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» LymeNet Flash » Questions and Discussion » Activism » PLEASE READ!! RE. CT investigation!!!!!! (Page 1)

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Author Topic: PLEASE READ!! RE. CT investigation!!!!!!
luvdogs
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Oh my God

Please contact your papers and ask them to publish this press release.

FOR IMMEDIATE RELEASE May 1, 2008

CONTACT:
Nicole Rodgers 202-822-5200

Settlement Announced in Landmark Investigation of Lyme Disease Diagnosis
and Treatment Guidelines

Patients' Rights Groups Applaud Connecticut Attorney General
Blumenthal's Settlement in Anti-trust Case Against Powerful Medical Society


Hartford, CT - Patients' rights groups today hailed Connecticut Attorney
General Blumenthal's announcement of a settlement in a landmark
antitrust investigation into the Lyme treatment guidelines of the
Infectious Diseases Society of America (IDSA).

``My office uncovered undisclosed financial interests held by several of
the most powerful IDSA panelists,'' said Blumenthal. ``The IDSA's
guideline panel improperly ignored, or minimized, consideration of
alternative medical opinion and evidence regarding chronic Lyme disease,
potentially raising serious questions about whether the recommendations
reflected all relevant science.''

The groundbreaking settlement announced today forces a complete review
of the IDSA guidelines by a new panel free from conflicts of interest,
specifically excluding previous panel members. This panel will consider
a range of scientific evidence in a public forum broadcast live over the
internet and will be overseen by a specialist in financial conflicts of
interest in medicine.

``This settlement makes it clear that the IDSA guideline development
process was corrupted by a commercially driven panel that excluded
evidence supporting longer term treatment of Lyme disease,'' said
attorney Lorraine Johnson, Executive Director of the California Lyme
Disease Association (CALDA). ``This settlement allows suppressed
scientific viewpoints and evidence to be heard, and it is promising news
for patients.''

This is the first-ever antitrust investigation against a medical
society's guidelines development process.

``We congratulate Attorney General Blumenthal for exposing the IDSA's
conflicts of interest and helping reduce the suffering of Lyme patients
everywhere,'' said Pat Smith, president of the national Lyme Disease
Association (LDA). ``The IDSA guidelines are dangerous for patients who
suffer longer-term Lyme symptoms that do not fall within the IDSA's
narrow disease definition.''

The IDSA guidelines are treated as mandatory within the medical
community. More than 50 physicians who use longer-term treatment
approaches have been investigated or sanctioned by state medical boards.
The guidelines can also result in financial problems for patients, since
insurance companies refuse to reimburse for longer-term treatment and
pharmacies may refuse to fill prescriptions.

The majority of individuals involved in the IDSA guidelines development
process held direct or indirect commercial interests related to Lyme
vaccines, patents, and/or test kits, and did not take the opinions or
experiences of the competing Lyme groups into account.
While the announcement of a settlement comes as a huge relief to
suffering Lyme patients, the case has much broader implications for a
health care system that often contends with conflicts-of-interest in
guideline processes - guidelines which are often used by insurance
companies to limit diagnosis and treatment options.

``Today's settlement marks an important victory for all patients who
suffer Lyme disease, but it is also a victory for anyone concerned about
health care,'' said Johnson. ``Commercially driven guidelines that limit
patient treatment options are a major issue today in healthcare, and
this decision marks an important step towards addressing it.''

The national Lyme Disease Association, (LDA), CALDA, and Time for Lyme
are non-profit organizations that were founded by individuals who had
personal experience with Lyme disease, in order to address the lack of
education and support services available for this newly emerging infection.

# # #

[bow]

[ 01. May 2008, 02:03 PM: Message edited by: luvdogs ]

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sixgoofykids
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[woohoo] [woohoo]

--------------------
sixgoofykids.blogspot.com

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sometimesdilly
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What INCREDIBLY good news!!!!!!


[woohoo] [woohoo]

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lymednva
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the times they are a changin'!

[woohoo] [woohoo]

--------------------
Lymednva

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Geneal
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Somebody pinch me. [Big Grin]

If this is a dream, don't wake me up!

[woohoo]

Hugs,

Geneal

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luvdogs
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Are you guys teary like I am??? OMG!!!!!!!!!!!!!!!!!! [woohoo]
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D Bergy
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I never thought I would see this day!

Congratulations to all who made this possible.

D Bergy

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tickled1
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That's awesome! Shouldn't this let Dr. J off the hook?
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cs
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Quick, someone fax this press release to Pallone and all the other congresspeople involved in the bills! I would, but I am about to run out the door with the kids. Does someone have the time to do that?
-k

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METALLlC BLUE
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OWNED!!!!!!!!!!!!!!!!!!!!!!!111111111111111111111

I guess they got my letter(s). *teehee*

--------------------
I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.

E-mail: [email protected]

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lymielauren28
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FINALLY!!! THIS IS HUGE!!!

[woohoo]

--------------------
"The only way out is through"

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Allie
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YES I'm TEARY TOO!!

[woohoo] [woohoo] [woohoo]

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Michelle M
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Ditto that!!! [eyes all glassy!!!]

Someone go give that the AG a HUG, please.

Now, let's have this make some SERIOUS HEADLINES!!!

Michelle

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Michelle M
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The AAN Guidelines should similarly fall like dominoes, since they simply adopt the IDSA Guidelines.

(AAN = American Association of Nincompoops, a/k/a Neurologists.)

Michelle

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AliG
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I'd like to nominate Blumenthal for the Presidential Election!!!!!

I'm going to e-mail [email protected] to express my gratitude!!!!

[woohoo] [woohoo] [woohoo]
[woohoo] [woohoo] [woohoo]


GOD BLESS ATTY GENERAL BLUMENTHAL [kiss] !!!!!!!!!!!!

[group hug]

--------------------
Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner.

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Michelle M
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Also, maybe now the CDC will remove this "IDSA Guideline" drivel from their website. They MUST.

Michelle

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David95928
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Am I awake?

--------------------
Dave

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Monica922
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Woohoo!

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northstar
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I think I am going to cry.....all those doctors
and patients and their families, who have been affected by those
slimeballs.....

Thank you AG Blumenthal!

Northstar

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northstar
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hmmmmm.....guess the AMA and AAN had better
do some backtrackin'
or they are next in line.

and my oh my, what will the insurance
companies do? Will they have to
retro pay me for what they did not cover?

and will drs. hurt by all this, be
able to sue and ask for reparations?
N/

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Keebler
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-

Well, in my state, "we don't have lyme here" is the official bumper sticker.

This might wake up a few folks, I hope.


-

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AliG
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I wish I could do this right now, but I don't have time.

Maybe we can also e-mail it to the TV News stations and radio stations & ask them to do reports?

--------------------
Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner.

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AliG
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GET COPIES TO THE PEDIATRICIANS!!!!!!

Is the jerk responsible for "The Pediatric Redbook"'s take on Lyme an IDSA bigshot?

--------------------
Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner.

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KS
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YIPPEEEE!!!!!

THIS IS HUGE!! Now, what?!?!?

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painted turtle
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I'm still skeptical, after all I've been through.......

But secretly,

[group hug]

[woohoo]

Can someone post a link to this exact article???

--------------------
www.lymefire.blogspot.com

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sometimesdilly
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the fullness of this victory is slowly sinking in.

if the IDSA agreed to settle, then there won't be an appeal of any kind by the IDSA. wow.

What Blumenthal says will happen will happen. WOW.

i'm not going to be surprised if at some point down the line various medical and insurance interests use this case to work on prohibiting state AG's from making this kind of decision again.

Even if so, that is way down the line--

WE WON! WE WON!!!!

There is no better time than now to PUT THE SCREWS ON THE US CONGRESS TO PASS THE DANG LYME BILL!!!

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sometimesdilly
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an important point from the article LymeBlue posted in the other thread about the settlement--


"The treatment guidelines will remain in place while the review, which could take up to a year, is done."

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Allie
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Bettyg has broken up this letter on the next page for neurolymies!!

Thanks a ton Betty! [kiss] I'm sorry I didn't do it myself. I was having a panic attack...

Not to rain on the parade, but just got this from a colleague who is an IDSA member.

