IDSA has announced its list of panelists

General or non-medical topics with information and discussion related to Lyme disease and other tick-borne diseases.
savieria
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Re: IDSA has announced its list of panelists

Post by savieria » Sat 31 Jan 2009 22:08

Thank you Rita and Sir Real for terrific comments, insight and for posting the actual agreement on Blumenthal's website. It would appear few have bothered to read it. Another ommision seems to be a lack of understanding about how such agreements are created. This agreement is a good deal for the IDSA. Who do the "Lyme Leaders" think hammered this out? We know Blumenthal's team on that side, but have you ever seen a reference to the IDSA legal counsel? Do they think IDSA used brilliant in-house counsel? Not for this type of deal they didn't. Not only do they have a world-class law firm working for them the entire stretch of this review process, they will also be there to assure the best outcome for the Society should their client ever be mirred in a Congressional investigation. Know your adversaries.

These firms have enormous talent, power and can likely dance circles around the LDA. These are the people in the know. Not only that they are accutely aware of the increased activism by state attorneys general and are prepared. Is our side aware of this? Do we have any talent to match this? I am afraid not. I have never seen a single reference to this formidable obstacle. Can someone provide one? If not, what does that say about the "Lyme Lleaders" who claim to be informed and are preparing action plans on behalf of the rest of us?

Maintain esprit,
Savie

rlstanley
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Re: IDSA has announced its list of panelists

Post by rlstanley » Sun 1 Feb 2009 17:56

.
To quote Claudia from another thread: http://www.lymeneteurope.org/forum/view ... 0&start=20
...there is another very possible result: the Blumenthal investigation outcome and settlement could have a significant long-term effect in squashing any further changes beneficial to the Lyme community for a long, long time to come.
I'd say that is a very viable outcome. Just like in the Klempner fiasco, the ramifications of this political exercise won't be easily erased no matter how many petitions are signed, angry letters are written, phone calls are made, or attempts to silence dissenters with bully tactics are instituted.
.

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Spanky
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Re: IDSA has announced its list of panelists

Post by Spanky » Sun 1 Feb 2009 18:09

OneGuest:
Perhaps also, L. Johnson is not revealing her full hand.
You mean that perhaps Ms. Johnson is only feigning a deficit in reading comprehension skills? In order to lure the enemies of CALDA into some sense of false security?

Yeah. Good plan.

Seems to me that the language of the Agreement is fairly clear in its "guidance" to Brody.

What is very unclear is why Ms. Johnson would try to interpret that language in the way she has chosen. And, why she would see fit to air these comments on the internet...especially since it is the AG's responsibility to see to it that the terms of the Agreement are carried out.

By attacking Brody's read of the thing...she seems to be unaware that she is indirectly criticizing Blumenthal's failure to properly oversee the enforcement of the Agreement.

Why don't you ask her?

I have had very bad luck in the past with my attempts to get my questions answered.

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Spanky
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Re: IDSA has announced its list of panelists

Post by Spanky » Sun 1 Feb 2009 18:29

"savieria":Thank you Rita and Sir Real for terrific comments, insight and for posting the actual agreement on Blumenthal's website.


Thanks for that, but in my opinion, the real thanks are due to the originator of this site, because this discussion wouldn't have lasted five minutes before it was pulled, disappeared elsewhere.

These firms have enormous talent, power and can likely dance circles around the LDA. These are the people in the know. Not only that they are accutely aware of the increased activism by state attorneys general and are prepared. Is our side aware of this? Do we have any talent to match this? I am afraid not. I have never seen a single reference to this formidable obstacle. Can someone provide one? If not, what does that say about the "Lyme Lleaders" who claim to be informed and are preparing action plans on behalf of the rest of us?
For what it is worth, my sense has always been that the possible legal avenues are extremely limited, so I don't think this is, really, something to be terribly concerned about.

