Mr. Speaker, over the last district work period, my colleague Paul Tonko and I hosted a conference to bring focus to better prevention, testing, treatment, and insurance coverage for victims of Lyme and associated tick-borne diseases. This…
Mr. Speaker, over the last district work period, my colleague Paul Tonko and I hosted a conference to bring focus to better prevention, testing, treatment, and insurance coverage for victims of Lyme and associated tick-borne diseases.
This conference was constituent-driven. Over the past couple of years, I've heard from hundreds of constituents who were suffering from Lyme or who had family members of close friends suffering from this disease. Two of these constituents took the lead and organized this conference, Christina Fisk and Holly Ahern. They did a terrific job.
We had a dynamic keynote speaker, experts on the scope and the economic burden of Lyme, and a very encouraging presentation by Dr. Horowitz on a new approach for the diagnosis and treatment that identifies co-infections and other environmental hazards as the cause for chronic Lyme symptoms.
This approach could potentially unite the medical community, presently divided over whether chronic Lyme exists. We also received briefings on supporting doctors who treat chronic Lyme patients, protecting the blood
supply, new approaches to testing, and a dynamic summary by Dr. Leigner, which provides a comprehensive roadmap for the way ahead.
Last year, I was proud to support an $8.75 million increase for the better testing and reporting of Lyme, but much more needs to be done. I am submitting for the Record our conference materials, and I look forward to working with my colleagues on this vital public health issue.
A Forum on Tick-borne Diseases--
What's NEXT?
(at Skidmore College, Saratoga Springs, NY, May 21, 2012)
Congress of the United States,
House of Representatives,
Washington, DC, May 21, 2012.
Dear Friends: Welcome to the Forum on Tick-Borne Diseases--
What's Next here at Skidmore College. I am pleased that you
took the time to attend what I believe will be an informative
and thought provoking exchange of ideas from a variety of
perspectives.
As a Member of Congress representing communities in the
eastern part of New York State, I have received a number of
requests over the past year asking me to look into the
subject of Lyme and other tick-borne diseases. Lyme disease
and its co-infections are prevalent throughout the country,
with the northeast section of the US suffering especially
high incidence rates. My studies of the subject have revealed
not only the unpleasant realities of the diseases and their
impact on victims, but also the confusion and divergence of
opinions surrounding the identification, understanding, and
treatments of the diseases that are appearing with ever
increasing frequency in all our communities.
New studies, including an important one conducted at SUNY
Adirondack (State University of New York), indicate that Lyme
disease may be far more prevalent than we had originally
suspected. Additionally, other studies place the financial
burden of the disease at levels much higher than we'd
previously understood. It vs my feeling, and that of a number
of my colleagues, that closer examination of the situation is
not only warranted, but is absolutely necessary to understand
the state of the science, the needs of the victims, and the
opportunities for new initiatives. The goal is to create the
forward momentum necessary to put efforts to fix these
problems on a fast track and get some help for the victims of
these debilitating diseases.
Based on input from this Forum and other sources, I intend
to make sure that the Federal Government is doing all it can
be reasonably expected to do to move forward on all aspects
of this situation. I know there are a growing number of my
colleagues in Congress who are committed to this as well.
Together we will do all we can to achieve this goal. Thank
you and God bless you for your personal commitment to this
cause.
Very sincerely,
Chris Gibson,
Congressman,
20th District, New York.
Welcome
On behalf of the organizing committee, we would like to
welcome you to the Helen Filene Ladd Concert Hall in the
Arthur Zankel Music Center at Skidmore College, for the
LymeNEXT forum. Thank you for your participation.
We wish to extend our gratitude to Congressman Chris
Gibson, who has recognized the impact that undiagnosed and
untreated Lyme disease and the associated tick-borne
infections have had not only in his district, but also across
the state and country. Congressman Gibson has taken a
leadership role in encouraging forward thinking,
collaborative problem solving, and the search for new ideas,
to improve the lives of patients and families affected by
Lyme and other TBDs. We all hope that this forum will inspire
new initiatives in both the public and private sectors to
advance these critical issues.
