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Lyme Disease: a Comprehensive Approach to an Evolving Threat S. HRG. 112–632 LYME DISEASE: A COMPREHENSIVE APPROACH TO AN EVOLVING THREAT FIELD HEARING OF THE COMMITTEE ON HEALTH, EDUCATION, LABOR, AND PENSIONS UNITED STATES SENATE ONE HUNDRED TWELFTH CONGRESS SECOND SESSION ON EXAMINING LYME DISEASE, FOCUSING ON A COMPREHENSIVE APPROACH TO AN EVOLVING THREAT AUGUST 30, 2012 (Stamford, CT) Printed for the use of the Committee on Health, Education, Labor, and Pensions ( Available via the World Wide Web: http://www.gpo.gov/fdsys/ U.S. GOVERNMENT PRINTING OFFICE 75–786 PDF WASHINGTON : 2012 For sale by the Superintendent of Documents, U.S. Government Printing Office Internet: bookstore.gpo.gov Phone: toll free (866) 512–1800; DC area (202) 512–1800 Fax: (202) 512–2104 Mail: Stop IDCC, Washington, DC 20402–0001 COMMITTEE ON HEALTH, EDUCATION, LABOR, AND PENSIONS TOM HARKIN, Iowa, Chairman BARBARA A. MIKULSKI, Maryland MICHAEL B. ENZI, Wyoming JEFF BINGAMAN, New Mexico LAMAR ALEXANDER, Tennessee PATTY MURRAY, Washington RICHARD BURR, North Carolina BERNARD SANDERS (I), Vermont JOHNNY ISAKSON, Georgia ROBERT P. CASEY, JR., Pennsylvania RAND PAUL, Kentucky KAY R. HAGAN, North Carolina ORRIN G. HATCH, Utah JEFF MERKLEY, Oregon JOHN MCCAIN, Arizona AL FRANKEN, Minnesota PAT ROBERTS, Kansas MICHAEL F. BENNET, Colorado LISA MURKOWSKI, Alaska SHELDON WHITEHOUSE, Rhode Island MARK KIRK, IIllinois RICHARD BLUMENTHAL, Connecticut PAMELA J. SMITH, Staff Director, Chief Counsel LAUREN MCFERRAN, Deputy Staff Director FRANK MACCHIAROLA, Republican Staff Director (II) CONTENTS STATEMENTS THURSDAY, AUGUST 30, 2012 Page Blumenthal, Hon. Richard, a U.S. Senator from the State of Connecticut, opening statement ................................................................................................ 1 Gillibrand, Hon. Kirsten E., a U.S. Senator from the State of New York .......... 2 Harris, Dwight, Burlington, CT .............................................................................. 5 Prepared statement .......................................................................................... 6 Reid, Katy, Ridgefield, CT ...................................................................................... 9 Prepared statement .......................................................................................... 10 Hopwood, Mark, Trumbull, CT ............................................................................... 13 Prepared statement .......................................................................................... 15 Stafford, Kirby C., III, Ph.D., Chief Entomologist, Connecticut Agricultural Experiment Station, New Haven, CT ................................................................. 20 Prepared statement .......................................................................................... 22 Katz, Amiram, M.D., Assistant Clinical Professor of Neurology, Yale Univer- sity, Orange, CT ................................................................................................... 24 Prepared statement .......................................................................................... 25 Petrini, Joann, Ph.D., MPH, Director of Clinical Outcomes and Health Serv- ices Research, Department of Medical Education and Research, Western Connecticut Health Network, Danbury, CT ....................................................... 32 Prepared statement .......................................................................................... 34 ADDITIONAL MATERIAL Statements, articles, publications, letters, etc.: Kris Newby, Senior Producer, UNDER OUR SKIN ...................................... 44 The LymeDisease.Org ...................................................................................... 47 Letters to Senator Blumenthal ........................................................................ 53 (III) LYME DISEASE: A COMPREHENSIVE APPROACH TO AN EVOLVING THREAT THURSDAY, AUGUST 30, 2012 U.S. SENATE, COMMITTEE ON HEALTH, EDUCATION, LABOR, AND PENSIONS, Stamford, CT. The committee met, pursuant to notice, at 10:05 a.m., in Gen Re Auditorium, University of Connecticut, Stamford, CT, Hon. Richard Blumenthal, presiding. Present: Senator Blumenthal. Also present: Senator Gillibrand. OPENING STATEMENT OF SENATOR BLUMENTHAL Senator BLUMENTHAL. Good morning, everyone. I’m going to offi- cially call to order this hearing of the U.S. Senate Committee on Health, Education, Labor, and Pensions. I want to thank Senator Tom Harkin of Iowa for giving me this opportunity. He is the chair- man of the committee. I thank the committee staff and my staff for being so cooperative and helpful this morning. And I thank all of you for being here. I know we have a diverse array of people from different areas of in- terest, but