The legal system is just not capable of deciding issues of scientific factual dispute. You simply cannot submit the question of whether longterm symptoms are due to persistent and recurring infection, or not, to a judge or jury, and have some sort of accepted, definitive answer that is going to be accepted by the scientific/medical community. It's just not, in my opinion, a justiciable issue.

So, from the start, you have to have a sense of what the proper forum, venue, is for the issue, I think.

But to prevail in a legal setting also, you would need convincing scientific evidence of the underlying principle.

And the irony there, the "Catch-22", is that if you have that evidence, it would be generally accepted and you wouldn't need to be in Court in the first place.

In my opinion, the run that was taken with the antitrust thing was an extremely bad idea.

And you now see that the result will be that the disputed IDSA Guidelines will undoubtedly be affirmed by a neutral panel. So, not only not an "important victory"...but arguably a major defeat...notwithstanding the attempt to spin that to the contrary.

Not to say that the lawyers do not have a role in this, though, personally, I am encouraged by and applaud the efforts of those in DC who managed to arrange the Congressional briefing, and I, personally, think that is the appropriate route, a less confrontational way of raising awareness and seeking redress in the appropriate forums.
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Spanky
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Re: IDSA has announced its list of panelists

Post by Spanky » Sun 1 Feb 2009 18:39

"rlstanley"].
To quote Claudia from another thread: http://www.lymeneteurope.org/forum/view ... 0&start=20
...there is another very possible result: the Blumenthal investigation outcome and settlement could have a significant long-term effect in squashing any further changes beneficial to the Lyme community for a long, long time to come.
I'd say that is a very viable outcome. Just like in the Klempner fiasco, the ramifications of this political exercise won't be easily erased no matter how many petitions are signed, angry letters are written, phone calls are made, or attempts to silence dissenters with bully tactics are instituted.
.
[/quote]

Yes.

Absolutely.

Any critique or criticism of the IDSA Guidelines will now be extremely difficult, if not impossible, once they have been evaluated and ratified by an independent board under conditions agreed to by the AG of Connecticut.

This is, I think, meant to close the door on the issue.

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LymeEnigma
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Re: IDSA has announced its list of panelists

Post by LymeEnigma » Mon 2 Feb 2009 0:53

That is what it looks like....

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Spanky
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Re: IDSA has announced its list of panelists

Post by Spanky » Mon 2 Feb 2009 17:10

"LymeEnigma"]That is what it looks like....
And think of the implications in terms of attempts to pass legislation that protects "LLMD"s from treating beyond the limits of these Guidelines when they have been independently affirmed by a panel under the terms and conditions set by the Connecticut AG. They aren't going to be abvailable over the internet any longer...as they will only be chiseled in stone.

Another lesson in the book entitled: "be careful what you ask for", I guess.

And...I happened to notice a portion of a post at Lymenet where the poster said something to the effect that 'all the IDSA needs is to get this 3/4 in their pocket'...or, words to that effect.

No. Not as I understand it. That 3/4 rule is what it takes to overturn a previous recommendation of the IDSA, as I read it. That is the "burden of proof", in a sense. The mountain that must be climbed. This is a case where the minority can rule, block any change.

Another way to look at it is that you only need 3 or 4 'no' votes to block any change whatever...and given the nature of the subject...any bets? How about it?

Anyone want to put some $$ on this?

I have a crystal ball...and to quote the (now) former Governor of the State of Illinois..."it's a bleeping valauable thing". :lol:

rlstanley
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Re: IDSA has announced its list of panelists

Post by rlstanley » Mon 2 Feb 2009 17:54

SR write:
That 3/4 rule is what it takes to overturn a previous recommendation of the IDSA, as I read it. That is the "burden of proof", in a sense. The mountain that must be climbed. This is a case where the minority can rule, block any change.
From IDSA news release http://www.idsociety.org/Content.aspx?id=11182
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.
From Agreement Between The AG of CT & IDSA (Exhibit 1) http://www.ct.gov/ag/lib/ag/health/idsaagreement.pdf , page 10, 11 :

4.Voting

a. The Review Panel shall strive to achieve consensus.

b. It is the responsibility of the Review Panel Chairperson to manage any vote on any key finding or recommendation and report such vote to the Ombudsman. The name and vote of each Review Panel member must be maintained for the record, but will not be made public, though the overall vote of the Review Panel on the final recommendation(s) shall be made public.

c. Panel determinations/recommendations shall require a supermajority vote of 75% or more of the total voting members.

