thank you for posting that Amanda.
mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Me thinks we need a earthquake to wake these people up before another 200,000 are sick.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Embedded in the system is HHS bias against ILADS and for IDSA definitions and treatment options.
I just searched "IDSA" in http://www.HHS.gov and got 58 hits. My search of "ILADS" got zero hits.
Under "Lyme disease," the HHS.gov search engine seems geared to only find IDSA-approved sites.
An HHS search of "chronic Lyme disease" got IDSA approved data from Phillip Baker, "Lyme Disease Program Officer, Division of Microbiology and Infectious Diseases, National Institute of Allergy and Infectious Diseases,National Institutes of Health, U.S. Department of Health and Human Services"
Another HHS.gov search yielded "Clinical Alert: Chronic Lyme Disease Symptoms Not Helped by Intensive Antibiotic Treatment."
At http://www.cdc.gov a search of "chronic Lyme disease" got a promo pf post Lyme syndrome and a warning that longer-than-standard treatment Lyme disease is "not helpful and can be dangerous."
I found no dissenting physician opinion there.
The last four HHS Secretary's bias crossed party lines.
Donna Shalala (under Bill Clinton) became Political Science Professor and President, University of Miami (and United HealthCare board member.)
Tommy Thompson & Mike Leavitt (under George Bush) left for more lucrative horizons: Mr. Thompson to AKIN GUMP STRAUSS HAUER & FELD LLP - http://www.akingump.com/ which "provides general corporate and transactional services to a wide range of health care industry clients."
Under President Obama, Kathleen Sebelius is at present extending the HHS tradition of favoring restrictive diagnostic and treatment guidelines.
Coincidence? Or business as usual?
[ 01-17-2010, 06:16 PM: Message edited by: Neil M Martin ]
-------------------- Neil Posts: 697 | From Tucson, AZ USA | Registered: Apr 2002
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I fear they won't listen to us until we let them
see us. If by bus,car, wheelchair and gurney, I
think out of site-out of mind. I was asked today to
go talk to a woman who is down with what the docs
are calling her LYME is back. I am sick of this
denial-SS says they don't deny I have LYME-they
just think I can work. I believe we have got to
make a showing of numbers. What say you?
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Where do you propose we show up? Is here a suggested place and time?
Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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