Lyme Comm. Unites: Protect Patient Rights

09 April 2015

UPDATE 5-6-15: Click here for LDA/LDo Press release on IDSA guidelines process

In a move designed to spotlight concerns about the Infectious Diseases Society of America (IDSA) guidelines' development process, groups in the Lyme community nationwide have come together to make their voices heard. The effort to date consists of three different letters which were signed on by multiple groups representing dozens of states across the U.S. and were then sent to the US House of Representatives Lyme Disease Caucus, the US House of Representatives Energy & Commerce Committee, and the IDSA itself, which requested input into its newly structured guidelines development process.2009-10 LDA Aff Meeting 148kb2009 LDA file photo depicts Lyme leaders from across the U.S. at an LDA Affiliate Meeting in Maryland.*

Citing concerns about the lack of patient representation− a concept the Institute of Medicine (IOM) has endorsed for guidelines' development in general− and also the lack of clinicians in the trenches who are treating not only Lyme but the often concurrent tick-borne diseases seen in many patients, the groups have requested specific actions to be taken by each letter recipient.

Further actions may be forthcoming by the Lyme Community. As other actions occur, we will post them.

 

NOTE: The IDSA has just extended its Lyme Guidelines Process Comments until April 24th. Anyone who has not replied to the IDSA directly can go to their website and register their comments. Click here for IDSA website.

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VIEW LETTERS RESULTING FROM LYME GROUP LETTERS

Click here for Letter from US House of Representatives Lyme Disease Caucus to the IDSA

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VIEW LETTERS FROM THE LYME GROUPS

Click here for Letter to US House of Representatives Lyme Disease Caucus on the proposed new IDSA Guidelines process from 57 Groups

Click here for Letter to US House of Representatives Energy & Commerce Committee asking for a hearing on issues surrounding the IDSA Guidelines process from 57 Groups

Click here for LymeDisease.org and Lyme Disease Association Letter of Comments to IDSA Guidelines process from 67 Groups

Click here for LymeQuest Submission on behalf of 22 groups & 67 groups #

# NOTE: IDSA extended its filing time but would not permit LDA/LDo to submit additional comments with additional groups signed on. So LymeQuest submitted the additional comments to IDSA on behalf of all the groups, total of 89 (22 + 67).

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VIEW LDo's PATIENT SURVEY RESULTS

Click here for LymeDisease.org's IDSA Guidelines Patient Survey Results

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VIEW LETTERS+ FROM LDA/LDo TO IDSA PARTNER ORGANIZATIONS INVOLVED IN GUIDELINES' DEVELOPMENT PROCESS

Click here for AAFP President
Click here for AAN President
Click here for AAP President
Click here for ACR President
Click here for AMMI-CA President
Click here for CNS President
Click here for ESA President
Click here for ESCMID President
Click here for PIDS President
Click here for ACP President
Click here for IDSA President

+NOTE: Each mailing contained the cover letters shown above and copy of the two group submissions to IDSA.

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VIEW LETTERS FROM OTHER COUNTRIES

Click here for comment letter to IDSA from the UK

Click here for comment letter to IDSA from Deutsche Borreliose Gesellschaft e.V. (German Society of Lyme Borreliosis)

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VIEW HISTORY OF LYME GROUP ACTIONS AND IDSA PROJECT PLAN

Click here for history of Lyme Group actions

Click here for IDSA Project Plan: Guidelines for the Prevention, Diagnosis, and Treatment of Lyme Disease by the Infectious Diseases Society of America, the American Academy of Neurology, and the American College of Rheumatology (Note: By clicking this link, you will leave the LDA website and be on the IDSA website)

 

*The groups represented in photo above may or may not be signed on to one or more of the letters

 

 

 

 

Lyme Disease Association, Inc.
PO Box 1438, Jackson, NJ 08527 

888-366-6611 | information line
732-938-7215 | fax
LDA@LymeDiseaseAssociation.org | email

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