[Congressional Record (Bound Edition), Volume 158 (2012), Part 6]
[House]
[Pages 8168-8170]
[From the U.S. Government Publishing Office, www.gpo.gov]




                 BRINGING FOCUS TO TICK-BORNE DISEASES

  (Mr. GIBSON asked and was given permission to address the House for 1 
minute and to revise and extend his remarks.)
  Mr. GIBSON. 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.

[[Page 8169]]



                    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 is 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

[[Page 8170]]

     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.

                          ____________________