This is the link:


Dear IDSA Member:

As you may know, in November 2006 the Attorney General of Connecticut launched an antitrust investigation of the Society's clinical practice guidelines on Lyme disease. The investigation reflects the controversy surrounding long-term antibiotic therapy, which IDSA does not recommend for this condition. We are pleased to inform you that IDSA has reached an agreement with the Connecticut Attorney General that ends the investigation of the Society and its volunteer panel members and reaffirms the ability of IDSA to develop practice guidelines based on the best available evidence and widely accepted standards of care. Our guidelines remain in place and continue to represent the best that science currently has to offer patients.

By reaching this agreement with the Attorney General, IDSA keeps issues related to the prevention, diagnosis, and treatment of Lyme disease in a medical forum where they belong, and out of a courtroom. The agreement calls for a special review of the guidelines, detailed below, which we hope will quell the unfortunate controversy around the treatment of Lyme disease and ensure that patients receive advice and treatment based on the best available medical evidence.

There may be some negative press coverage in the short term, but we are working to make sure it is as fair as possible. (Our press release is available online at http://www.idsociety.org/Content.aspx?id=11182 .) In the long run, we expect this will blow over. We firmly believe it is in the best interests of the Society, its volunteer panel members, and our patients to have this protracted, distracting, and expensive investigation behind us-particularly because the agreement itself is very favorable to IDSA.

Under the terms of the agreement, IDSA will convene a special review panel to conduct a comprehensive and up-to-date evaluation of the scientific literature, in order to determine whether the 2006 guidelines should be revised or updated. As part of the review process, interested individuals will be invited to submit relevant information, and a public hearing will be held to receive additional information. The review panel will consider all the evidence and make recommendations regarding whether the Lyme disease guidelines should be revised. If the panel recommends revisions, they will be carried out in accordance with our normal procedures overseen by the IDSA Standards and Practice Guidelines Committee. The agreement does not set a precedent for future guidelines.

>From a medical perspective, we are confident that the 2006 guidelines are sound. The Connecticut Attorney General's investigation of our guidelines questioned our process but never questioned the medical evidence. Like many medical associations, IDSA is continuously working to improve the process by which we develop guidelines. The panel members had no relevant conflicts of interest. Recognizing the controversy surrounding Lyme disease, the panel carefully considered all information provided by other organizations and individuals. Furthermore, the guidelines (like all IDSA guidelines) were subjected to a rigorous, multi-level review and approval process. We stand by our 2006 guidelines panel, and we believe they reached the right conclusions.

While we were prepared to defend in court any claim that the Connecticut Attorney General might bring and were confident that we ultimately would have prevailed, we concluded that ending the investigation at this stage is in the best interests of IDSA, our members, and our patients. The agreement recognizes that there was no legal wrongdoing. It protects the Society and the volunteer members of the guidelines panel from the burdens of a protracted legal proceeding. It avoids the uncertainty and expense of a continued investigation, which would likely cost IDSA hundreds of thousands of dollars more than the considerable resources already expended. The Connecticut Attorney General is not imposing any fines or penalties and does not have a role in IDSA guidelines panels, on Lyme disease or any other topic. Moreover, those who seek to undermine the credibility of our guidelines will no longer be able to use the stigmatizing phrase, "under investigation."

It is important to note that IDSA's current guidelines remain in place and our advice to physicians and patients remains the same. We are confident that this special review will serve as a further endorsement of our evidence-based process to determine the best treatment for those who suffer from Lyme disease. We sincerely hope it will bring a degree of closure to this controversy for our patients as well as for the Society, although we will be prepared to continue our education and advocacy efforts in this area.

We will weather whatever media storm may break over the announcement of the agreement. In the end, our mission is to make patients well and help them avoid ineffective and potentially harmful treatments. IDSA's guidelines on Lyme disease represent the best advice that medicine currently has to offer.

Please feel free to contact IDSA with any questions or concerns at [email protected]


Sincerely yours,



Donald Poretz, MD, FIDSA
President, Infectious Diseases Society of America

[ 01. May 2008, 06:48 PM: Message edited by: Allie ]

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sometimesdilly
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the IDSA rebuttal:

NEWS RELEASE

For Release: Thursday, May 01, 2008
Contact Information

Contact Name: Steve Baragona
Contact E-mail: [email protected]
Contact Phone: (703) 299-0412

Contact Name: Monica Charleston
Contact E-mail: [email protected]
Contact Phone: (312) 558-1770

Agreement Ends Lyme Disease Investigation By Connecticut Attorney General

Medical Validity of IDSA Guidelines Not Challenged

The Infectious Diseases Society of America (IDSA) has entered into an agreement with the Attorney General of Connecticut ending his investigation of the Society's Lyme disease guidelines.

Under the agreement, the guidelines remain in effect; but in an effort to clear the air, IDSA is voluntarily agreeing to an extra step: a one-time special review of the Lyme disease guidelines.

The agreement ends the investigation of IDSA and its volunteer guideline panel members without the filing of a complaint or the entry by a court of factual or legal findings,

without IDSA paying any fines or penalties, and without imposing on IDSA any restrictions on its right to promulgate guidelines for Lyme disease or any other disease or condition in the manner it believes best serves public health.

``IDSA has agreed to this unique, singular review of our guidelines because the panel will consist solely of physicians and scientists,'' said IDSA President Donald Poretz, MD.

``We are confident that our guidelines for the diagnosis and treatment of Lyme disease represent the best advice that medicine currently has to offer, as is the case with all of the medical guidelines issued by the Society, and we look forward to the opportunity to put to rest any questions about them.''

The IDSA Lyme disease guidelines recommend against long-term antibiotic therapy, an unproven and potentially dangerous treatment.

A small group of physicians outside the medical mainstream and their patients endorse such long-term treatment, despite the compelling medical evidence that it is ineffective and can have serious, life-threatening complications--and, furthermore, is extremely expensive.

This agreement does not change the medical advice to patients: The 2006 Lyme disease guidelines remain in place.

Under the terms of the agreement announced today, IDSA will convene a review panel to conduct a comprehensive review of the Lyme-related literature to determine whether the 2006 guidelines should be revised or updated.

While IDSA periodically reviews all of its treatment guidelines in order to keep them current, the agreement allows for an expanded process that includes an opportunity for public presentation and submission of information to ensure that all points of view are presented to and considered by the review panel.

IDSA is voluntarily agreeing to this extra scrutiny in the hope that it will help put to rest assertions that have been made - all of them unfounded - that IDSA has ignored divergent opinions in developing its Lyme disease guidelines.

This expanded review process is pertinent to this unique case only. IDSA has not agreed to use it as a model for other IDSA guidelines, nor is IDSA urging other medical organizations and societies to use it.

The main actions of the agreement include:

*
Complete resolution of the Attorney General's investigations, issues, and potential claims and causes of action against IDSA and its volunteer panel members.
*
The current Lyme disease guidelines remain in effect. The medical and scientific basis of the 2006 guidelines remains in place and unchallenged.
*
IDSA will convene a review panel to determine whether the 2006 Lyme disease guidelines should be revised or updated. Howard Brody, MD, PhD, who has been jointly selected by the Office of the Attorney General and IDSA, will serve as an ombudsman who will have a limited role that will focus on screening potential conflicts of interest.

The ombudsman will not be involved in the operation of the review panel. Any proposed changes to the guidelines would require a supermajority vote of 75 percent of the panel.

IDSA strongly disagrees with the Attorney General's assertion that panel members had significant conflicts of interest.

Panel members had no financial interests that would have affected, or been affected by, recommendations in the guidelines.

The guidelines recommend generic drugs and generic diagnostic tests. Panel members do not stand to profit from any recommendation in the guidelines.

In fact, the panel members denied themselves and their colleagues an opportunity to generate a significant amount of revenue when they recommended against expensive, repeated, long-term antibiotic therapy.

IDSA also strongly disagrees with the Attorney General's allegation that the Lyme disease guideline panel excluded competing viewpoints.

In fact, the panel offered an opportunity for other organizations and individuals to submit additional evidence and carefully considered all information provided.

In 2000, a single member of the panel voluntarily stopped participating. He was not removed from the panel, as the Attorney General has alleged.

Furthermore, all IDSA guidelines are subjected to a rigorous, multi-level review and approval process before they are published, which allows other clinicians who did not serve on the panel that developed the guidelines to ensure that the guidelines are relevant, accurate, useable, and balanced.

IDSA's guidelines--like all medical societies' guidelines--are voluntary. They are for the benefit of physicians seeking the best possible advice from experts in the field.

Medical societies do not have the authority or the desire to dictate to physicians how to practice medicine. Nor do they have the ability to dictate to insurance companies how to reimburse for services. No ties exist between IDSA and any insurance company.

