Lyme Disease Association, Inc. PO Box 1438, Jackson, New Jersey 08527 888-366-6611
[email protected] 732-938-7215 (Fax) LymeDiseaseAssociation.org
March 2, 2016 Senator Lamar Alexander, Chair Senate HELP Committee 428 Senate Dirksen Office Bldg. Washington, DC 20510
Senator Patty Murray, Ranking Member Senate HELP Committee 428 Senate Dirksen Office Bldg. Washington, DC 20510
Dear Chairman Alexander and Ranking Member Murray, I am writing this letter to you on behalf of the national non-profit Lyme Disease Association, Inc. (LDA) and 93 additional undersigned groups representing 32 states in support of S-1503, the Lyme & TickBorne Disease Prevention, Education, and Research Act of 2015. Lyme disease has now been in the U.S. for forty-one years, yet its devastating impact has only recently begun to be publicly recognized. Meanwhile, millions of Americans have been infected, and according to the Centers for Disease Control and Prevention (CDC), 300,000 cases are newly diagnosed each year in the U.S. The CDC announced that Lyme incidence had surpassed that of HIV in the U.S. in 2009. In 2013, CDC published a paper on sudden deaths due to Lyme carditis and was so concerned, it produced an advisory video to warn physicians of the dangers. While no one is safe from the disease, CDC states children are at the highest risk of infection. LDA analysis shows that 37% of reported cases of Lyme are children from birth up to the age of 18. Despite the staggering statistics and the large number of stakeholders in the disease, Lyme voices are not being heard. S-1503 would rectify this situation by establishing a federal Tick-Borne Diseases Advisory Committee (“TBD Advisory Committee”) as supported by FACA. Establishing a TBD Advisory Committee with voting members who are not federal employees, but which includes patient representatives, advocates, medical professionals with experience with a broad range of acute and chronic Lyme disease, and scientists representing a broad spectrum of viewpoints, is essential to enable meaningful change. An advisory committee will provide an established venue for public input, open the dialogue to different viewpoints, allow presentation of all the available science, and increase transparency. Input via the TBD Advisory Committee would assist the U.S. Secretary of Health and Humans Services to coordinate federal efforts to strengthen disease surveillance and Lyme Disease Association, Inc.
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reporting, develop better diagnostic tools and tests to detect Lyme disease, create a physician-education program which incorporates the breadth of the scientific research, establish epidemiological research objectives for tick-borne illnesses, and prepare regular reports to Congress to help ensure that progress is being made.
Scientists know that Lyme disease caused by Borrelia burgdorferi and transmitted by Ixodes scapularis (deer tick) and Ixodes pacificus ticks, is increasing in case numbers, and a new study by the CDC has shown that those ticks that transmit Lyme disease are now found in 50% of the counties in the U.S. Other Borrelia strains carried by the deer tick are causing a Lyme-like disease, such as Borrelia Miyamotoi, which has been shown to be in many more ticks and is more geographically diverse than first thought. Last month, the CDC in collaboration with the Mayo Clinic and health officials from Minnesota, Wisconsin, and North Dakota reported “the discovery of a new species of bacteria, Borrelia mayonii, that causes Lyme disease in people. “ Other common ticks in the U.S. are causing human disease, such as Amblyomma americanum (lone star), Dermacentor variabilis (American dog), and Dermacentor andersoni (Rocky Mt. wood) Besides Lyme and the other Borrelia strains mentioned above, other TBD are of serious concern in the U.S., including anaplasmosis; babesiosis, bartonellosis; ehrlichiosis; Rocky Mountain spotted fever; Colorado tick fever; Q fever; tick paralysis; tularemia; Powassan encephalitis, a viral tick-borne disease with a high fatality rate; STARI- which produces Lyme-like disease with an unknown cause; tick-borne relapsing fever; Rickettsia parkeri Rickettsiosis found increasingly along the Gulf Coast and in the South; Rickettsia species 364D in the Pacific Region; and a newly discovered tick-borne virus with confirmed human cases in Missouri, Tennessee, and Oklahoma, Heartland virus, which has already been found to be present in animals in the eastern U.S, Texas, Illinois and Indiana. An important fact is that one tick bite can cause many diseases, and co-infections greatly complicate diagnosis and treatment. It is past time to enact federal legislation to help address Lyme disease—the most commonly reported vector-borne disease in the nation—and the other 16 tick-borne diseases that are spreading throughout the country. Lack of action has allowed these diseases to spread, and has allowed tens of thousands of Americans to become infected with serious diseases with devastating symptoms, disrupting patients’ lives and placing major stress on families, including financial ruin. Put simply, we cannot afford to wait any longer. We urge you to support this legislation and to add it to the list of bills you are marking up related to advances in medical innovation. Thank you. Sincerely,
Patricia V. Smith President Cc: Senator Richard Blumenthal Lyme Disease Association, Inc.
