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CALL TO ACTION 2008 #6 (September 16, 2008)
from Pat Smith, President, Lyme Disease Association, Inc. (LDA)

Lyme & Tick-Borne Disease Prevention Education & Research Act
of 2007 S-1708 / HR-741

Update: Over the past year and a half, many of you have taken time from your busy schedules to contact your own Members of Congress and the appropriate Congressional Committee Chairs concerning the fate of the Lyme disease bills and also to present to them Lyme-related issues. You responded with overwhelming support, calling, writing, and meeting with these Members. Your united support has made a tremendous difference in the way legislators have responded. In my last update, 2008 #5, I indicated that serious coordinated federal activity was occurring. Here's a summary of some of that activity:

Congressional Letters of Inquiry: Our bill sponsors, Congressman Christopher Smith and Senator Christopher Dodd have affirmed their commitment to the Lyme community through their sponsorship and support of the Lyme bills. Now, Congressman Chris Smith, joined by Congressman from other states, sent a letter to the Secretary Leavitt of Health & Human Services requesting two things:

1. that the IDSA Guidelines be removed from the Centers for Disease Control & Prevention (CDC) website
2. that the "inaccurate information on the internete" article citing almost all Lyme disease groups (except ALDF) as providing inaccurate Lyme disease information on their websites also be removed from the CDC website (9-10-08).

Congressman Smith had written prior letters to CDC requesting such action (as had LDA and its associated organizations). Senator Chris Dodd directed his letter to CDC itself and asked for the Guidelines' removal.

Additionally, (9-11-08) Congressman Chris Smith, with other Congressmen signing on, wrote to the Office of Health & Human Services (HHS), Secretary Leavitt, requesting that HHS look into a lack of transparency in HHS agencies, in particular, the role of the CDC in attending what is in effect a "closed" Lyme disease conference where a Lyme disease research agenda will be discussed (11th International Conference on Lyme Borreliosis and Other Tick-borne Diseases).

In August 2008, Congressman Chris Smith sent a well documented letter, with several other Congressmen signing on board, to the Office of the Inspector General (OIG), requesting a full fledged investigation into what appear to be serious issues with federal agencies regarding Lyme and other tick-borne diseases.

Congressional Science Briefings: In April 2008, Senator Dodd invited the LDA and Dr. Brian Fallon to present a scientific briefing to the Senate HELP Committee, where the bill resides. The House Lyme Disease Caucus assisted the LDA in arranging a briefing for House Members the same day. Due to IDSA's lobbying in DC (telling Congress that there is NO science behind chronic Lyme disease), we were advised to hold another House briefing after Congress returned from summer recess, and on September 8, 2008, with the help of Lyme Caucus Co-Chair Christopher Smith, LDA held a well-attended scientific briefing of House staffers featuring Dr. Ken Liegner, who presented literature documenting the persistence of the Lyme disease bacterium in the body after treatment. His 20+ years of experience in the field and his CDC-documented case of such a patient enabled a very focused discussion of the science. As a result, 2 new co-sponsors signed onto HR 741.

FYI, we have heard that there may be a "lame duck" session after the November election, so we are working very hard to continue the plan we have in place to get the Lyme disease bills passed. We'll keep you apprised of any actions to take. Please understand that efforts to pass the Lyme bills are ongoing & may go into the next Congress.

Other federal information: The CDC has been actively building bridges with the Lyme community starting with my visit last year to the CDC in Fort Collins, CO, where I spoke to the Vector-Borne Division about the state of Lyme and tick-borne diseases. The CDC continued outreach one month ago in Ridgefield, CT where CDC members met with members of the community coordinated through the Ridgefield Lyme Disease Task Force. Several CDC employees listened to concerns from residents and advocates. Last week, a senior member of the CDC met with CT-based Time for Lyme (TFL), [LDA affiliate] where several meetings took place over 2 days in Connecticut. Besides the TFL boards, one of the meetings hosted by TFL Co-Presidents Diane Blanchard and Deb Siciliano included a number of Connecticut advocacy group leaders and me. Our concerns were expressed including surveillance, education, and treatment issues. This meeting was followed by a meeting with the CT Attorney General. We all know that continuing dialogue is absolutely necessary to resolve our differences. CDC is also partnering with the Greenwich Red Cross and TFL to distribute tick removal kits which TFL developed in conjunction with the Red Cross.

As always, we encourage patients to contact their Congressional representatives with their personal stories or any Lyme related problems they have experienced. If you wish to continue educating Congress regarding a need for the bills (HR 741/S1708), you can go to the LDA website - click the Legislative link on the top menu or go to the direct link.

Once you locate your representatives' contact information and note any updates posted on the site, feel free to contact your representatives, especially about the need to support the bills Your input is crucial and making a huge difference!

Pat Smith
Lyme Disease Association, Inc.
PO Box 1438
Jackson, NJ 08527
888-366-6611 information line
732 938-7215 fax