The Infectious Diseases Society of America (IDSA) has begun the process of reviewing its official treatment guidelines for Lyme disease. The IDSA guidelines currently in place, adopted by the CDC as the sole “standard of care” for Lyme disease, were founded upon limited and selected opinions, research, and preferences, failing to represent the full spectrum of research and experience in this complex field. These guidelines have been responsible for denying hundreds of thousands of people access to proper and informed diagnoses, adequate and aggressive treatment, and an opportunity for good health.
The Lyme Action Network and other Lyme disease advocates across the state have united under the banner of The New York Coalition of Lyme and Tick-borne Diseases to call for reform at the highest levels.
YOUR PARTICIPATION IS REQUESTED. PLEASE JOIN US IN A CALL FOR REFORM:
1) Please review the following sample letter and send to your elected members of Congress – Senators and Congressmen/women. Add your own comments concerning your personal situation if you wish. Be sure to include the “SAMPLE LETTER FOR CONGRESSIONAL REPRESENTATIVE TO SEND TO THE IDSA” (see below) with your letter.
2) ALSO send the “BACKGROUND” information, a report that details the history and the breadth of research that needs to be considered, so that your representative will know exactly what the issues are and what we want them to do about it. You will need to download this pdf document and attach it to your letter. http://empirestatelymediseaseassociation.org/LYME-DISEASE-INFORMATION-3272015.pdf
(When you send the letter, please remember to go through and delete the instructions that we’ve added in parentheses.)
Thank you for your participation in this effort.
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SAMPLE LETTER TO YOUR CONGRESSIONAL REPRESENTATIVES
(DATE)
Dear (Senator or Congressmember):
I (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 reflect a complete, fair, transparent, and trustworthy process in accordance with the Institute of Medicine’s “Standards for Developing Trustworthy Clinical Practice Guidelines”; be free of bias and conflicts of interest; and reflect the entire body of scientific evidence pertaining to this complex and poorly understood disease.
Historically, the IDSA treatment guidelines have been founded upon “selected” research and clinical experiences, ignoring a body of research and clinical observation that challenge the IDSA’s long-held beliefs about the disease. Because the IDSA’s guidelines have been the only ones endorsed by the NIH and the CDC since 2002, these limited and restrictive guidelines have resulted in the failure of patients to be informed about their treatment options; the failure of doctors to be fully informed about all professional perspectives pertaining to the the nature of the disease and the variety of treatment options; and the refusal of insurance companies to provide essential medical care to patients with persistent Lyme disease symptoms, which, in many cases, leads to long term suffering and disability.
Your intervention is critical to protect the health and well-being of your constituents.
I (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 (a sample letter is included below, and IDSA Directors are listed in APPENDIX E of the “BACKGROUND” document, attached).
2. Please send a copy of your letter to the CDC, so they will be aware that biased guidelines are unacceptable and could initiate further inquiry.
Background and resource information is attached in a pdf file, for your review.
Your attention to this matter is greatly appreciated.
Sincerely,
(Type your name)
(Include this next section with your letter to your representatives…)
SAMPLE LETTER FOR CONGRESSIONAL REPRESENTATIVE TO SEND TO THE IDSA:
TO: Directors of the Infectious Diseases Society of America
cc: Directors of the Center of Diseases Control
Director of the National Institutes of Health
FROM: (Senator/Congressperson)
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. Thank you.
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[Don’t forget to delete our instructions to you (in parentheses), and remember to attach the “BACKGROUND” material to your letter to your elected officials. Download it here: http://empirestatelymediseaseassociation.org/LYME-DISEASE-INFORMATION-3272015.pdf
