Good news regarding efforts to ask for Congressional Intervention in the IDSA Review Process!
The Lyme community has united with the LDA and LymeDisease.org to send letters to the US House of Representatives Lyme Disease Caucus, the US House of Representatives Energy & Commerce Committee, and the IDSA itself. Each letter requests specific actions to be taken by each recipient in regards to the IDSA Lyme guidelines development process. The letters asked the House Lyme Caucus to intervene in the IDSA Review process and the House Energy & Commerce Committee to hold a hearing. Please go to the News Section for links to the Lymedisease.org and Lyme Disease Association articles about these efforts.
This action complements the efforts of the New York State Coalition for Lyme and Tick-born Diseases (of which the Lyme Alliance of the Berkshires is a member) to send their own letter as well as to encourage constituents to write letters to their own Senators and Representatives to request intervention in the IDSA Lyme Review Process.
I spoke with Representative Chris Gibson’s office yesterday and I was told that in response to both these efforts, members of the House Bipartisian Lyme Caucus have mailed a letter with questions to the IDSA and attached both the LDA/Lymedisease.org/Community letter and the New York State Coalition letter.
The IDSA has promised to send a formal response.
The IDSA has also agreed to extend their 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.
From the LDA website: Lyme Community Unites: Protect Patient Rights
From LymeDisease.org: LDo and LDA submit comments on IDSA guideline process on behalf of 67 Lyme groups across the nation!
Dear fellow Lyme patient and Lyme patient advocates,
The IDSA is preparing to hand down their new guidelines for Lyme disease. As you are probably aware, a major concern is that the IDSA may not consider all the scientific evidence and all the patients' claims while in the process of revising their (previous) guidelines.
In violation of IOM Standards, the panel does not include representatives from key affected groups, including a current or former patient and a patient advocate or patient organization representative.
A second concern is that, as required by National Guidelines Clearing House, organizations are advised to review and appropriately revise their Treatment Guidelines to reflect new science every five years.
The New York State Coalition on Lyme and Tick-borne Diseases of which the Lyme Alliance of the Berkshires is a member, has worked very hard to craft a letter which is below that you can send to your United States Senator and Congress member in your state if you agree with our view. Important additional documentation is attached as a pdf file. We feel that it is urgent for everyone be on board in this effort to insure that the IDSA consider all relevant information for their "2015 Guidelines for Lyme and Tick-borne Diseases."
The time element is crucial, since the deadline for comments is April 8th. Please do this immediately if possible.
1. Email your US Senator and Congressman with the sample letter provided explaining the urgency of them writing to the IDSA directors with regard to new guidelines for Lyme Disease that are about to be revised.
2. In that email, include a sample letter for your legislators to use when sending out their letters to all of the directors of the IDSA, CDC, and NIH.
3. With that email to both of your legislators, include the large PDF file created by the New York State Coalition for Lyme and Tick-borne Diseases regarding the strong bias of the current guidelines panel, the history of antitrust activity of the IDSA, and relevant science that the current panel needs to consider. That PDF file also includes Appendix E with contact info for all directors of IDSA. LYME-DISEASE-INFORMATION-3272015.pdf
4. If you can, follow-up your letters with a phone call.
Link to the PDF: http://www.empirestatelymediseaseassociation.org/LYME...
To find your legislators go to:
https://www.opencongress.org/people/zipcodelookup and enter your zip code.
PATIENTS / ADVOCATES: The following is a sample letter (in dark blue) which you can send to your legislators
Please copy the letter below, into a different email or on paper.
Then use appropriate "I" or "We" and fill in your information to send to your Senator and Congress member.
Remember to attach the pdf document with your email or include a printed copy of this pdf with snail mail letters or faxes to your US rep's.
Dear Senator /Congress member:
Dear Senator /Congress member:
I (or We) seek your intervention to ensure that the new treatment guidelines for Lyme disease, currently in the process of being drafted by the Infectious Diseases Society of America (IDSA), will result in guidelines that reflect a complete, fair, transparent, and trustworthy process in accordance with the Institute of Medicine's "Standards for Developing Trustworthy Clinical Practice Guidelines," and also be free of conflicts of interest and demonstrate an inclusion of the entire body of scientific evidence.
I (or We) ask for your attention to this matter because historically the IDSA treatment guidelines have been the only ones endorsed by the NIH and the CDC. Since 2002, IDSA guidelines have been limited and restrictive, resulting in the failure of patients to be informed about their treatment options and the use of such guidelines by insurance companies to deny essential medical care to patients with persistent Lyme disease symptoms, which, in many cases, leads to long term suffering and disability. To ensure the safety and well-being of your constituents, I (or We) ask you to please intervene.
I (or We) respectfully request that you:
1) Please send a letter to the IDSA Directors reminding them that their review should be unbiased and representative of all available science (sample letter is below and IDSA Directors are listed in APPENDIX E)
2) Please send a copy of your letter to the CDC, so they will be aware that biased guidelines might initiate further inquiry.
Background and resource information is attached in a pdf file, for your review.
Your immediate attention to this issue would be appreciated as the IDSA comment period closes on April 9, 2015.
Patient/advocate to fill In your name and affiliation here
PS: DEAR (Senator/Congressperson), PLEASE SEE BELOW ALSO, FOR:
A PROPOSED SAMPLE LETTER CONGRESSIONAL REPRESENTATIVES MAY SEND TO THE DIRECTORS OF THE CDC, NIH, AND IDSA
* and when sending these letters, please also include a post script to indicate that you are including the attached pdf.
To: Directors of the Infectious Diseases Society of America
cc: Directors of the Center of Diseases Control
Director of the National Institutes of Health
Medical and scientific experts, patients, and advocates have requested my attention to the matter of the Treatment Guidelines for Lyme disease, now under review by the Infectious Diseases Society of America (IDSA).
Significant evidence has been offered to demonstrate that the process now underway may intend to dismiss or disregard critical scientific research, evidence, and experience that may not be in concert with the historical tenets represented by the IDSA, and that the information considered in this review may be pre-selected in order to justify and support desired outcomes.
It also appears that the IOM Standards, which call for the inclusion of all opinions and the granting of adequate hearing to all arguments by representatives of ALL key affected groups, are being disregarded. Patients with persistent symptoms following treatment, the physicians who treat them and the researchers studying these phenomena should be fully represented on this review panel.
As the stewards of the health and welfare of our constituencies, it is our expectation that a fair, trustworthy, and unbiased review will address all scientific evidence available on this topic. We would particularly like the IDSA to respond to the research listed in the attached/additional pdf file, which includes both new and prior research that may not yet have been given adequate consideration by the IDSA.
The burgeoning threat of Lyme disease requires a responsible and complete response by those charged with the health and safety of the public. Your attention to this matter is of utmost importance.
Senator or Congress member ____________
Please review the attached pdf: