Tuesday, March 24, 2015

URGENT CRITICAL do this NOW.. IDSA Deadline Very Soon

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, we have extremely well founded concerns that the IDSA does not consider all the scientific evidence and all the patients' claims in their review and revision of their previous guidelines. (a requirement by the Institute Of Medicine (IOM) is that guidelines be reviewed, updated and revised every five years to reflect new evidence)

The New York State Coalition on Lyme and Tick-borne Diseases has worked very hard to craft a letter which is attached that you can send to your United States Senator and Congressman/woman in your state if you agree with the views taken in our letter. We feel that it is urgent that 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 9th. Please do this immediately if possible.

To find your legislators go to:
https://www.opencongress.org/people/zipcodelookup  and enter your zip code.

The following is a sample letter we ask if you will send to your Senator and Congressman/woman and please attach the pdf document which is attached below as well.

Thank you for helping with this critical issue that will affect every single Lyme and Tickborne disease patient in the USA and beyond

Jill Auerbach

Hudson Valley Lyme Disease Association, Chairperson
NYS Coalition on Lyme and Tick-borne Disease, Member
"What's the problem? Well it's the ticks of course!"
 --------------------------------------------------------------------------------Dear Senator /Congressman:
The New York State Coalition on Lyme and Tick-borne Diseases, representing hundreds of thousands of Lyme disease patients, requests your immediate attention to an urgent matter that has serious implications to the health and wellness of the American public.
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 a set of guidelines that reflects a complete, fair, transparent, and trustworthy process in accordance with the Institute of "Standards for Developing Trustworthy Clinical Practice Guidelines," free of conflicts of interest, and with inclusion of the entire body of scientific evidence. We ask for your attention to this matter because historically the IDSA treatment guidelines have been the 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, we ask you to please intervene..

We request that you:

1) Send a letter to the IDSA reminding them that their review should be unbiased and representative of all available science (sample letter attached, IDSA Directors are listed APPENDIX E)

2) 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 for your review.

Your immediate attention to this issue would be appreciated s the IDSA comment period closes on April 9, 2015.


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