5. Recommendation

a. Based on its weighing of evidence, the Review Panel shall recommend one of the following three options:

i. That no changes to the 2006 Lyme disease guidelines are necessary.

ii. That there is a need for sectional revision of the 2006 Lyme disease guideline. In this instance the Review Panel shall make proposals for those revisions, which shall be considered and implemented by the SPGC.

iii. That a complete rewriting of the 2006 Lyme disease guideline is required. If the Review Panel determines that such a rewriting of the Lyme disease guideline is warranted, the IDSA shall convene a guideline panel consistent with the terms of this Action Plan and the and the IDSA's Handbook on Clinical Practice Guideline Development.

6. The recommendation(s) of the Review Panel shall be binding upon the IDSA.


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Spanky
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Re: IDSA has announced its list of panelists

Post by Spanky » Mon 2 Feb 2009 22:02

rlstanley"

Any proposed changes to the guidelines would require a supermajority vote of 75 percent of the panel.
Yes. (And thanks, again, for posting the actual requirements).

And for me, to keep that 3/4 requirement in proper perspective, remember that the normal supermajority requirement, to amend Committee rules under Robert's Rules, or to overturn a veto, is usually 2/3, or 66 2/3%, whereas here, the agreed upon threshold was 3/4, or 75%.

A super-super majority.

So, it sure doesn't look like an "important victory" to me. I don't get it. Wish someone would explain it.

But I don't understand a lot of what is being said in regard to this.

For instance, here is an excerpt form the "Lyme Policy WonK" blog, from a post dealing with Ms. Johnson's insistence that an antitirust action was appropriate and applicable:
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"While we often don’t think of medical professional as being competitors, they are".
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What Ms. Johnson is talking about there, is not a competition within the marketplace of ideas...a scientific dispute over the correct and appropriate treatment of Lyme disease...but she is speaking of a traditional antitrust economic marketplace competition and analysis...and analogizing the IDSA and ILADS organizations as being two alternate competing providers of goods and services, competitors for market share, between whom consumers should be free to make choices.

And regardless, of the merits (or lack thereof) of this assertion ...

...you would think that even she would recognize that she cannot, out of one side of her mouth, argue that they are "marketplace" competitors on equal footing...

...and then turn around, and out of the other corner of her mouth, insist that one marketplace competitor be excluded from panel participation for conflict of interest and complain when the other competitor ("our doctors") is then also excluded from participating on the panel...like this:

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"Attorney Lorraine Johnson of the California Lyme Disease Association points out "The problem is that guidelines conclusions generally reflect panel composition. That is why it is critical that a panel be balanced and include different points of view. Excluding the point of view of physicians who treat chronic Lyme disease makes no sense and biases this panel."
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Seems to me that her very own insistence of the antitrust marketplace competition absolutely requires, dictates this exclusion under ethical considerations and notions of fundamental fairness.

What's 'good for the goose', you know...

Can't have it both ways.
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Spanky
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Re: IDSA has announced its list of panelists

Post by Spanky » Mon 2 Feb 2009 22:36

And see:

http://www.emediawire.com/releases/2009 ... 941044.htm

And there are two simple answers for their concerns:

1. If they are indeed, "market competitors" as CALDA, through Lorraine Johnson, JD, MBA, has previously asserted, then they have to be excluded. Under normal legal considerations, in court, she would probably be estopped (barred, forbidden) from even making such an argument.