We are hopeful that LymeNEXT will be only the first of many
such events that will lead to greater public awareness,
better diagnostics, and effective treatments for these
multifactorial, protean, and debilitating diseases.
Sincerely,
Christina T. Fisk,
Co-Chair.
Holly Ahern,
Co-Chair.
Organizing Committee: Steve Bulger, District Director for
Congressman Gibson; Steve Borgos, Logistics; JoAnn Borgos,
Volunteers; Mary Beth Bulger, Social Media.
Keynote Address
(By Pamela Weintraub, Executive Editor, Discover Magazine)
Into the Woods: The Patient Journey through Lyme Disease
Inspired by her own family's personal nightmares with Lyme
disease, Pamela Weintraub called upon her professional skills
as an investigative journalist and science writer to
undertake a meticulous and detailed investigation of the
elaborate and complex issues that constitute the medical,
political, cultural, and economic components of Lyme disease.
Her findings are chronicled in her powerful book, Cure
Unknown, which won the American Medical Writers Association
book competition in 2009. Her work has served to define the
varied and contentious elements that are part of all
conversations concerning Lyme disease, and her investigatory
skill and literary precision helped to uncover the real story
behind the multi-faceted Lyme ``issue''. Ms. Weintraub is
currently the Executive Editor at Discover. She has traveled
extensively around the country educating people about Lyme
disease, among other subjects, and has won numerous awards
and has been featured on dozens of major radio shows
including Leonard Lopate and Diane Rehm, to discuss
biomedicine, science, and the future. Pam's work in this
arena has earned her the respect and gratitude of thousands
of Lyme victims who feel that they have a voice through her
work.
Speakers
Holly Ahern, MS is an award winning professor of
microbiology and a science writer who has authored textbooks
on laboratory science and published numerous articles in
scientific and trade journals. Ahern has a B.S. degree and
national board certification (American Society of Clinical
Pathologists--ASCP) in medical technology, and an M.S. degree
in Molecular Biology from the University at Albany. Named an
NSF/ASM Biology Scholar in 2008, Ahern has become an
outspoken advocate for truth in science and medicine
particularly as it relates to Lyme disease. As head of a
groundbreaking undergraduate research program at SUNY
Adirondack in Queensbury NY, Ahern and her group are
currently researching the complex biology of the Lyme disease
spirochete, the incidence of bacterial and protozoal
pathogens in the Ixodes tick, and investigating enhanced ways
to destroy the disease-causing organisms.
Lorraine Johnson, JD, MBA is an attorney advocate on issues
related to the medico-legal and ethical aspects of Lyme
disease and has published over 30 peer-reviewed articles on
this topic. She earned her JD from Loyola University and an
MBA from USC. She is the Chief Executive Officer of the
LymeDisease.org and is a director and an officer of the
International Lyme and Associated Diseases Society. She sits
on the steering committee of Consumers United for Evidence-
Based Healthcare, a nationwide coalition of consumer groups
associated with the Cochrane Collaboration. She is also a
member of the international Cochrane Consumer Network and
serves as a consumer peer reviewer for Cochrane Collaboration
evidence-based protocols and reviews. She has spoken before
state legislatures, the CDC, at the Canadian government
consensus hearings on Lyme disease, and at the IDSA review
panel hearing and before the Cochrane Consumer Network.
Richard I. Horowitz, MD is a Board Certified Internist and
Director of the Hudson Valley Healing Arts Center, in Hyde
Park, New York, USA. He is a founding member of ILADS, and is
President of the International Lyme and Associated Disease
Educational Foundation (ILADEF), an organization dedicated to
the education of health professionals in the diagnosis and
treatment of tick-borne disorders. Dr. Horowitz has treated
over 12,000 chronic Lyme disease patients in the last 25
years, and has researched and published extensively on the
role of co-infections in patients with persistent symptoms.
He was awarded the Humanitarian of the Year award by the Turn
the Corner Foundation in 2007, for his ongoing work with
chronic Lyme disease. Dr. Horowitz has presented his work to
institutions, organizations, and government agencies around
the world, including ILADS conferences around the globe;
UNESCO in Paris and JNI--National Infectious Disease
conference France. Dr. Horowitz was recently invited to
consult with the top officials within the government of China
(CDC/Ministry of Health) on the difficulties of diagnosing
and treating Lyme disease and co-infections, and the efficacy
of an integrative approach to these diseases.