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Name of Group
Group Leader
Title
State
Lyme Disease Association, Inc. (national)
Patricia Smith
President
NJ
Military Lyme Support
Colleen Nicholson
Founder
CO
Missouri Lyme
Gary Vaught
Moderator
MO
Northern Dutchess Lyme Support Group
Lauren Kerzner
Co-facilitator
NY
Brookfield , Wolfeboro NH Lyme Support
Jeffrey Dugas
Founder
NH
Virginia Lyme Yahoo Group
Rolf Taylor
Moderator
VA
TXLDA
Teresa G Lucher
President
TX
Howard County Lyme Awareness Group
Kandice Dickover
Founder
MD
Midcoast Lyme Disease Support & Education
Paula Jackson Jones
President, Co-Founder
ME
Biting Back:Elevating Tick Awareness in Colorado
Monica White
Founder
CO
Suffering the Silence
Allie Cashel
Founder
NY
Lyme Support Network
Kimberly Frank
President
IL
Southern Oregon Lyme Disease
Sharon Lee, RN, MSN
Co-Leader
OR
Lyme Action Network
Christina Fisk
President
NY
Massachusetts Lyme Legislative Task Force
Sheila M. Statlender, Ph.D.
Coordinator
MA
Bristol County, MA Lyme Support Group
Annie LaBrie
Founder/Facilitator
MA
Mid Missouri Lyme Support Group
Naoma Coffman
President
MO
Dean Ctr. for Tick Borne Illness at Spaulding Rehab Hosp.
Brandi Dean
Founder
MA
Mohawk Valley Lyme Support Group
Renee Kopek, RN
Co-Founder
NY
Lyme Alliance of the Berkshires
Kenneth Mercure
Director
MA
LymeDisease.org
Phyllis Mervine
President
CA
Lyme Loonies
David Skidmore
President
NY
LDA RI Chapter
Julie Merolla
Chair
RI
Cortland County Lyme Disease Support Group
Laurie Tebbe
Organizer/Educator
NY
Charles E. Holman Morgellons Disease Foundation
Cindy Casey-Holman
RN, Director
TX
Bay Area Lyme
Linda Giampa
Executive Director
CA
Lyme Disease Assn. of Southeastern PA, Inc.
Douglas W. Fearn
President
PA
Memphis Tennessee Lyme Network
Karen Angotti
Leader
TN
Mendocino County Lyme Disease Support Group
Chiah Rodriques
Founder
CA
Ithaca Area Lyme Support Grp
Theresa Morehouse
Founder
NY
New York City Lyme Support Group
Ellen Lubarsky
Group leader
NY
Oregon Lyme Disease Network
Theresa Denham
founder/president
OR
OLDN Portland
David Johnson
Support leader
OR
LymeQuest Support Group & Advocacy Project
Jeannine Phillips
President & Founder
NJ
Southern Tier Lyme Support
Colleen Houck
Founder
NY
Arizona Lyme Disease Association (AzLDA)
Larry S. Levy
Chair
AZ
MaineLyme (501 C3)
Constance Dickey
President
ME
The Greater Danbury Lyme Disease Support Group
Pat Bartlett
Founder/Facilitator
CT
Georgia Lyme
Mindy Abel
Moderator
GA
TxLyme Yahoogroup
Patricia W. Ricks
Owner/moderator
CA
Lyme Disease Association, Inc.
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Lyme Aid - Santa Rosa
Karen Miller
Facilitator/Founder
CA
Hudson Valley Lyme Disease Association
Jill Auerbach
Chairperson
NY
Lyme Connection
Karen Gaudian
Founder/ Co chair
CT
Hand in Hand for Lyme Disease Inc.
