IDSA vs ILADS – Honesty or Trickery?

We all know that the IDSA has an irrational bent against the ILADS Lyme disease treatment guidelines. So, after the Connecticut Attorney General suied IDSA and required them to review their guidelines (which state that chronic Lyme disease is not a real medical condition), we’ve all been left wondering… will IDSA really give the guidelines an honest look, or will they just jump through the hoops to get millions of sick people off their back? You decide…Here are a few recent juxtaposed news articles which provide some insight:

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.

– –

Lyme Organizations: New IDSA Guidelines Panel, Unbalanced & Biased;
Congressman and Patient Groups Voice Concerns

See the original story at:
http://www.prweb.com/releases/2009/02/prweb1941044.htm

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.

Commentary by Veny Musum on this issue:

Dear NJ Attorney General Milgram,
 
I am VERY concerned about this latest IDSA action in light of their abysmal, outrageous track record.  As you know, CT Attorney General Blumenthal found the former IDSA Guidelines Panel guilty of “Serious conflicts of interest” and were forced to disband!  With NJ ranking third highest in the nation with this devastating chronic disease, I insist you follow up on this thoroughly.  Demand an unbiased PATIENT centered panel of researchers and clinicians with experience in successfully treating Lyme diseases.  I insist on your very close oversight of their actions.  We citizens of New Jersey have been egregiously wronged by this IDSA Panel and continue to suffer as a result of their corrupt actions of the past.
 
The IDSA’s latest actions strike me as a shameless ruse to distort the AG of CT’s demands at reforming the panel to obtain a more balanced view on their guidelines going forward.  I look forward to your reply.
 
Most Respectfully,
Veny W. Musum

Senior Vice President
John Paul Mitchell Systems
11 Gelsey Lane
Basking Ridge, NJ  07920-3062
Office: #908-580-0302
Cell:  #908-227-5209
Email: VWMusum@verizon.net

Another relevant news article:

IDSA Lyme Disease Review Panel Announces Public Input Period and Hearing Date
IDSA has convened a review panel to examine whether the Society’s Lyme Disease guidelines, published in 2006, should be revised or updated based on a rigorous review of the medical and scientific evidence on the diagnosis and treatment of Lyme Disease.

The Review Panel is initiating a 60-day input period to allow the public to submit information to ensure that all points of view are taken into consideration. There will also be an open public hearing to offer a forum for the presentation of relevant information on the diagnosis and treatment of Lyme Disease.

The 60-day public input period is now open.  Interested individuals and organizations may submit information as follows:

Submissions* must be received by 5:00 PM Eastern, April 3, 2009 and must include:

1. Statement (< 5 pages) including:
a. Name and contact information of the submitter
b. Issue(s)/concern(s) and relevance to 2006 IDSA Lyme Disease guidelines; and/or
c. Issue(s) not covered in the 2006 IDSA Lyme Disease guidelines
2. Reference list of supporting data (if available) (<2 pages)

Submissions should be made to the attention of the “IDSA Lyme Disease Review Panel” at: lyme@idsociety.org.
 
The Review Panel is committed to considering all points of view. The Panel respectfully requests that those submitting comments not exceed the page limit in order to ensure that Panel members have ample opportunity to review all comments.

*Note that submissions may be posted Online by IDSA for public viewing.

Open Public Hearing April 27
The Review Panel will hold an open public hearing on Monday, April 27, 2009 in the Washington, DC area (location to be determined).  Additional information, including how to apply to be a presenter, is forthcoming.

Lorraine Johnson, JD, MBA, Chief Executive Officer

California Lyme Disease Association

Empowering patients through advocacy, education and research

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