The physicians who wrote IDSA's 2006 guidelines concluded that, for nearly all patients, a short course of antibiotics is an effective treatment for Lyme disease.

Studies have proven that long-term antibiotic treatment, which is usually given through a needle and a catheter, is ineffective, expensive, and potentially harmful.

The overuse of antibiotics also contributes to an important public health threat: the development of drug-resistant infections that are difficult if not impossible to treat.

``We recognize that medicine is always evolving, and we welcome the opportunity that the review panel provides to examine any new evidence and vet our earlier findings,'' said Dr. Poretz.

``We are pleased that under this agreement, the proper diagnosis and treatment for Lyme disease will be decided in a medical forum, not a courtroom.

We hope this special review of the guidelines will help quell the unfortunate controversy surrounding the treatment of Lyme disease and ensure that patients receive advice and treatment based on the best available scientific and medical evidence.''
----------------

GO RATE THE ISDA ARTICLE!!!!

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luvdogs
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They suck.
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Looking
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Doesn't look like anything will change anytime soon [Frown] .

*****

" Medical Validity of IDSA Guidelines Not Challenged

The main actions of the agreement include:

The current Lyme disease guidelines remain in effect. The medical and scientific basis of the 2006 guidelines remains in place and unchallenged.

IDSA will convene a review panel to determine whether the 2006 Lyme disease guidelines should be revised or updated.

Any proposed changes to the guidelines would require a supermajority vote of 75 percent of the panel.

IDSA strongly disagrees with the Attorney General's assertion that panel members had significant conflicts of interest."

*****

IDSA admits to nothing and only agreed to this review to get the AG off their back and if they change their guidelines after this "review", it will be a miracle. The phrase "the fox guarding the henhouse" comes to mind with this proposed review. [shake]

What a smug reply on the IDSA's part, I didn't think they would approach it with an open mind.

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Beverly
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[Frown] [Mad] [Mad]

Corrupt people don't just give up their power, it has to be taken away from them.

The IDSA makes me sick!

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Allie
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OK. I'm trying to put this in perspective.

First, what else could The AG have done? He isn't a doctor. He can't re-write the guidelines. He set out to find antitrust violations AND HE FOUND THEM.

Second, the IDSA is the IDSA. It is their job to make treatment guidelines. There is no way that we can take that away from them.

And of course they will come to their own defense!

I think the biggest gain here is not that there will be a new panel (yes to quote above it is like the fox guarding the hen house), but that it is open to the public!

There will be a lot of eyes watching every move, I think there must be some give. I need to think that!

It will take a long time for this to happen, everything like this does...

Please, I need this to be GREAT news!!

Allie

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docjen
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This all looks like IDSA spin to me. Of course they are going to come out with a statement like this! The alternative is coming out and saying what REALLY happened, and what the AG really found. If they agreed to settle without litigation, my suspicion is that the AG has more information than is currently in public discussion. I don't believe for a second that IDSA is selflessly falling on the proverbial sword to save its members a protracted legal battle. I am actually quite surprised that they acknowledged the fact that there would be substantial negative press about this.

The fact that the AG specifically calls for new guidelines to be drawn up EXCLUDING those members who were involved in the 2006 guidelines is very telling. And not to say a professional embarrassment for all those docs who were just publicly admonished.

I'm holding on to my glee!!!! It's still good news!

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Beverly
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Gee, I am so upset over posts about IDSA rebuttal!

Thank you for posting this thread also luvdogs. [Wink]

Okay, I hope this is GOOD news, and it helps Dr. J somehow.

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gwenb
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The IDSA are *** covering, as usual.

Here is the Attorney General's announcement. I find it pretty compelling.

Investigation reveals flawed Lyme disease guideline process

By Attorney General's office



IDSA agrees to reasses guidelines, install independent arbiter

Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.

The IDSA guidelines have sweeping and significant impacts on Lyme
disease medical care. They are commonly applied by insurance companies in restricting coverage for long-term antibiotic treatment or other medical care and also strongly influence physician treatment decisions.

Insurance companies have denied coverage for long-term antibiotic
treatment relying on these guidelines as justification. The guidelines are also widely cited for conclusions that chronic Lyme disease is nonexistent.

``This agreement vindicates my investigation -- finding undisclosed financial interests and forcing a reassessment of IDSA guidelines,'' Blumenthal said. ``My office uncovered undisclosed financial interests held by several of the most powerful IDSA panelists. The IDSA's guideline panel improperly ignored or minimized consideration of alternative medical opinion and evidence regarding chronic Lyme disease, potentially raising serious questions about whether the recommendations reflected all relevant science.

``The IDSA's Lyme guideline process lacked important procedural
safeguards requiring complete reevaluation of the 2006 Lyme disease guidelines -- in effect a comprehensive reassessment through a new panel. The new panel will accept and analyze all evidence, including divergent opinion. An independent neutral ombudsman -- expert in medical ethics and conflicts of interest, selected by both the IDSA and my office -- will assess the new panel for conflicts of interests and ensure its integrity.''

Blumenthal's findings include the following:

* The IDSA failed to conduct a conflicts of interest review for any of the panelists prior to their appointment to the 2006 Lyme
disease guideline panel;

* Subsequent disclosures demonstrate that several of the 2006
Lyme disease panelists had conflicts of interest;

* The IDSA failed to follow its own procedures for appointing the
2006 panel chairman and members, enabling the chairman, who
held a bias regarding the existence of chronic Lyme, to handpick
a likeminded panel without scrutiny by or formal approval of the
IDSA's oversight committee;

* The IDSA's 2000 and 2006 Lyme disease panels refused to accept
or meaningfully consider information regarding the existence of
chronic Lyme disease, once removing a panelist from the 2000
panel who dissented from the group's position on chronic Lyme
disease to achieve ``consensus'';

* The IDSA blocked appointment of scientists and physicians with
divergent views on chronic Lyme who sought to serve on the
2006 guidelines panel by informing them that the panel was fully
staffed, even though it was later expanded;

* The IDSA portrayed another medical association's Lyme disease
guidelines as corroborating its own when it knew that the two
panels shared several authors, including the chairmen of both
groups, and were working on guidelines at the same time. In
allowing its panelists to serve on both groups at the same time,
IDSA violated its own conflicts of interest policy.

IDSA has reached an agreement with Blumenthal's office calling for creation of a review panel to thoroughly scrutinize the 2006 Lyme disease guidelines and update or revise them if necessary. The panel -- comprised of individuals without conflicts of interest -- will comprehensively review medical and scientific evidence and hold a scientific hearing to provide a forum for additional evidence. It will then determine whether each recommendation in the 2006 Lyme disease guidelines is justified by the evidence or needs revision or updating.

Blumenthal added, ``The IDSA's 2006 Lyme disease guideline panel
undercut its credibility by allowing individuals with financial interests -- in drug companies, Lyme disease diagnostic tests, patents and consulting arrangements with insurance companies -- to exclude divergent medical evidence and opinion.

In today's healthcare system, clinical practice guidelines have tremendous influence on the marketing of medical services and products, insurance reimbursements and treatment decisions. As a result, medical societies that publish such guidelines have a legal and moral duty to use exacting safeguards and scientific standards.

``Our investigation was always about the IDSA's guidelines process -- not the science. IDSA should be recognized for its cooperation and agreement to address the serious concerns raised by my office. Our agreement with IDSA ensures that a new, conflicts-free panel will collect and review all pertinent information, reassess each recommendation and make necessary changes.

``This Action Plan -- incorporating a conflicts screen by an independent neutral expert and a public hearing to receive additional evidence -- can serve as a model for all medical organizations and societies that publish medical guidelines. This review should strengthen the public's confidence in such critical standards.''

THE GUIDELINE REVIEW PROCESS

Under its agreement with the Attorney General's Office, the IDSA will create a review panel of eight to 12 members, none of whom served on the 2006 IDSA guideline panel. The IDSA must conduct an open application process and consider all applicants.

The agreement calls for the ombudsman selected by Blumenthal's office and the IDSA to ensure that the review panel and its chairperson are free of conflicts of interest.

Blumenthal and IDSA agreed to appoint Dr. Howard A. Brody as the
ombudsman. Dr. Brody is a recognized expert and author on medical ethics and conflicts of interest and the director of the Institute for Medical Humanities at the University of Texas Medical Branch. Brody authored the book, ``Hooked: Ethics, the Medical Profession and the Pharmaceutical Industry.''