Laura Watt-Closser
Vice President
MA
Mid-Columbia Lyme Support Group
Mary Jane Heppe
Co-Leader
OR
LYME 411
Nancy Bourassa
President
NH
Foothills Lyme Disease Support Group
Virginia Ward
Group Facilitator
CA
New Paltz Lyme Wellness Series
Meredith Johnson
Wellness Counselor & Educator
NY
Lyme Disease Society (PA-based volunteer advocacy grp)
Luke Halinski
Director
PA
Cape Cod Lyme Disease Support Group
Lisa C Freeman RNC BSN
Group Leader
MA
Westerm WI Lyme Education & Support Group
Paula Warner
Leader
WI
Focus On Lyme
Tammy Crawford
Executive Director
AZ
Kenneth B. Liegner, M.D.,P.C.
Kenneth B. Liegner, M.D.
Physician
NY
Tick Free Beacon
Anna Sullivan
Co-Founder
NY
Lyme Association of Greater Kansas City, Inc.
Ila Utley
President
KS
Lyme Support Group of Martha's Vineyard
Enid Haller, MSW, Ph.D.
Group leader
MA
Lyme Center of Martha's Vineyard
Enid Haller
President
MA
Indiana Lyme Support Group
Dan Lentz
Moderator
IN
Massachusetts Lyme
Sharon Hawkes
Moderator
MA
Journey Through Challenge
David R Thomas
CEO/owner
PA
Lyme Support Group of Lancaster County, PA
Rita Rhoads, MPH, CRNP
Group Leader
PA
Sage Femme ~ Wise Woman Care
Hilary Schlinger, CNM
President
NM
A Hope 4 Lyme, Inc.
Linda Wales
Treasurer/Director
NY
Gordon Medical Associates
Eric Gordon MD
CEO
CA
Green medicine in Wisconsin LLC
Kevin Green M.D.
owner
WI
Crossroads Wellness Center
Roberta Van Zant, D.O.
physician
IL
Montana Lyme Group
Kathleen C Boyle
Moderator
MT
Tanager Primary Care, LLC
Tadd Maxfield, DO
President
OH
Lynn Durand, MD
Lynn Durand, MD
physician
NH
Union Square Medical Associates
Raphael Stricker, MD
Medical Dir./Int.Medicine
CA
Wisconsin Lyme Support
Mike Nickel
Moderator
WI
Pennsbury Medical Practice
Marty Bacsik
Physician Assistant
PA
Robert C Bransfield, MD, PC
Robert C Bransfield, MD, DLFAPA
President
NJ
Lyme Group North - Lafayette
Valarie Murphy
Facilitator
CO
Madison Lyme Support Group
Alicia Cashman
Leader
WI
Ulster County Lyme Support Group
Rick Vanden Heuvel
Co-chair
NY
Birch Tree Healing Arts
Laurie Radovsky, M.D.
partner
MN
Winston Salem Lyme Disease Support Group
Teresa Simmons
Facillitator
NC
Rex G Carr, MD
Rex G Carr, MD
Rex G Carr, MD
NH
Mt Valley Lyme Disease Coalition
Rhonda Buker
Co-founder
ME
Fox Valley Wellness Center/Midwest Hyperbarics
Steven Meress MD
President
WI
Newtown Lyme Disease Task Force
Maggie Schaefer
Co-chair
CT
St. Louis Park Lyme Support Group
Mary A Ryken Griffin, MD
co-founder
MN
Lyme Disease Association, Inc.
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Florida Lyme Advocacy
Lori Hoerl
Founder and Director
FL
South Central PA Lyme Forum
Mrs. Diana Holtry
Facilitator
PA
Linda L. Williams, M.D.
Linda Williams
M.D., Owner
WA
Minnesota Lyme Association
Brenda Peltier
Secretary
MN
Holistica Integrative Care
Julie Barter ND
LLND
CO
UNH Lyme Disease Research Group
Eva Sapi, PhD
Director
CT
Bremer County Area Lyme Disease Support Group
Kris Brunkhorst
Coordinator
IA
Global Lyme and Invisible Illness Organisation
Lisa Hilton
Co Founder
WI
Mid Hudson Lyme Disease Support Group
Rachel Dildilian
Facilitator
NY
Family Connections Center for Counseling
Sandra K. Berenbaum, LCSW, BCD
Owner
CT
Sturbridge Lyme Awareness of MA (S.L.A.M.)
Trish McCleary
Co-Founder
MA
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