2. They should take their concerns up with Blumenthal. There is a legal mechanism in place, an Agreement brought about on their behalf by the CT AG, and they should follow and respect the terms and conditions of that Agreement, which, they, themselves accepted and labeled as an "important victory".


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Patient groups voiced concern and disappointment about the new Infectious Diseases Society of America (IDSA) Lyme disease guidelines' panel, which excludes physicians who treat patients with chronic Lyme disease.

Greenwich, CT (PRWEB) February 2, 2009 -- Patient groups voiced concern and disappointment about the new Infectious Diseases Society of America (IDSA) Lyme disease guidelines' panel, which excludes physicians who treat patients with chronic Lyme disease. In May 2008, the Connecticut Attorney General found the IDSA Lyme disease treatment guidelines' panel had conflicts of interest, engaged in exclusionary conduct, and suppressed scientific evidence. The investigation resulted in a settlement forcing the IDSA to reconstitute a balanced panel free of conflicts of interest under the oversight of an ombudsman to monitor conflicts of interest. No input from patients or treating physicians was permitted in selection.

"This situation is déja vu all over again," said national Lyme Disease Association president Pat Smith about the newly created guidelines' panel. "All Lyme disease treating physicians who applied for a seat were denied, based on having a "conflict" if they made over $10,000 treating Lyme disease. They have confused helping patients get better with 'real' competing conflicts such as interests in testing and vaccines, and relationships with insurers−a profile found in the original panel. Physicians who treat understand what makes patients well."

Attorney Lorraine Johnson of the California Lyme Disease Association points out "The problem is that guidelines conclusions generally reflect panel composition. That is why it is critical that a panel be balanced and include different points of view. Excluding the point of view of physicians who treat chronic Lyme disease makes no sense and biases this panel."

The current IDSA guidelines recommend against treating Lyme disease more than a few weeks, against using specific types of antibiotics, against alternative treatments and even supplements. The guidelines are so restrictive that physicians are not permitted to use clinical judgment in diagnosing or treating Lyme patients. The new panel will review controversial recommendations in the guidelines to determine whether there is sufficient scientific support for the recommendation.

According to Diane Blanchard, Co-President of Time for Lyme in Connecticut, "Treating physicians must be allowed to make clinical judgments about their patients' conditions due to the complexity of tick-borne diseases, and there are a number of physicians out there nationwide who are knowledgeable enough to recognize the effects of coinfections on diagnosis and treatment. Some have been treating for over 10-20 years and have tens of thousands of hours of experience seeing patients; yet, these physicians were not selected."

US Congressman Christopher Smith (NJ) co-chair of the House Lyme Disease Caucus, told the patient groups "The Settlement Agreement of the IDSA requires a balanced panel with a variety of experiences, including clinical experience in treating patients with Lyme disease. I share concerns raised about exclusion of physicians who treat persisting Lyme and the composition of the panel. I know I am joined by colleagues in Congress in the hope and expectation that the reassessment of the Lyme disease guidelines will be conducted with the highest levels of integrity and expertise. Nothing less will protect the rights and welfare of patients. We will continue to monitor this ongoing process."

The three groups are still hopeful, however, that the panel will take their responsibility seriously, since they have within their grasp the chance to improve the diagnosis and treatment for Lyme patients everywhere. Patients are counting on them to ensure that the weight of the science is evaluated fairly, which would be reflected in new standards that provide help for thousands of children and their families.

The groups feel patients should be provided with treatment options, including the use of long term antibiotics, to fight the disease, which has a disability equivalent to that of congestive heart failure. As in other areas where science is emerging, patients should have choices, and the exercise of clinical judgment by treating physicians should be encouraged. Studies of chronic Lyme disease show a failure rate of 26% to 50%, using the short-term antibiotic approaches currently advocated by IDSA.

ABOUT: The national Lyme Disease Association, (LymeDiseaseAssociation.org), the California Lyme Disease Association (http://www.lymedisease.org), and Time for Lyme (http://www.timeforlyme.org) 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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