To assure that the review panel obtains divergent information, the panel will conduct an open scientific hearing at which it will hear scientific and medical presentations from interested parties. The agreement requires the hearing to be broadcast live to the public on the Internet via the IDSA's website. The Attorney General's Office, Dr. Brody and the review panel will together finalize the list of presenters at the hearing.

Once it has collected information from its review and open hearing, the panel will assess the information and determine whether the data and evidence supports each of the recommendations in the 2006 Lyme disease guidelines.

The panel will then vote on each recommendation in the IDSA's 2006 Lyme disease guidelines on whether it is supported by the scientific evidence. At least 75 percent of panel members must vote to sustain each recommendation or it will be revised.

Once the panel has acted on each recommendation, it will have three options: make no changes, modify the guidelines in part or replace them entirely. The panel's final report will be published on the IDSA's website.

ADDITIONAL FINDINGS OF BLUMENTHAL'S INVESTIGATION

IDSA convened panels in 2000 and 2006 to research and publish guidelines for the diagnosis and treatment of Lyme disease. Blumenthal's office found that the IDSA disregarded a 2000 panel member who argued that chronic and persistent Lyme disease exists. The 2000 panel pressured the panelist to conform to the group consensus and removed him as an author when he refused.

IDSA sought to portray a second set of Lyme disease guidelines issued by the American Academy of Neurology (AAN) as independently corroborating its findings. In fact, IDSA knew that the two panels shared key members, including the respective panel chairmen and were working on both sets of guidelines a the same time -- a violation of IDSA's conflicts of interest policy.

The resulting IDSA and AAN guidelines not only reached the same
conclusions regarding the non-existence of chronic Lyme disease, their reasoning at times used strikingly similar language. Both entities, for example, dubbed symptoms persisting after treatment ``Post-Lyme Syndrome'' and defined it the same way.

When IDSA learned of the improper links between its panel and the AAN's panel, instead of enforcing its conflict of interest policy, it aggressively sought the AAN's endorsement to ``strengthen'' its guidelines' impact. The AAN panel -- particularly members who also served on the IDSA panel -- worked equally hard to win AAN's backing of IDSA's conclusions.

The two entities sought to portray each other's guidelines as separate and independent when the facts call into question that contention.

The IDSA subsequently cited AAN's supposed independent corroboration of its findings as part of its attempts to defeat federal legislation to create a Lyme disease advisory committee and state legislation supporting antibiotic therapy for chronic Lyme disease.

In a step that the British Medical Journal deemed ``unusual,'' the IDSA included in its Lyme guidelines a statement calling them ``voluntary'' with ``the ultimate determination of their application to be made by the physician in light of each patient's individual circumstances.'' In fact, United Healthcare, Health Net, Blue Cross of California, Kaiser Foundation Health Plan and other insurers have used the guidelines as justification to deny reimbursement for long-term antibiotic treatment.

Blumenthal thanked members his office who worked on the investigation -- Assistant Attorney General Thomas Ryan, former Assistant Attorney General Steven Rutstein and Paralegal Lorraine Measer under the direction of Assistant Attorney General Michael Cole, Chief of the Attorney General's Antitrust Department.

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bejoy
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The fox may still be in the henhouse, but the watchdog is on the prowl!

Of course the IDSA will speak up in defense of their actions, until this all blows over.

Then perhaps they will make the changes they are required to make, and have it seem like their own great idea.

But we all will know better.

We had been sold out by the IDSA, but Blumenthal is our champion!

--------------------
bejoy!

"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson

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Keebler
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-

The IDSA letter, several posts up said this:


"It is important to note that IDSA's current guidelines remain in place and our advice to physicians and patients remains the same."

Huh ? Of course, that's just one of the confusing statements from them. Others have pointed out more, but this one really got to me.

-

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smadavid
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They're doing a good job of spinning the news.

IDSA:
Any proposed changes to the guidelines would require a supermajority vote of 75 percent of the panel.

AG:
The panel will then vote on each recommendation in the IDSA's 2006 Lyme disease guidelines on whether it is supported by the scientific evidence. At least 75 percent of panel members must vote to sustain each recommendation or it will be revised.

Best I can tell, it sounds like 75% approval will be required to either keep OR change the guidelines. In other words, the original guideline doesn't prevail by default if the proposed change doesn't get the support of the supermajority.

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Keebler
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-

For those passing this along. This is the link that takes you directly to the CT Attorney General's site. The press release is in posts above, but the link may be good to add for the original connection:


http://www.ct.gov/ag/cwp/view.asp?a=2795&q=414284

Connecticut Attorney General's Office
Press Release
Attorney General's Investigation Reveals Flawed Lyme Disease Guideline Process, IDSA Agrees To Reassess Guidelines, Install Independent Arbiter
May 1, 2008

Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.

- cont'd at link.


-

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lymeout
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Don't be bothered by the IDSA Spin! I am amazed at what Attorney General Blumenthal got out of this! Someone to monitor the selection process; most important - a public hearing of the science! Getting it out from behind closed doors is what we need. If the science is there, it will be heard.
My only fear now is how the media will present it. If they are as controlled as I think they are, we may see only the IDSA's take on this. We really do need to bombard the national papers with the Attorney General's press release. I have already sent it to the Washington Post.

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bettyg
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Originally posted by Dancer:


[QB] Connecticut Attorney General's Office
Press Release


Attorney General's Investigation Reveals Flawed Lyme Disease Guideline Process, IDSA Agrees To Reassess Guidelines, Install Independent Arbiter
May 1, 2008


Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.


The IDSA guidelines have sweeping and significant impacts on Lyme disease medical care.


They are commonly applied by insurance companies in restricting coverage for long-term antibiotic treatment or other medical care and also strongly influence physician treatment decisions.


Insurance companies have denied coverage for long-term antibiotic treatment relying on these guidelines as justification.


The guidelines are also widely cited for conclusions that chronic Lyme disease is nonexistent.
***********


"This agreement vindicates my investigation -- finding undisclosed financial interests and forcing a reassessment of IDSA guidelines," Blumenthal said.


"My office uncovered undisclosed financial interests held by several of the most powerful IDSA panelists.


The IDSA's guideline panel improperly ignored or minimized consideration of alternative medical opinion and evidence regarding chronic Lyme disease, potentially raising serious questions about whether the recommendations reflected all relevant science.


"The IDSA's Lyme guideline process lacked important procedural safeguards requiring complete reevaluation of the 2006 Lyme disease guidelines -- in effect a comprehensive reassessment through a new panel.


The new panel will accept and analyze all evidence, including divergent opinion.


An independent neutral ombudsman -- expert in medical ethics and conflicts of interest, selected by both the IDSA and my office -- will assess the new panel for conflicts of interests and ensure its integrity."


Blumenthal's findings include the following:


* The IDSA failed to conduct a conflicts of interest review for any of the panelists prior to their appointment to the 2006 Lyme disease guideline panel;


* Subsequent disclosures demonstrate that several of the 2006 Lyme disease panelists had conflicts of interest;
**********************


* The IDSA failed to follow its own procedures for appointing the 2006 panel chairman and members, enabling the chairman, who held a bias regarding the existence of chronic Lyme, to handpick a likeminded panel without scrutiny by or formal approval of the IDSA's oversight committee;


* The IDSA's 2000 and 2006 Lyme disease panels refused to accept or meaningfully consider information regarding the existence of chronic Lyme disease, once removing a panelist from the 2000 panel who dissented from the group's position on chronic Lyme disease to achieve "consensus";


* The IDSA blocked appointment of scientists and physicians with divergent views on chronic Lyme who sought to serve on the 2006 guidelines panel by informing them that the panel was fully staffed, even though it was later expanded;


* The IDSA portrayed another medical association's Lyme disease guidelines as corroborating its own when it knew that the two panels shared several authors, including the chairmen of both groups, and were working on guidelines at the same time.


In allowing its panelists to serve on both groups at the same time, IDSA violated its own conflicts of interest policy.


IDSA has reached an agreement with Blumenthal's office calling for creation of a review panel to thoroughly scrutinize the 2006 Lyme disease guidelines and update or revise them if necessary.


The panel -- comprised of individuals without conflicts of interest -- will comprehensively review medical and scientific evidence and hold a scientific hearing to provide a forum for additional evidence.


It will then determine whether each recommendation in the 2006 Lyme disease guidelines is justified by the evidence or needs revision or updating.


