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Tuesday, June 14, 2005

News Flash! $100 Million Proposed for Lyme Disease

Acclaimed Authors Join the Lyme Disease Association, Affiliates & Friends All Support H.R 2877 “ALERT” Act

Authors Amy Tan, Jordan Fisher Smith, and E. Jean Carroll ask you to take action now. Congressman Christopher Smith (R-NJ) a longtime friend of the Lyme community who has successfully fought for funding, scheduled meetings for us with important officials in DC, and also written supportive letters for our doctors, has just introduced strong federal Lyme disease legislation (H.R.2877) entitled “Act for Lyme Education and Research and Tick-Borne Diseases” (ALERT). The Smith bill will go a long way in getting a much needed and higher level of resources dedicated to Lyme disease, as well as providing numerous measures to help ensure that resources are expended effectively to provide the most benefit to Lyme and other tick-borne disease patients. Smith was joined by Congressmen Wayne Gilchrest (MD) and Todd Platts (PA) (See http://thomas.loc.gov/ for text)

Authors & Lyme Advocates Ask For Your IMMEDIATE action to help this bill become law.

The Smith bill focuses on research but also contains an effective advisory committee that will have input into the expenditure of the monies and provide the Lyme community a strong public voice and balanced scientific viewpoint in regard to tick-borne diseases in Washington, DC. The committee will include a selection of doctors and scientists who support chronic Lyme disease and also patients and representatives from patient advocacy groups. The new bill will:

• Increase the amount of Lyme research funding available by $100 million over 5 years.
• Ensure mandatory research goals, better surveillance and improved prevention programs.
• Ensure that committee is balanced & represents diversity of scientific viewpoints on issues.
• Provide for outcomes research, including treatment studies.
• Provide for National Academies of Science, Institute of Medicine, to study chronic Lyme disease including: assessment of empirical evidence of treating physicians and published peer-review, and assessment of treatment guidelines, e.g., Infectious Diseases Society of America and International Lyme & Associated Diseases Society, and their acceptance and utilization.

On the other side of Capitol Hill, members of the Senate have expressed a similar desire to introduce and pass strong Lyme disease legislation. We are hopeful that the Senate will pass language that is identical, or nearly identical, to that in HR 2877. We are most appreciative of the work of Senators Santorum and Dodd in their efforts to work with the House and pass equally strong Lyme disease language so that a bill can finally move to the President’s desk for his signature.

Many of you have asked about HR 2526, the bill introduced by Representative Sue Kelly. While we were encouraged by the introduction of this bill and appreciate Representative Kelly’s efforts, we believe that we need to accomplish much more than the provisions in HR 2526 if we realistically hope to see significant, tangible gains in research and in the diagnosis, treatment, and prevention of Lyme disease. For example, the Kelly bill provides half as much funding for research, does not direct the government to commission an independent scientific study of chronic Lyme, and does not ensure that advisory committee members have experience treating chronic disease.

YOU MUST ACT NOW! DO NOT PUT THIS LETTER DOWN WITHOUT ACTING. DELAY CAN COST US THIS MUCH NEEDED BILL.

Please fax, email, or call your Senators and Representatives today. Tell your Representatives in the House that you strongly support HR 2877 and you’re counting on their support. Also tell your Senators that you want them to support a strong Senate bill, like HR 2877. Use the sample letter enclosed or write your own and include a paragraph about how Lyme affects your family. See your telephone directory or http://www.visi.com/juan/congress/ for names/addresses of congressmen. Please visit the LDA website at www.LymeDiseaseAssociation.org for current updates. See http://thomas.loc.gov/ for bill text.

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