we share a common concern with a disease that has really reached epidemic proportions. There are about 40,000 cases of Lyme disease reported nationally each year. But that number is probably only about 10 percent of the actual number. One of the very pressing problems that needs to be addressed is the underreporting of Lyme disease, which re- sults in part from the under-detection and lack of adequate diag- nosis. And that, in turn, has led to divisions and schisms and dis- agreement within the scientific and medical community. You are all aware of some of the dissention that has existed. Part of our objective this morning is to bring together people who really should have a common and shared concern. The objective of bring- ing people together is also the goal of the legislation that Senator Gillibrand and I have introduced in the U.S. Senate. We have, in all, 12 sponsors, co-sponsors, of this legislation, which would estab- lish an advisory committee at the Federal level, giving patients a voice at the table, because too often, patients and victims have been marginalized in this process. The inadequacy of diagnostic tools and techniques has left a lot of those patients without a voice because they haven’t been given the proper attention. And so the advisory committee would give them a seat at the table. It would also invest in diagnostic research (1) 2 and provide for education of doctors who all too often in other parts of the country are unaware, and even in Connecticut and New York and New England fail to appreciate the need for greater attention to it. And it would also improve reporting. This bill is supported by a bipartisan coalition, I’m very proud to say. This hearing, I hope, will galvanize and energize support for it. Again, I want to thank all of you for being here, and, most espe- cially, my colleague and friend, Senator Gillibrand, who has come as far as any of us to be here today. But she has been such a con- sistent and courageous leader in this effort. I can’t tell you how much her voice means in the U.S. Senate on this subject. She has really been a champion of all of you who are victims of this disease, as well as the scientists who have credibility in this area. So I am really honored and pleased to welcome you, Senator Gillibrand, for being here today. I know your time is limited, so if you would give us the benefit of your views—and I know that she is reachable through email and many other means for anyone who doesn’t have a chance to talk to her today. But we so appreciate your being here. Thanks so much. STATEMENT OF SENATOR GILLIBRAND Senator GILLIBRAND. Thank you, Senator Blumenthal, for hold- ing this hearing. I couldn’t agree with your opening statement more. I appreciate the fact that you are leading this effort in the Senate to really shine a light on the horrible disease and the effects of the diseases caused by tick-borne illnesses. I can tell you that families across New York have been suffering, often without a diag- nosis. We have so much work to do in terms of putting a very bright light on this issue, and I think this hearing is an excellent first step in that direction. I think our legislation would go a long way in bringing relief and bringing answers and bringing more dollars for research, development, and treatment. I also want to acknowledge and thank the advocacy and support of groups from New York State that are here. We have the Tick- Borne Disease Alliance, the Empire State Lyme Disease Associa- tion, and the New York City Lyme Disease Support Group, and many support groups that are working across New York State to help raise awareness about tick-borne illnesses. We are here today to bring awareness of Lyme disease and to support Senate bill 1381 to finally get a grip on the growing epi- demic of tick-borne illnesses. From the farms of upstate New York to the beaches of Long Island to the parks in all five boroughs of New York City, tick-borne diseases are a public health crisis that truly knows no boundaries. Anyone can be a victim at any time, and it is a crisis that has been ignored for too long. According to the U.S. Centers for Disease Control, Lyme disease remains the fastest growing vector-borne infectious disease in the United States. The CDC reports 30,000 cases of Lyme disease in 2009, but it acknowledges that actual numbers may be over, as Senator Blumenthal said, 10 times as high due to underreporting. Another highly alarming factor in the growth of this disease is their place in our blood supply. The American Red Cross has now 3 confirmed at least 12 deaths nationwide from tick-borne diseases after it was transmitted by transfused blood. We need to ensure that our donor supply is thoroughly tested and free of disease to put a stop to these senseless infections. Ending these diseases
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