Blumenthal added, "The IDSA's 2006 Lyme disease guideline panel undercut its credibility by allowing individuals with financial interests -- in drug companies, Lyme disease diagnostic tests, patents and consulting arrangements with insurance companies -- to exclude divergent medical evidence and opinion.


In today's healthcare system, clinical practice guidelines have tremendous influence on the marketing of medical services and products, insurance reimbursements and treatment decisions.


As a result, medical societies that publish such guidelines have a legal and moral duty to use exacting safeguards and scientific standards.


"Our investigation was always about the IDSA's guidelines process -- not the science.


IDSA should be recognized for its cooperation and agreement to address the serious concerns raised by my office.


Our agreement with IDSA ensures that a new, conflicts-free panel will collect and review all pertinent information, reassess each recommendation and make necessary changes.


"This Action Plan -- incorporating a conflicts screen by an independent neutral expert and a public hearing to receive additional evidence -- can serve as a model for all medical organizations and societies that publish medical guidelines.


This review should strengthen the public's confidence in such critical standards."


THE GUIDELINE REVIEW PROCESS
*****************************


Under its agreement with the Attorney General's Office, the IDSA will create a review panel of eight to 12 members, none of whom served on the 2006 IDSA guideline panel.


The IDSA must conduct an open application process and consider all applicants.


The agreement calls for the ombudsman selected by Blumenthal's office and the IDSA to ensure that the review panel and its chairperson are free of conflicts of interest.


Blumenthal and IDSA agreed to appoint Dr. Howard A. Brody as the ombudsman.
***************************


Dr. Brody is a recognized expert and author on medical ethics and conflicts of interest and the director of the Institute for Medical Humanities at the University of Texas Medical Branch.


Brody authored the book, "Hooked: Ethics, the Medical Profession and the Pharmaceutical Industry."


To assure that the review panel obtains divergent information, the panel will conduct an open scientific hearing at which it will hear scientific and medical presentations from interested parties.


The agreement requires the hearing to be broadcast live to the public on the Internet via the IDSA's website.


The Attorney General's Office, Dr. Brody and the review panel will together finalize the list of presenters at the hearing.


Once it has collected information from its review and open hearing, the panel will assess the information and determine whether the data and evidence supports each of the recommendations in the 2006 Lyme disease guidelines.


The panel will then vote on each recommendation in the IDSA's 2006 Lyme disease guidelines on whether it is supported by the scientific evidence.


At least 75 percent of panel members must vote to sustain each recommendation or it will be revised.


Once the panel has acted on each recommendation, it will have three options:
------------------------------

make no changes,
modify the guidelines in part
or replace them entirely.


The panel's final report will be published on the IDSA's website.


ADDITIONAL FINDINGS OF BLUMENTHAL'S INVESTIGATION
***********************************************


IDSA convened panels in 2000 and 2006 to research and publish guidelines for the diagnosis and treatment of Lyme disease.


Blumenthal's office found that the IDSA disregarded a 2000 panel member who argued that chronic and persistent Lyme disease exists.


The 2000 panel pressured the panelist to conform to the group consensus and removed him as an author when he refused.


IDSA sought to portray a second set of Lyme disease guidelines issued by the American Academy of Neurology (AAN) as independently corroborating its findings.


In fact, IDSA knew that the two panels shared key members, including the respective panel chairmen and were working on both sets of guidelines a the same time -- a violation of IDSA's conflicts of interest policy.


The resulting IDSA and AAN guidelines not only reached the same conclusions regarding the non-existence of chronic Lyme disease, their reasoning at times used strikingly similar language.


Both entities, for example, dubbed symptoms persisting after treatment "Post-Lyme Syndrome" and defined it the same way.


When IDSA learned of the improper links between its panel and the AAN's panel, instead of enforcing its conflict of interest policy, it aggressively sought the AAN's endorsement to "strengthen" its guidelines' impact.


The AAN panel -- particularly members who also served on the IDSA panel -- worked equally hard to win AAN's backing of IDSA's conclusions.


The two entities sought to portray each other's guidelines as separate and independent when the facts call into question that contention.


The IDSA subsequently cited AAN's supposed independent corroboration of its findings as part of its attempts to defeat federal legislation to create a Lyme disease advisory committee and state legislation supporting antibiotic therapy for chronic Lyme disease.


In a step that the British Medical Journal deemed "unusual," the IDSA included in its Lyme guidelines a statement calling them "voluntary" with "the ultimate determination of their application to be made by the physician in light of each patient's individual circumstances."


In fact, United Healthcare, Health Net, Blue Cross of California, Kaiser Foundation Health Plan and other insurers have used the guidelines as justification to deny reimbursement for long-term antibiotic treatment.


Blumenthal thanked members his office who worked on the investigation --
**********************************


Assistant Attorney General Thomas Ryan,

former Assistant Attorney General Steven Rutstein

and Paralegal Lorraine Measer under the direction of Assistant Attorney General Michael Cole, Chief of the Attorney General's Antitrust Department.


View the entire IDSA agreement - (PDF-2,532KB)
*********************************************


Content Last Modified on 5/1/2008 1:51:01 PM

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Keebler
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yes, I hope they use the exact Atty. Gen's press release and not just pick up on other's news articles.

-

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bettyg
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allie, would you edit your post by clicking on paper/pencil and add this sentence at the top of your post here.

Bettyg has broken this up for neuro lymies and can be found on page 2; thanks allie! [Smile] xox


quote:
Originally posted by Allie:


Not to rain on the parade, but just got this from a colleague who is an IDSA member.


This is the link:



Dear IDSA Member:


As you may know, in November 2006 the Attorney General of Connecticut launched an antitrust investigation of the Society's clinical practice guidelines on Lyme disease.


The investigation reflects the controversy surrounding long-term antibiotic therapy, which IDSA does not recommend for this condition.


We are pleased to inform you that IDSA has reached an agreement with the Connecticut Attorney General that ends the investigation of the Society and its volunteer panel members and reaffirms the ability of IDSA to develop practice guidelines based on the best available evidence and widely accepted standards of care.


Our guidelines remain in place and continue to represent the best that science currently has to offer patients.



By reaching this agreement with the Attorney General, IDSA keeps issues related to the prevention, diagnosis, and treatment of Lyme disease in a medical forum where they belong, and out of a courtroom.


The agreement calls for a special review of the guidelines, detailed below, which we hope will quell the unfortunate controversy around the treatment of Lyme disease and ensure that patients receive advice and treatment based on the best available medical evidence.


There may be some negative press coverage in the short term, but we are working to make sure it is as fair as possible.
*********************


(Our press release is available online at http://www.idsociety.org/Content.aspx?id=11182 .)


In the long run, we expect this will blow over.


We firmly believe it is in the best interests of the Society, its volunteer panel members, and our patients to have this protracted, distracting, and expensive investigation behind us-particularly because the agreement itself is very favorable to IDSA.


Under the terms of the agreement, IDSA will convene a special review panel to conduct a comprehensive and up-to-date evaluation of the scientific literature, in order to determine whether the 2006 guidelines should be revised or updated.


As part of the review process, interested individuals will be invited to submit relevant information, and a public hearing will be held to receive additional information.


The review panel will consider all the evidence and make recommendations regarding whether the Lyme disease guidelines should be revised.


If the panel recommends revisions, they will be carried out in accordance with our normal procedures overseen by the IDSA Standards and Practice Guidelines Committee.


The agreement does not set a precedent for future guidelines.


From a medical perspective, we are confident that the 2006 guidelines are sound.


The Connecticut Attorney General's investigation of our guidelines questioned our process but never questioned the medical evidence.


Like many medical associations, IDSA is continuously working to improve the process by which we develop guidelines.


The panel members had no relevant conflicts of interest.


Recognizing the controversy surrounding Lyme disease, the panel carefully considered all information provided by other organizations and individuals.


Furthermore, the guidelines (like all IDSA guidelines) were subjected to a rigorous, multi-level review and approval process.


We stand by our 2006 guidelines panel, and we believe they reached the right conclusions.
*****************************************


While we were prepared to defend in court any claim that the Connecticut Attorney General might bring and were confident that we ultimately would have prevailed, we concluded that ending the investigation at this stage is in the best interests of IDSA, our members, and our patients.


The agreement recognizes that there was no legal wrongdoing.


It protects the Society and the volunteer members of the guidelines panel from the burdens of a protracted legal proceeding.


It avoids the uncertainty and expense of a continued investigation, which would likely cost IDSA hundreds of thousands of dollars more than the considerable resources already expended.


