[Congressional Record Volume 158, Number 81 (Friday, June 1, 2012)] [House] [Pages H3393-H3395] From the Congressional Record Online through the 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 [[Page H3394]] 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 [[Page H3395]] 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. ____________________