Daniel Cameron, MD, MPH graduated from the University of
Minnesota followed by residencies at Beth Israel Medical
Center and Mt. Sinai School of Medicine in New York. Dr.
Cameron is widely recognized for conducting epidemiologic
research while practicing medicine. He has been viewed as a
pioneer in Lyme disease as an author of practice guidelines,
analytic reviews, and clinical trials. He has published 9
peer reviewed articles based on his research in the past 5
years. Dr. Cameron led ILADS, the International Lyme and
Associated Diseases Society, to new heights as its president
from 2007 to 2009. He has testified as an expert on Lyme
disease for legislation in Connecticut, Massachusetts, and
Pennsylvania for physicians' rights to diagnose Lyme disease
using clinical judgment without state interference. He has
been interviewed as an expert on the NBC today show, Good
Morning America, Fox News, Sirius radio and in newspapers.
Dr. Cameron currently sees patients in his private practice
in Mt. Kisco, New York while continuing his research and
writing. He maintains the website www.LymeProject.com.
David A. Leiby, PhD received a B.S. in Biology from
Lafayette College, Easton, Pennsylvania, an M.S. in Biology
from Rutgers University, Camden, New Jersey, and an M.S. and
Ph.D. in Zoology from the Ohio State University, Columbus,
Ohio. He was a National Research Council, Postdoctoral
Resident Research Associate in the Cellular Immunology
Department at the Walter Reed Army Institute of Research,
Washington, D.C. For the past 19 years, Dr. Leiby has
been affiliated with the American Red Cross, where he is the
Head of the Transmissible Diseases Department at the Jerome
H. Holland Laboratory for the Biomedical Sciences in
Rockville, Maryland. He is the principal investigator for
comprehensive, multi-center epidemiologic studies of Chagas'
disease, tick-borne pathogens and malaria in blood donors.
Dr. Leiby has published over 75 refereed papers and book
chapters and is frequently invited both nationally and
internationally to speak at meetings and institutions. Dr.
Leiby also is an associate professor of Microbiology and
Tropical Medicine at the George Washington University,
Washington, D.C.
Ahmed Kilani, PhD is the President and Laboratory Director
of Clongen Laboratory. The company, founded in 1999 in
Mountain View, California, is now located in Germantown, MD.
Dr. Kilani holds a Bachelor's degree in Medical Technology, a
Master's in Clinical Science (San Francisco State University)
and a Ph.D. in Infectious Diseases and Immunity (University
of California at Berkeley, 1999). He is also board certified
nationally (American Society of Clinical Pathologists--ASCP)
and in California (Clinical Laboratory Scientist--CLS/MT).
Dr. Kilani has extensive experience in Microbiology,
Virology, Molecular and Cell Biology. The laboratory facility
in Germantown, MD was established in 2004. The company
consists of two main divisions: Clinical Diagnostics for
Infectious Diseases and Contract Research. Clongen Laboratory
holds state and national licenses in laboratory medicine
(CLIA-Certified).
Kenneth Liegner, MD is a board certified Internist with
additional training in Pathology and Critical Care Medicine,
practicing in Pawling, New York. He has been actively
involved in diagnosis and treatment of Lyme disease and
related disorders since 1988. He has published articles on
Lyme disease in peer-reviewed scientific journals and has
presented poster abstracts and talks at national and
international conferences on Lyme disease and other tick-
borne diseases. He has cared for many persons seriously ill
with chronic and neurologic Lyme disease. His work has
focused on the serious morbidity and (occasional) mortality
that can eventuate from this aspect of the illness. He has
emphasized the urgent need for widespread clinical
availability of improved methods of diagnostic testing and
for development of improved methods of treatment for Lyme
disease in all its stages. He holds the first United States
patent issued proposing application of ascaricide to deer for
area-wide control of deer-tick populations as a means of
reducing the incidence of Lyme disease.