The Connecticut Attorney General is not imposing any fines or penalties and does not have a role in IDSA guidelines panels, on Lyme disease or any other topic.


Moreover, those who seek to undermine the credibility of our guidelines will no longer be able to use the stigmatizing phrase, "under investigation."


It is important to note that IDSA's current guidelines remain in place and our advice to physicians and patients remains the same.


We are confident that this special review will serve as a further endorsement of our evidence-based process to determine the best treatment for those who suffer from Lyme disease.


We sincerely hope it will bring a degree of closure to this controversy for our patients as well as for the Society, although we will be prepared to continue our education and advocacy efforts in this area.


We will weather whatever media storm may break over the announcement of the agreement.


In the end, our mission is to make patients well and help them avoid ineffective and potentially harmful treatments.


IDSA's guidelines on Lyme disease represent the best advice that medicine currently has to offer.
**********************************************


Please feel free to contact IDSA with any questions or concerns at [email protected]


Sincerely yours,



Donald Poretz, MD, FIDSA
President, Infectious Diseases Society of America

boy, talk about a HOG WASH STINKY REPORT! P U !! betty

we're going to have a field day with REBUTTALS to their letter and press release; let's go for it.


SEND THANK YOU EMAILS TO BLUMENTHAL!!! [group hug] [kiss]
**************************************

contact your local tv news seeing if they will have coverage and provide Blumenthal's report to them.


i agree; fax blumenthal's report to:

PALLONE, KENNEDY, AND DINGLE, etc.


HALLELEUH!! [bonk] [bow] this was a LONG time coming, but glorious news!!! yippee!

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Michelle M
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The Attorney General's press release tells it like it is!!

The IDSA's own B.S., minimizing, excuse for a press release shows readily it is trying to put a good face on this.

The AG's office is far more trusted to tell the truth.

Let the headlines RIP!!!

Michelle

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sixgoofykids
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I hardly believe if there were no compelling evidence against them that the IDSA would have agreed to the time and the expense of what they agreed to. Just doesn't make sense to me.

--------------------
sixgoofykids.blogspot.com

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jamescase20
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I am happy and mad that it took me 32 yrs of suffering, loosing the ability to go to college, get a good career, etc, now I am 41, too sick and weak to do anything but sit here and type or sleep all day, no income, no job, begging my parents to support me another week. While other people spread mistruths about treatments and diganosis to fatten there wallets at my expense. thank you CT.
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shazdancer
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Let them bluster all they want, the attorney general's release IS compelling. And their guidelines are only in effect until they are revised, which is what may happen under this review panel. Meantime, they have been weakened enough that I think many doctors would feel more empowered to act outside them, on behalf of their patients.

-- Shaz

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shazdancer
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[email protected]

I hope you'll join me in expressing your thanks to CT Attorney General Richard Blumenthal and his staff. They made history today.

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Geneal
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I am still excited about the news even with the IDSA's lame attempt

To cover their own behinds (so to speak).

In fact, I was asked to do an interview for our Parish (county for everyone else) newspaper.

They want to know my story about Lyme and my neighbors. Great opportunity to get out there.

I believe that I will bring a copy of these findings with me. [Smile]

Hugs,

Geneal

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Lymetoo
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quote:
Originally posted by smadavid:

IDSA:
Any proposed changes to the guidelines would require a supermajority vote of 75 percent of the panel.

NOT 75% of the membership

--------------------
--Lymetutu--
Opinions, not medical advice!

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smadavid
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quote:
Originally posted by Lymetoo:
quote:
Originally posted by smadavid:

IDSA:
Any proposed changes to the guidelines would require a supermajority vote of 75 percent of the panel.

NOT 75% of the membership
That's definitely a good thing... I was just trying to make the point that the existing guidelines are also subject to this 75% requirement, so dissenting opinion only needs to surpass 25% to force some sort of change for the better. Of course with only 8-12 members, it will likely come down to just one or two people.

[ 02. May 2008, 03:34 PM: Message edited by: smadavid ]

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Tracy9
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Docjen,
Thank you so much for your take on this. It restores the hope and glee.

[Big Grin]

--------------------
NO PM; CONTACT: [email protected]

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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Anneke
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CONGRATULATIONS EVERYBODY!!!!!!!!!!!!!!

Let us not allow the IDSA's rebuttal to dampen our spirits!! This is a time to CELEBRATE!! To scream, to cheer, to get drunk(:, to hug, to cry, to kiss. To tell all of our loved ones the outcome and the victory.

What an incredibly exciting and validating moment for all of us!! IMAGINE: The Attorney General of the state of CT. and ROUNDLY exposed the dirty laundry of the IDSA guideline panel! They are publicly SHAMED!!

Despite the bluster, the bravado, the cover up, and the BS in the IDSA's response - THEY KNOW THEY HAVE BEEN WHOMPED SOUNDLY!!

Ha! What a thrilling moment!! This annoucement, the release/showing of Under Our Skin, and Pamela Wintraub's book on the controvery coming out soon.

I will hope and pray the hearing of Dr. Jones bodes well for him. It is just so outrageous that someone of his stature and courage is being dragged thru the mud in this way.

Let's keep sending out cards of gratitude to those who worked on the investigation:

Assistant Att. Gen Thoma Ryan
former Assist. Att. Gen Steven Rutstein
Paralegal Lorraine Measer and
Assis. Att. Gen Michael Cole

Let's also keep our letters of encouragement going to Dr. Jones - and where it's possible, send our money too.

I love you guys!!

Anneke

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Larkspur
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I think anyway you look at it this is a huge victory for us - the IDSA can spin all they like, but the Attorney General's statement is powerful and clear.

I hope it helps to put an end to or prevent in the future some of this suffering we are all going through

--------------------
"We must be willing to get rid of
the life we've planned, so as to have the life that is waiting for us" - e.m. forster

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Tracy9
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Perhaps someone can post emails and addresses for all of them.

--------------------
NO PM; CONTACT: [email protected]

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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Anneke
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In reading the announcement by the Att. Gen, and then reading the response of the IDSA, I felt like I had just read two entirely different accounts.

Can someone whose brain is intact and alert point out the incongruities in the IDSA letter??

I want to understand this more, but I'm strapped work and energy and attention wise...

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canbravelyme
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How will they find panel members? From what I understand most of the IDSA is prejudiced against chronic Lyme.

Will they put ILADS members on the panel. I think one or 2 are ID doctors. That's not nearly 50%.

Is there anything we can do? Maybe write the arbiter.

What does it mean that there will be live video feed over the internet? Will that translate into us, the patients with this critical disease, having our say?

Best wishes,

--------------------
For medical advice related to Lyme disease, please see an ILADS physician.

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sparkle7
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This is good news but it will take a long time before it trickles down into treatment protocols for those who have insurance.

What about those who have lost everything & have no insurance? Or for people who don't want to take endless courses of antibiotics.

This decision doesn't really help me all that much. I don't think they will be reporting this on CNN or making the public any more aware of the dangers of Lyme.

The best thing would be to try to make the public more aware of Lyme to prevent people from going through all of this - to begin with.

In my opinion we need more accurate testing & greater public awareness, as well as, better treatment options.

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bettyg
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quote:
Originally posted by canbravelyme:

What does it mean that there will be live video feed over the internet? Will that translate into us, the patients with this critical disease, having our say?

can brave, live video feed over internet in my opinion only means we can WATCH THINGS LIVE as they happen !!


i'm sure we'd have no input; but we can see for ourselves what happens and who says what!!

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bettyg
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reposting luvdogs 1st post since on my pc it was all over and not formatted with a couple words on lines, etc. for anyone who got what i received...

Subject: Settlement Announced in Landmark Investigation of Lyme Disease Diagnosis and Treatment Guidelines


Please contact your papers and ask them to publish this press release.


FOR IMMEDIATE RELEASE
May 1, 2008

CONTACT:
Nicole Rodgers 202-822-5200


Settlement Announced in Landmark Investigation of Lyme Disease Diagnosis and Treatment Guidelines


Patients' Rights Groups Applaud Connecticut Attorney General Blumenthal's Settlement in Anti-trust Case Against Powerful Medical Society


Hartford, CT -

Patients' rights groups today hailed Connecticut Attorney General Blumenthal's announcement of a settlement in a landmark antitrust investigation into the Lyme treatment guidelines of the Infectious Diseases Society of America (IDSA).


