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01/21/2012 05:55 PM

NatCapLyme, Rep. Wolf, IDSA guidlines

Jensen16
 
Posts: 754
Member

Did everyone see the NatCapLyme site?

http://www.natcaplyme.org/

"Rep. Wolf Requests to Remove IDSA Guidelines Pending Thorough Review"

Thank you NatCapLyme, Rep. Christopher Smith, Rep. Frank Wolf, Rep. Chris Gibson !!!

I wished our representatives in Maryland were working as hard to protect us here as you are for your constituents!

Reply

01/21/2012 06:02 PM
Essent55
Essent55  
Posts: 44
Member

Thank you! Good articles.

01/21/2012 06:37 PM
WiscLamLymie
WiscLamLymie  
Posts: 1454
Group Leader

Great!

01/22/2012 11:30 AM
Bettyg
 
Posts: 32197
VIP Member
I'm an Advocate

OUTDATED GUIDELINES FOR TREATING LYME DISEASE

SHOULD BE REMOVED FROM GOVERNMENT WEB SITE

USED BY DOCTORS AS RESOURCE FOR MEDICAL PROTOCOLS

Washington, D.C. (January 20, 2012) –

Three members of Congress who have worked to help people with Lyme disease want outdated treatment guidelines removed from a government Web site that doctors use as a resource for medical protocols.

In a letter released today to the company that manages the National Guideline Clearinghouse (NGC), Rep. Frank Wolf (R-VA), Rep. Chris Smith (R-NJ) and Rep. Chris Gibson (R-NY) and Rep. Chris Gibson (R-NY) said the guidelines have not been thoroughly reviewed in over five years, a condition for inclusion in the database.

They urged the company to “remove the guidelines until they have been fully reviewed and revised.”

“The Lyme disease guidelines of the Infectious Diseases Society of America (IDSA) have been highly controversial and have been responsible for insurance company denials of Lyme disease treatments,” the congressmen wrote.

“We have recently been informed that these guidelines have been re-instated on the NGC Web site, notwithstanding the fact that they are more than 5 years old and, hence, are no longer current.

Our constituents are concerned that these guidelines have not been subject to a complete review for currency and that the methodology of any review has not been disclosed as required by the NGC's guidelines.”

Below is the complete text of the letter:

Vivian H. Coates, MBA

Vice President, Information Services and Health Technology Assessment

ECRI Institute

5200 Butler Pike

Plymouth Meeting, PA 19462-1298, USA

Dear Ms. Coates:

As your organization is currently contracted by the U.S. Department of Health and Human Services' U.S. Agency for Healthcare Research and Quality (AHQR) to maintain the National Guidelines Clearinghouse (NGC), we write to you as representatives of areas that have a large and growing Lyme disease problem.

Our constituents have again contacted us about an issue that needs immediate attention to protect their welfare.

As you no doubt know, the Lyme disease guidelines of the Infectious Diseases Society of America (IDSA) have been highly controversial and have been responsible for insurance company denials of Lyme disease treatments.

We have recently been informed that these guidelines have been re-instated on the NGC Web site, notwithstanding the fact that they are more than 5 years old and, hence, are no longer current.

Our constituents are concerned that these guidelines have not been subject to a complete review for currency and that the methodology of any review has not been disclosed as required by the NGC's guidelines.

Our understanding is that the recently re-submitted guidelines are based on the July 2010 Final Report of the Lyme Disease Review Panel of the Infectious Diseases Society of America, which specifically was “not charged with updating or rewriting the 2006 Lyme disease guidelines.”

This aforementioned review panel was convened pursuant to an agreement between the Connecticut Attorney General and the IDSA to end the Attorney General's antitrust investigation into the IDSA's 2006 Lyme disease guidelines.

The 2010 panel recommended more than 25 revisions to the guidelines, which have not been addressed.

We have been presented with considerable evidence that the NGC process, which requires that guidelines be reviewed for currency and disclosure of the methodology for the process, was not complied with before reinstating the guidelines until 2015.

We urge you to follow NGC currency compliance procedure and remove the guidelines until they have been fully reviewed and revised.

The mission of the NGC is "to provide physicians and other health professionals, health care providers, health plans, integrated delivery systems, purchasers, and others an accessible mechanism for obtaining objective, detailed information on clinical practice guidelines and to further their dissemination, implementation, and use."

Only a careful and transparent procedure will remove the cloud that has hung over these guidelines.

Thank you for your serious consideration. We look forward to your reply.

Sincerely

Rep. Christopher Smith

Rep. Frank Wolf

Rep. Chris Gibson

**************************

IDSA has been trying to pass off its old Lyme guidelines as "new and improved." Three congressmen are protesting loudly.

Read the latest developments in the LymePolicyWonk, and then click on the attachment at the end of the blog to read the congressmen's letter.

betty note: above is congressmen's letter since this is from 2 sources.

http://www.lymedisease.org/news/lymepolicywonk/898.html


01/22/2012 02:22 PM
Jensen16
 
Posts: 754
Member

BettyG,

I wish we could get help from our Maryland representatives to support the request from Virginia, but not sure if it is possilbe in Maryland given recent past history.

What do you think?

Janet


01/22/2012 03:31 PM
Bettyg
 
Posts: 32197
VIP Member
I'm an Advocate

janet, GO FOR IT! LOBBY THEM GALORE; if each of you send emails/CALL/FAX them; numbers count!!

you might hit them at justthe RIGHT moment; a moment of WEAKNESS?|!

my pc is back; problems galore but trying to locate my files.

all my WORD ones are gone right now! in lost and found!

bettyg, iowa activist


01/22/2012 04:37 PM
gr8ceful
 
Posts: 106
Member

I think this is a great oppurtunity for us to get involved and speak out

It will take some time but Im willing to gather State Senators info

how should I go about this Betty?


01/22/2012 05:19 PM
Bettyg
 
Posts: 32197
VIP Member
I'm an Advocate

hi carissa Wink

are you talking about YOUR state federal senators or all 50 states?

most ofthat info is already together.

check ACTIVISM forum, CONGRESS BILL; i think it's there; SUPPER is calling me; will be back LATE tonight Wink

hugs/prayers,

bettyg, leader/activist..iowa


01/22/2012 05:30 PM
doglick
doglickPosts: 682
Member

I remain skeptical. The autoimmune industry is a trillion dollar a year business. Both research, doctors, and drugs. If it comes out that all the RA and MS and others are cause by a bacterium that can be cured, The industry will be hammered. They will fight with every spare dollar they have to maintain their vast income

But give it a go anyways! There are just too many of us to ignore.


01/23/2012 07:57 AM
Jensen16
 
Posts: 754
Member

Doglick,

Good point.

Here is a paper from Romania:

"CONTROVERSIES IN LATE NEUROBORRELIOSIS AND MULTIPLE SCLEROSIS  CASE SERIES"

Th erapeutics, Pharmacology and Clinical Toxicology

Vol XIII, Number 1, March 2009

Pages: 57-62

© Copyright reserved 2009

I'll try to upload the pdf under the Forums tab -> Lyme facts.

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