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Senate & House Lyme Bills: $100 Million for Lyme Research & Education

National Contact: Pat Smith 888 366 6611
FOR IMMEDIATE RELEASE

Senate & House Lyme Bills: $100 Million for Lyme Research & Education
National Lyme Disease Association Announces Support for Bills
Nearly 90 Lyme groups supporting measures

Jackson, NJ─ The national non-profit Lyme Disease Association announces its support of two new companion bills introduced in Washington July 25 and 26: Senate bill, S.1479 introduced by Senator Christopher Dodd (CT) for himself and Senator Rick Santorum (PA) and House bill H.R. 3427 introduced by Congressman Christopher Smith (NJ) for himself and Congresswoman Sue Kelly (NY). The “Lyme and Tick-Borne Disease Prevention, Education, and Research Act of 2005,” authorizes an additional $100 million for Lyme disease research, education and prevention over five years and provides goals which address the issues surrounding Lyme disease. About 220 thousand Americans develop Lyme each year, making it the most prevalent vector-borne disease in the US today. According to the Centers for Disease Control & Prevention (CDC), only 10% of cases that meet its criteria are reported.


The companion bills provide a much needed and higher level of resources dedicated to Lyme disease. They also contain numerous measures to ensure that resources are expended effectively to provide the most benefit to people with Lyme and other tick-borne diseases (See http://thomas.loc.gov/ for text).

The bills direct the U.S. Secretary of Health and Human Services over a 5 year period to include development of a sensitive and accurate diagnostic test; improved surveillance and prevention; and clinical outcomes research to determine long-term course of illness and effectiveness of different treatments. They establish a Tick-Borne Diseases Advisory Committee to ensure interagency coordination and communication, among federal agencies, medical professionals, and patients/patient advocates.

“These bills are outstanding pieces of legislation that addresses chronic Lyme disease, an area often neglected by government and physicians alike,” stated LDA President Pat Smith. “Now we have the same legislation introduced in both the US Senate and US House of Representatives with a comprehensive set of goals designed to help Lyme patients receive early diagnosis and appropriate treatment and to help in the development of education and prevention programs. As a result of the introduction of the bills, we are one step closer to realizing a federal law for Lyme disease and we thank Senators Dodd and Santorum and Representatives Smith and Kelly for their commitment to making this happen.” She indicated that the next step is to have patients contact their senators and representatives to co-sponsor these bills.

Nearly 90 organizations nationwide including all LDA chapters and affiliates have signed on to a letter to support the bills. Internationally acclaimed author Amy Tan, Joy Luck Club, author Jordan Fisher Smith, and E. Jean Carroll, part of LDA’s Literati with Lyme team (see www.Lyme literati.org) support the bills. All three authors have Lyme disease, and Tan and Fisher Smith have discussed their personal experiences in their books. “As yet another patient with Lyme disease, I personally look to these bills as my hope for the future” Ms. Tan states. “For the rest of this country, this bill represents the first reality-based plan for dealing with an epidemic that must be stopped. It is a devastating disease–one that is widely misunderstood, even within the medical community. Lyme is not simply temporary arthritis. Lyme can quickly become a brain disease with lifetime consequences. The Lyme bacterium is a more clever bacterium than previously thought. It can transform itself.”

Ms Tan also questions why the disease is spreading so quickly in nearly every state and so many of its victims go undiagnosed, and why treatment fails in a proportion of late-stage patients. “If the disease goes unchecked, will we soon face a costly medical crisis nationwide,” Tan said. “Research is our war plan against Lyme disease. It is the only way we will be able to detect, combat, and destroy a bacterium that has spread to nearly every state in the union.”

The International Lyme & Associated Diseases Society (ILADS), a professional medical society, also endorses the bills. The Society consists of treating physicians and other health care providers for chronic Lyme disease (see www.ILADS.org). ILADS is particularly concerned about the vast number of doctor-diagnosed cases which do not fit the CDC surveillance criteria and are never able to be reported, thus leading to an inaccurate picture of actual case numbers and distribution. These bills ask for reform of the diagnosis and reporting system.

LDA urges people to contact their U.S. Senators to co-sponsor S.1479 (Dodd/Santorum) and their US Congressmen to co-sponsor H.R. 3427 (Smith/Kelly). Please visit the LDA website for more information www.LymeDiseaseAssociation.org. See http://thomas.loc.gov/ for bill text and http://www.visi.com/juan/congress/ to locate contact information for your congressmen and senators.

List of Bill Supporters to Date 8/15/05

 

Lyme Disease Association, Inc.