``My office uncovered undisclosed financial interests held by several of the most powerful IDSA panelists,'' said Blumenthal.


``The IDSA's guideline panel improperly ignored, or minimized, consideration of alternative
medical opinion and evidence regarding chronic Lyme disease, potentially raising serious questions about whether the recommendations reflected all relevant science.''


The groundbreaking settlement announced today forces a complete review of the IDSA guidelines by a new panel free from conflicts of interest,
specifically excluding previous panel members.


This panel will consider a range of scientific evidence in a public forum broadcast live over the internet and will be overseen by a specialist in financial conflicts of interest in medicine.


``This settlement makes it clear that the IDSA guideline development process was corrupted by a commercially driven panel that excluded
evidence supporting longer term treatment of Lyme disease,'' said attorney Lorraine Johnson, Executive Director of the California Lyme Disease Association (CALDA).


``This settlement allows suppressed scientific viewpoints and evidence to be heard, and it is promising news for patients.''


This is the first-ever antitrust investigation against a medical society's guidelines development process.


``We congratulate Attorney General Blumenthal for exposing the IDSA's conflicts of interest and helping reduce the suffering of Lyme patients everywhere,'' said Pat Smith, president of the national Lyme Disease Association (LDA).


``The IDSA guidelines are dangerous for patients who suffer longer-term Lyme symptoms that do not fall within the IDSA's narrow disease definition.''


The IDSA guidelines are treated as mandatory within the medical community.


More than 50 physicians who use longer-term treatment approaches have been investigated or sanctioned by state medical boards.


The guidelines can also result in financial problems for patients, since insurance companies
refuse to reimburse for longer-term treatment and pharmacies may refuse to fill prescriptions.


The majority of individuals involved in the IDSA guidelines development process held direct or indirect commercial interests related to Lyme vaccines, patents, and/or test kits, and did not take the opinions or experiences of the competing Lyme groups into account.


While the announcement of a settlement comes as a huge relief to suffering Lyme patients, the case has much broader implications for a health care system that often contends with conflicts-of-interest in guideline processes:

guidelines which are often used by insurance companies to limit diagnosis and treatment options.


``Today's settlement marks an important victory for all patients who suffer Lyme disease, but it is also a victory for anyone concerned about health care,'' said Johnson.

``Commercially driven guidelines that limit patient treatment options are a major issue today in health care, and this decision marks an important step towards addressing it.''

The national Lyme Disease Association, (LDA), CALDA, and Time for Lyme are non-profit organizations that were founded by individuals who had personal experience with Lyme disease, in order to address the lack of education and support services available for this newly emerging infection.

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sometimesdilly
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((Anneke- i'm working on doing just that- comparing the IDSA's version against Blumenthal's, ans with any luck can post it tomorrow AM.))

For me, one part of the bottom line synopsis is this:

1-- it is simply a lie that the IDSA "voluntarily" agreed to revisit their guidelines. that is hogwash.

Blumenthal seems to have found enough factual evidence about the guideline writers' conflicts of interest to make the IDSA squirm AND, when you read the details, Blumenthal found and flashed great big light --

ON THE PANEL'S FAILURE TO ABIDE BY THE IDSA'S OWN INTERNAL RULES/SAFEGUARDS about the process of formulating guidelines.

their failure to do so has the potential to blemish the ISDA's credibility, not just their ethically and scientifically perverse stance on Lyme.

Of course the IDSA is not ceding the battle. of course they will do their best to stack the new panel with naysayers,and they will probably succeed, as Blumenthal does not have the authority to co-name the panel.

BUT- the IDSA Lyme-deniers have NEVER been forced to make their scientific "case" in public and they NEVER been forced to acknowledge the science that contradicts their willful ignorance.

it was a huge victory for all of us that Blumenthal has made sure there are no rocks at hand for the next panel to hide under.

more tomorrow...

be of good cheer-- this IS good news. IDSA has demonstrated time and again that the can't be believed on all matters Lyme- so no point in listening to them now...

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Tracy9
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quote:
Originally posted by sparkle7:
This is good news but it will take a long time before it trickles down into treatment protocols for those who have insurance.

What about those who have lost everything & have no insurance? Or for people who don't want to take endless courses of antibiotics.

This decision doesn't really help me all that much. I don't think they will be reporting this on CNN or making the public any more aware of the dangers of Lyme.

The best thing would be to try to make the public more aware of Lyme to prevent people from going through all of this - to begin with.

In my opinion we need more accurate testing & greater public awareness, as well as, better treatment options.

Sparkle7,

I'm sorry you don't feel this decision helps "YOU" all that much.

Thankfully, it helps the rest of the Lyme community, and is by far the best thing to happen to us alongside "Under Our Skin."

Sometimes you just gotta look past your own needs and see the greater good, and there is LOTS of greater good here.

But if you'd rather not, there's a pity pot somewhere with your name on it, I'm sure.

--------------------
NO PM; CONTACT: [email protected]

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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daise
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Everyone,

[woohoo]

I've made it easy for all to send copies of both CALDA's announcement and CT Attorney General Blumenthal's office announcement to three politicians at:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=065982


daise [Smile]

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daise
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(Happy flooding!)
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sometimesdilly
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daise- [Smile]
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METALLlC BLUE
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The IDSA is filled with a bunch of pompous, law-breaking short sighted **** heads. Do you know how they became short sighted **** heads? Because I can't imagine anyone would be able to see too far when they wall of their own retum is hindering their view.

They got owned, AG got my letter. And now these punks as *****es will get what's coming to them.

--------------------
I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.

E-mail: [email protected]

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jamescase20
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you got this started? wow.
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lymeout
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The Wall Street Journal covered this in their Marketplace section. I wish I could post it here, but we get the print journal. The online version is just an abstract. Couldn't find anything in the Washington Post.

What about other papers, TV newscasts? I think we should pay attention to the objectivity of the coverage and note which media are biased, which are not. But we do need to keep in mind that both sides have to be reported.

I would love to see any articles/links to broadcasts, etc posted here so that we can assess.

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jamescase20
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Yeah, where is the media? I asked cnn to post this, nope they didnt. Sad. IDK, no ones talking. we'll see.
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davidx
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Here's the WSJ article from today's paper:

Medical Society Settles
In Lyme-Disease Dispute
By PHILIP SHISHKIN
May 2, 2008; Page B4

The Connecticut Attorney General accused a major medical society of harboring conflicts of interest and unveiled a settlement requiring the group to review its practices.

The settlement ended the state's inquiry that was focused on the way the Infectious Diseases Society of America set nonbinding but influential guidelines for treating Lyme disease. The ailment is commonly spread through tick bites and characterized by headaches, fatigue, fever and skin rashes.

In announcing the settlement, Attorney General Richard Blumenthal criticized the society for "allowing individuals with financial interests -- in drug companies, Lyme disease diagnostic tests, patents and consulting arrangements with insurance companies -- to exclude divergent medical evidence and opinion" from its deliberations.

The society denied wrongdoing and said in a statement that it agreed to a settlement "in an effort to clear the air." Society President Donald Poretz said "there was no obvious conflict of interest" on the 14-person Lyme-disease committee and that the society had appropriate vetting procedures in place. Lyme disease has generated controversy because some doctors and patient advocates believe it is a chronic condition best treated by antibiotics.

The settlement was the latest to focus on alleged conflicts at medical societies that set treatment guidelines. In 2006, a guidelines panel of the National Kidney Foundation came under fire for its financial ties to makers of the drug erythropoietin. The panel had recommended more-aggressive use of the drug in treating anemia in kidney patients, which turned out to raise the risks of heart failure.

The Infectious Diseases Society and some other experts say there is no evidence to prove that Lyme is a chronic condition and caution against the prolonged use of antibiotics. Instead, the society recommends other treatments, such as a short course of oral antibiotics.

Under the settlement agreement with the attorney general's office, the society agreed to review the guidelines and appoint a neutral ombudsman to assess this review panel for conflicts of interest. Dr. Poretz said the review doesn't necessarily mean the guidelines will change. "We are glad this has ended," Dr. Poretz said.

Mr. Blumenthal declined to elaborate on how the existing guidelines may have benefited manufacturers of drugs or diagnostic kits. He launched the investigation under antitrust statutes, arguing that the medical society monopolized treatment standards.

