COMMONWEALTH OF PENNSYLVANIA HOUSE OF REPRESENTATIVES HUMAN SERVICES COMMITTEE HEARING STATE CAPITOL HARRISBURG, PA MAIN CAPITOL BUILDING ROOM 60 EAST WING TUESDAY, AUGUST 30, 2 011 10:01 A.M. PRESENTATION ON HB 272 (HESS) THE LYME AND RELATED TICK-BORNE DISEASE EDUCATION, PREVENTION AND TREATMENT ACT BEFORE: HONORABLE GENE DiGIROLAMO, MAJORITY CHAIRMAN HONORABLE ROSEMARY M. BROWN HONORABLE SHERYL M. DELOZIER HONORABLE JOE EMRICK HONORABLE MARCIA M. HAHN HONORABLE SUSAN C. HELM HONORABLE THOMAS P. MURT HONORABLE BRAD ROAE HONORABLE MARK B. COHEN, DEMOCRATIC CHAIRMAN HONORABLE MICHELLE F. BROWNLEE HONORABLE PAMELA A. DeLISSIO HONORABLE EDDIE DAY PASHINSKI HONORABLE JAKE WHEATLEY Pennsylvania House of Representatives Commonwealth of Pennsylvania 2 ALSO IN ATTENDANCE: HONORABLE JOHN R. EVANS HONORABLE MATT GABLER HONORABLE C. ADAM HARRIS HONORABLE DICK L. HESS HONORABLE DAVID M. MALONEY, SR. HONORABLE MARIO M. SCAVELLO COMMITTEE STAFF PRESENT: ELIZABETH L. YARNELL MAJORITY RESEARCH ANALYST 3 I N D E X TESTIFIERS * * * NAME PAGE REPRESENTATIVE DICK HESS PRIME SPONSOR OF HB 272 .............................. 5 JULIA F. WAGNER, MBA CHAIR, LYME ACTION PA; PRESIDENT, MONTCO LYME............................... 9 JOY MANDRELL-BURDGE VICTIM OF LYME DISEASE.............................. 17 ROBERT C. BRANSFIELD, MD, DLFAPA PRESIDENT, INTERNATIONAL LYME AND ASSOCIATED DISEASES SOCIETY.....................24 HAROLD SMITH, MD EMERGENCY MEDICINE; PAST BOARD OF DIRECTORS, INTERNATIONAL LYME AND ASSOCIATED DISEASES SOCIETY; MEMBER, LYME DISEASE GUIDELINES COMMITTTEE......... 44 MIMI WAINWRIGHT, BSN, RN, CSN SCHOOL NURSE, GREEN WOODS CHARTER SCHOOL; MEMBER, PA ASSOCIATION OF SCHOOL NURSES AND PRACTITIONERS.....................53 SHAWN DeFREES, PH.D. PRESIDENT AND FOUNDER OF A BIOTECHNOLOGY COMPANY, MONTGOMERYVILLE, PA......... 61 EDWARD YOST, MD ANESTHESIOLOGIST; MEMBER, AMERICAN SOCIETY OF ANESTHESIOLOGISTS, INTERNATIONAL SPINE INTERVENTION SOCIETY, AND AMERICAN HEADACHE SOCIETY....................... 65 JERRI-LYNN WIER ATTORNEY; CONGRESSIONAL CAMPAIGN MANAGER........... 71 LISA REED GAFFNEY MOTHER OF JOSIE, VICTIM OF LYME DISEASE............ 74 4 TESTIFIERS (cont.'d): NAME PAGE JONATHAN C. GREER VICE PRESIDENT AND SECRETARY, INSURANCE FEDERATION OF PA, INC.....................81 MICHAEL YANTIS DIRECTOR OF POLICY MANAGEMENT, BLUE CROSS OF NORTHEASTERN PA....................... 85 JOHN GOLDMAN, MD INFECTIOUS DISEASE SPECIALIST, PA MEDICAL SOCIETY.................................. 88 5 1 P R O C E E D I N G S 2 * * * 3 MAJORITY CHAIRMAN DiGIROLAMO: Good morning, 4 everyone. Good to see everybody here for this meeting on 5 HB 272. 6 And I'd like to first point out, I'm 7 Representative Gene DiGirolamo. I'm the Majority Chairman 8 of the Human Services Committee, and I'd like to first give 9 all the Members a chance to identify themselves and let us 10 know what district they're from. But before I do that, I 11 would like to acknowledge Representative Dick Hess, who is 12 the prime sponsor of the bill, HB 272. And Dick, I really 13 appreciate you bringing this important issue to the 14 attention of the General Assembly and the Human Services 15 Committee. 16 REPRESENTATIVE HESS: Thank you, Mr. Chairman. 17 My name is Dick Hess. I'm a 25-year Member of 18 this House. I've served Bedford, Fulton, and Huntingdon 19 Counties for, like I said, 25 years, and this is a very 20 important piece of legislation. 21 I can't take -- I have to say this -- I can't 22 take 100 percent credit for this bill. I was second on the 23 bill last term. It was introduced by Representative 24 Phillips, a very dear friend of mine. So I'm carrying the 25 torch not only for myself but for Representative Phillips 6 1 also, who was a victim of Lyme Disease, and I'll go on 2 further about that later on. 3 Thank you, Mr. Chairman. 4 MAJORITY CHAIRMAN DiGIROLAMO: Okay. Thank you. 5 And I would also like to acknowledge my Minority 6 Chairman, Representative Mark Cohen from Philadelphia, who 7 I believe is on his way and will be here a little bit later 8 on. 9 Why don't we start with Representative Roae and 10 then work our way down. Brad. 11 REPRESENTATIVE ROAE: Good morning. 12 Representative Brad Roae, Crawford County. 13 REPRESENTATIVE MALONEY: Good morning. 14 Representative David Maloney, the 130th, Berks 15 County. 16 REPRESENTATIVE BROWN: Good morning. 17 Representative Rosemary Brown, the 189th District, 18 Monroe and Pike Counties. 19 REPRESENTATIVE HAHN: Good morning. 20 Representative Marcia Hahn from parts of 21 Northampton County. 22 REPRESENTATIVE HELM: Welcome, everyone; a great 23 crowd. 24 Sue Helm, the 104th District of Dauphin County. 