LDA Chapters, Affiliates, Programs:  LDA Blue Ridge Chapter (VA)
LDA Cape Cod Chapter (MA)
LDA Delaware Chapter (DE)
LDA Pennsylvania Chapter (PA)
LDA Rhode Island Chapter (RI) 
New York Lyme Support Program (NY)
California Lyme Disease Association, Inc. (CA)
Time for Lyme, Inc. (CT)
Lyme Disease Network of New Jersey, Inc.  (NJ)
Lyme Association of Greater Kansas City, Inc.(KS, MO)
Oregon Lyme Disease Network, Inc. (OR)
Lyme Disease Assoc. Southeastern PA, Inc. (PA)
Texas Lyme Disease Association, Inc. (TX) 

Support & Non-profit LDA Friends:
Lyme Disease SG of Alabama, Mobile (AL)
Fairfield Bay Support (AR)
Arizona Lyme Disease Association (AZ)
Sacramento Lyme Support Group (CA)
Sonoma County Lyme Support (CA)
SDA Lyme Support Group (CA)
South Orange Co. Lyme Support Group (CA)
Trinity County Lyme Disease Network (CA)
Danville/East Bay Lyme Support Group (CA)
Mid-Peninsula LDSG (CA)
San Diego County (CA)
Marin County Lyme Disease Support Group (CA)
San Francisco Lyme Disease Support (CA)
Easton Connecticut Lyme Support (CT)
Newtown Lyme Disease Task Force (CT)
Greater Danbury LD Support Group (CT)
Colorado Support Group (CO)
American Lyme Association (DE, CA)
Florida Lyme Advocacy (FL)
Florida Lyme Disease Network (FL)
LifeLyme (FL)
Georgia Lyme Assoc (GA)
Lyme Disease Assn. of the State of Iowa, Inc. (IA)
Idaho Lyme Support Group (ID)
Mississippi Valley Lyme Disease Network (IL)
Sewill Lyme Leagues (WI, IL)
Lyme Support Group of Kansas (KS)
Massachusetts Lyme Disease Coalition (MA)
Cape Cod Lyme Disease Awareness Assn. (MA)
Maine Lyme Disease Support Group (ME)
Lyme Disease Assn. Southeastern Maryland (MD)
Midshore Lyme Disease Association, Inc. (MD)
Mid-Missouri Tick Illness Coalition (MO)
Missouri Lyme/Masters Disease Group (MO)
Green Hills Lyme Disease Support Group (MO)

Minnesota Insect Borne Disease Education Council, Inc. (MN) 
LymeNet North Metro Support Group (MN)
Lyme Disease Coalition of Minnesota (MN)
Lyme Disease Support Group of Mississippi (MS) 
Montana Lyme (MT)
The North Carolina Lyme Disease Foundation (NC)
Minot Lyme Disease Support Group (ND)
Midwest Alliance for Understanding LD (NE)
New Hampshire Lyme (NH)
Lyme Disease Action Network (NM)
Greater Raritan Lyme Support (NJ)
Lehigh Lyme League (NJ)
Long Valley Lyme Disease Support Group (NJ)
North Jersey Lyme Support (NJ)
Turn the Corner Foundation, Inc. (NY)
Hudson Valley Lyme Disease Association (NY)
Mid Westchester Lyme (NY)
Westchester Lyme Disease Support Group (NY)
Mid Hudson Lyme Disease Support (NY)
Northern Dutchess Lyme Disease Support Group (NY)
Hyde Park Lyme Disease Support Group (NY)
Voices of Lyme/NY Lyme (NY)
Oklahoma Lyme Disease Support Group (OK)
Lyme Disease Association of Ohio (OH)
Hood River Support Group (OR)
NY PENN Lyme disease Support (NY, PA)
The James Loughran Foundation, Inc. (PA)
Elk County Lyme Support Group  (PA)
Susquehanna Lyme Disease Association ( PA)
5 County Central PA Support Group (PA)
NE PA Lyme Support Group (PA)
Mid-South Lyme Disease Support Group (TN)
Mountain West Lyme Disease Support (UT)
Gear Up for Lyme (VT)
Partners in Lyme (VT)
Vermont Lyme Support (VT)
Minnesota/Wisconsin Duluth/Superior LSG (MN, WI)
Washington LD Support & Information Group (WA)
Nevada, Arizona & Utah Network Grp. (NV, AZ, UT)
US Military Lyme Support (nationwide)

Professional Groups
International Lyme & Associated Diseases Society, Inc. (ILADS) a professional medical society

Others
Author Amy Tan (Joy Luck Club)
Jordan Fisher Smith (Nature Noir)
E. Jean Carroll (author, columnist & TV writer for Sat. Night Live)
Brooke Landau – E! Entertainment, ESPN