In a 2007 article published in the New England Journal of Medicine, Gary Wormser, chairman of the society's Lyme-disease panel, disclosed receiving research grants from several makers of diagnostic tests for the condition, including Bio-Rad Laboratories Inc. of Hercules, Calif. Dr. Wormser, of the New York Medical College in Valhalla, N.Y., couldn't be reached for comment. Bio-Rad declined to comment. Steve Baragona, a spokesman for the society, said the panel recommended testing, but no specific manufacturer.

The society added in a statement Thursday that the panel members "recommended against expensive repeated, long-term antibiotic therapy."

Proponents of such therapy hope a review of society guidelines would allow them to make an argument for long-term antibiotic care.

In its summary of the investigation, the attorney general's office said insurance companies have relied on the 2006 guidelines to deny coverage for long-term antibiotic treatments. The attorney general also said that the society sought to purge from its ranks contrarian views, and in 2000 removed a panelist who held dissenting views.

The society denied this, saying the scientist left voluntarily and that its open to other opinions, provided they are based on solid science.

Write to Philip Shishkin at [email protected]

--------------------
Same nightmare, different day!

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TerryK
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For the details of the agreement between the Attorney General and the IDSA see
http://www.ct.gov/ag/lib/ag/health/idsaagreement.pdf

start on page 7

some good things -

not required to be an IDSA member

at least one doctor with clinical experience in treating lyme disease

and some others...

Looks like the conflict of interest definition is fairly limited. Seems like you could have the best friend of Steere on the panel. [Eek!]

I sent a letter of thanks to Blumenthal. At least someone cared enough to do something about the IDSA and their underhanded tactics.

Terry

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savebabe
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[bow] [woohoo] [woohoo]
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sometimesdilly
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Below is a comparison of the press releases issued by AG Blumenthal and by the IDSA.


COMPARISON OF IDSA'S PRESS RELEASE VS. BLUMENTHAL'S PRESS RELEASE
________________________________________
I. IDSA: " Medical Validity of IDSA Guidelines Not Challenged"


IDSA- " Under the agreement (settlement with AG Blumental ), the guidelines remain in effect;

but in an effort to clear the air, IDSA is voluntarily agreeing to an extra step: a one-time special review of the Lyme disease guidelines."


REALITY: Voluntarily agreed? Untrue.

Having the guidelines reviewed was a fundamental condition of the settlement

The IDSA is technically correct that the medical validity of the guidelines was not directly challenged by Blumenthal's office.

Of course not. Blumenthal s office does not have legal standing to directly challenge the guideline's medical validity.

As Blumenthal states, " Our investigation was always about the IDSA's guidelines process -- not the science."

However, central to the settlement is the convening of a panel that WILL be responsible for challenging the medical validity of the guidelines.

from Blumenthal: "(the panel will) thoroughly scrutinize the 2006 Lyme disease guidelines and update or revise them if necessary.

The panel -- comprised of individuals without conflicts of interest -- will comprehensively review medical and scientific evidence and hold a scientific hearing to provide a forum for additional evidence.

It will then determine whether each recommendation in the 2006 Lyme disease guidelines is justified by the evidence or needs revision or updating."

------------------------------
In other words, Blumenthal's intent is precisely to force the IDSA to make its scientific/medical case in public and to force the IDSA to acknowledge and respond to the body of evidence they have chosen to ignore.

II. THE MAIN ACTIONS OF THE AGREEMENT INCLUDE:

I. IDSA version: "Complete resolution of the Attorney General's investigations, issues, and potential claims and causes of action against IDSA and its volunteer panel members.

REALITY: That appears to be true.

2. IDSA: " The current Lyme disease guidelines remain in effect. The medical and scientific basis of the 2006 guidelines remains in place and unchallenged."

REALITY: a major distortion of the truth. See above.

3. IDSA version: "IDSA will convene a review panel to determine whether the 2006 Lyme disease guidelines should be revised or updated.

IDSA CONTINUES- " Howard Brody, MD, PhD, who has been jointly selected by the Office of the Attorney General and IDSA, will serve as an ombudsman who will have a limited role that will focus on screening potential conflicts of interest.

The ombudsman will not be involved in the operation of the review panel. Any proposed changes to the guidelines would require a supermajority vote of 75 percent of the panel."

REALITY: says Blumenthal: " Under its agreement with the Attorney General's Office, the IDSA will create a review panel of eight to 12 members,

*****none of whom served on the 2006 IDSA guideline panel. ******

******The IDSA must conduct an open application process and consider all applicants.******

The panel -- comprised of individuals without conflicts of interest -- will comprehensively review medical and scientific evidence and hold a scientific hearing to provide a forum for additional evidence.

It will then determine whether each recommendation in the 2006 Lyme disease guidelines is justified by the evidence or needs revision or updating."

NOTE: The list of presenters at this scientific hearing must be agreed upon by Blumenthal's office, Dr. Brody (ombudsman) and the IDSA.

4. (ON CONFLICT OF INTEREST)

the IDSA : "..strongly disagrees with the Attorney General's assertion that panel members had significant conflicts of interest."

IDSA: " Panel members had no financial interests that would have affected, or been affected by, recommendations in the guidelines."

REALITY: " The IDSA failed to conduct a conflicts of interest review for any of the panelists prior to their appointment to the 2006 Lyme
disease guideline panel;"

(note: A violation of professional ethics)

* Subsequent disclosures demonstrate that several of the 2006 Lyme disease panelists had conflicts of interest;"


Blumenthal : ``The IDSA's 2006 Lyme disease guideline panel undercut its credibility by allowing individuals with financial interests --

in drug companies,
Lyme disease diagnostic tests,
patents
and consulting arrangements with insurance companies -- to exclude divergent medical evidence and opinion.

5. (ON THE EXCLUSION OF COMPETING VIEWPOINTS)

"the IDSA also strongly disagrees with the Attorney General's allegation that the Lyme disease guideline panel excluded competing viewpoints."

IDSA: .." the panel offered an opportunity for other organizations and individuals to submit additional evidence and carefully considered all information provided.

In 2000, a single member of the panel voluntarily stopped participating. He was not removed from the panel, as the Attorney General has alleged.

Furthermore, all IDSA guidelines are subjected to a rigorous, multi-level review and approval process before they are published, which allows other clinicians who did not serve on the panel that developed the guidelines to ensure that the guidelines are relevant, accurate, useable, and balanced."

REALITY: Blumenthal: " The IDSA failed to follow its own procedures for appointing the 2006 panel chairman and members, enabling the chairman, who
held a bias regarding the existence of chronic Lyme, to handpick a likeminded panel without scrutiny by or formal approval of the IDSA's oversight committee;

The IDSA's 2000 and 2006 Lyme disease panels refused to accept or meaningfully consider information regarding the existence of
chronic Lyme disease, once removing a panelist from the 2000 panel who dissented from the group's position on chronic Lyme disease to achieve ``consensus'';

* The IDSA blocked appointment of scientists and physicians with divergent views on chronic Lyme who sought to serve on the 2006 guidelines panel by informing them that the panel was fully
staffed, even though it was later expanded;

* The IDSA portrayed another medical association's Lyme disease guidelines as corroborating its own when it knew that the two panels shared several authors, including the chairmen of both
groups, and were working on guidelines at the same time.

In allowing its panelists to serve on both groups at the same time, IDSA violated its own conflicts of interest policy.


6. (ON VOLUNTARY GUIDELINES):

IDSA: "IDSA's guidelines--like all medical societies' guidelines--are voluntary. They are for the benefit of physicians seeking the best possible advice from experts in the field.

Medical societies do not have the authority or the desire to dictate to physicians how to practice medicine.

Nor do they have the ability to dictate to insurance companies how to reimburse for services.

No ties exist between IDSA and any insurance company."


REALITY: Blumenthal:

"... clinical practice guidelines have tremendous influence on the marketing of medical services and products, insurance reimbursements and treatment decisions.

As a result, medical societies that publish such guidelines have a legal and moral duty to use exacting safeguards and scientific standards."
------------------------------

NOTING AN ODDITY-

the IDSA says:

"The physicians who wrote IDSA's 2006 guidelines concluded that, for nearly all patients, a short course of antibiotics is an effective treatment for Lyme disease.

"Studies have proven that long-term antibiotic treatment, which is usually given through a needle and a catheter, is ineffective, expensive, and potentially harmful. "

REALITY- Long term abx are USUALLY given through a needle and catheter? Huh?

[ 03. May 2008, 11:42 AM: Message edited by: sometimesdilly ]

Posts: 2505 | From lost in the maze | Registered: Aug 2006  |  IP: Logged | Report this post to a Moderator
savebabe
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