25 REPRESENTATIVE BROWNLEE: Good morning. 7 1 State Representative Michelle Brownlee, 2 Philadelphia County. 3 REPRESENTATIVE DeLISSIO: Pam DeLissio, the 194th, 4 covering parts of Philadelphia and Montgomery County. 5 REPRESENTATIVE GABLER: Good morning. 6 Matt Gabler, 75th District, Clearfield and Elk 7 Counties. 8 MAJORITY CHAIRMAN DiGIROLAMO: And again, 9 Representative Gene DiGirolamo from the 18th District in 10 Bucks County. 11 And to my right and your left is Liz Yarnell, who 12 is on the Human Services Committee, on staff, and did a 13 great job in putting this hearing together. Thank you, 14 Liz. 15 John. 16 REPRESENTATIVE EVANS: Good morning. 17 Representative John Evans of the 5th Legislative 18 District in Erie and Crawford Counties. 19 REPRESENTATIVE SCAVELLO: Good morning. 20 Representative Mario Scavello, the 176th District, 21 Monroe County. I want to thank the Chairman for allowing 22 me to sit in on this hearing. 23 REPRESENTATIVE HARRIS: Representative 24 Adam Harris, the 82nd District, Juniata, Mifflin, and 25 Snyder. 8 1 MAJORITY CHAIRMAN DiGIROLAMO: Okay. Thank you. 2 Maybe to just start out with a couple of ground 3 rules. The TV cameras are on, so we are -- I don't know if 4 we're being broadcast live, but I'm sure PCN will pick us 5 up, if not live, probably at a later date. So I just want 6 to remind everybody the TV cameras are on. 7 We're on a little bit of a time constraint. We 8 have to be finished the hearing today by 12 o'clock. So 9 what I am going to do is I'm going to allow everyone to 10 testify first before we open it up for questions, and then 11 if time allows at the end of the meeting, we will ask those 12 who are still here if you would come up and answer a few 13 questions from the Committee. 14 And again I want to thank Representative Hess, 15 and I also would like to mention Representative Merle 16 Phillips. Merle retired last year, and I know 17 Representative Phillips was very interested in this issue 18 also. 19 And Lyme Disease is on the rise, as everybody 20 knows, and again, I appreciate you all being here. The 21 latest statistics we have, from 2009, is that there were 22 almost 5,000 reported cases of Lyme Disease in the State of 23 Pennsylvania, and that is, by far, the highest number of 24 any of the States in the United States. 25 We've called the hearing to discuss a critical 9 1 issue surrounding the diagnosis and treatment of this 2 disease and related tick-borne illness. And again, we 3 really appreciate that some of you have traveled a long 4 distance to be here today. 5 We all, all the Members -- and we have a really 6 good turnout. I would like to recognize Representative 7 Tom Murt from Montgomery County who just arrived. 8 We're all interested in learning more about the 9 issues and about the seriousness of the disease. I'd like 10 to extend our appreciation to Julia Wagner, who is the 11 Chair of LymeAction PA, for coordinating the speakers for 12 the meeting today. And again, I did explain, because of 13 the time limits, that we're going to have to be finished by 14 12 o'clock. So I would please ask everyone who is going to 15 testify to please stick to your allotted timeframe, okay? 16 With that, we're going to start the hearing, and 17 the first person to testify is Julia Wagner, who is the 18 Chair of LymeAction PA, and I would ask Julia to come to 19 the end of the table. 20 MS. WAGNER: Good morning, and I am very honored 21 to be here, to be able to testify on the many thousands and 22 thousands of individuals that are affected by Lyme Disease 23 in the State of Pennsylvania. 24 I come to this by way of personal experience and 25 the experience of my family, including three young children 10 1 who were devastated by this disease. I am a management 2 consultant with an MBA and a concentration in developmental 3 psychology, and I consult with CEOs and senior executives 4 of Fortune 500 companies. 5 The impact of this disease was such that I was so 6 cognitively affected that I could not string a sentence 7 together. I could no longer recognize the meaning of a 8 red light when I stopped at a traffic light. We were 9 severely affected. 10 I'm not here to talk about my family's experience 11 today, but in the attachments I have my 2007 testimony, 12 which outlines how our family imploded as a result of this 13 disease, a tick-borne disease. I'm really here to speak on 14 behalf of LymeAction PA, which is a statewide coalition of 15 the now 19 Lyme Disease support groups in Pennsylvania. It 16 has more than doubled over the past 2 or 3 years that I 17 have been involved with this, which is an indication.