Legislative Budget and Finance Committee

Transcription

1 Legislative Budget and Finance Committee A JOINT COMMITTEE OF THE PENNSYLVANIA GENERAL ASSEMBLY Offices: Room 400 Finance Building, 613 North Street, Harrisburg Mailing Address: P.O. Box 8737, Harrisburg, PA Tel: (717) Fax: (717) Web: SENATORS ROBERT B. MENSCH Chairman JAMES R. BREWSTER Vice Chairman MICHELE BROOKS THOMAS McGARRIGLE CHRISTINE TARTAGLIONE JOHN N. WOZNIAK REPRESENTATIVES ROBERT W. GODSHALL Secretary JAKE WHEATLEY Treasurer STEPHEN E. BARRAR JIM CHRISTIANA SCOTT CONKLIN PETER SCHWEYER Cost Estimates to Implement the Recommendations of the Task Force on Lyme Disease and Related Tick-borne Diseases EXECUTIVE DIRECTOR PHILIP R. DURGIN Conducted Pursuant to Act October 2016

2 Table of Contents Report Summary... S-1 I. Introduction... 1 II. Background... 3 III. Prevention Recommendations IV. Education and Awareness Recommendations V. Surveillance Recommendations VI. Appendices Page A. Lyme and Related Tick-Borne Disease Surveillance, Education, Prevention, and Treatment Act, Act B. Number of Lyme Disease Cases by State C. Recommendations of the Task Force on Lyme Disease and Related Tick-Borne Diseases D. Virginia s Brochure on Preventing Tick-borne Diseases E. Emerging Tick-Borne Diseases i

3 Summary Lyme disease is the most common tick-borne infection in both North America and Europe, with estimates of 300,000 cases per year in the United States alone. In 2014, Pennsylvania had more confirmed cases of Lyme disease than any other state in the nation. Although concentrated in the southeastern portion of the Commonwealth, every county in Pennsylvania has reported at least one confirmed case of Lyme disease. Lyme disease is transmitted to humans through the bite of infected blacklegged ticks. These ticks, which may only be the size of a pin head, are usually found in wooded areas or in areas of tall grass. Patients treated with appropriate antibiotics in the early stages of Lyme disease usually recover rapidly and completely. If left untreated, or if the initial treatment is unsuccessful, the infection can spread to joints, the heart, and the nervous system, and in some cases, can be fatal. In recognition of the seriousness of the Lyme disease problem in Pennsylvania, on June 29, 2014, the General Assembly enacted Act , the Lyme and Related Tick-Borne Disease Surveillance, Education, Prevention and Treatment Act. The act directed the Department of Health to establish a Task Force on Lyme disease and related tick-borne diseases. Act 83 required the Task Force to issue a report with recommendations to the Secretary of Health within one year of its first meeting. In September 2015, the Task Force issued its report, including 16 recommendations. 1 The final recommendation was for the Legislative Budget and Finance Committee to provide a useful estimate of costs for key recommendations contained in this report and identify any potential sources of public or private grant funding. In the chart beginning on page S-4, we present our cost estimates for each of the Task Force s recommendations on a five-year basis. More detailed information on initial and subsequent year costs can be found in the report text. We estimated no additional cost for activities that could reasonably be expected to be incurred as part of an organization s routine activities (e.g., mowing grass and mulching playgrounds on school properties). Determining estimated costs required us to make some assumptions, either because the data needed was not available (e.g., what local parks have already done to address Lyme disease concerns) or because the recommendations themselves were not specific (e.g., as to what constitutes a statewide educational campaign). We worked with various members of the Task Force to try to develop reasonable assumptions in these areas. 1 An exhibit of the Task Force s recommendations in their entirety may be found in Appendix C of this report. S-1

4 In carrying out this study, we also found: In 2014, Pennsylvania had the most confirmed cases of Lyme disease of any state in the nation. Pennsylvania has had the most confirmed cases of Lyme disease of any state in five out of the past six years. Lyme disease can be difficult to diagnose because it shares symptoms with several other diseases and because Lyme disease tests are frequently inaccurate, especially if done soon after receiving the infection (i.e., before the antibodies the tests look for are present). Many organizations and institutions are researching new tests to improve the accuracy of Lyme disease detection. Although Lyme disease can often be treated successfully with a two-tofour week course of antibiotics, some patients may continue to experience symptoms that last six months or more. The medical community is divided on how to prevent and treat such long-term cases. The PA School Nurses Association does not regard Lyme disease as a major issue in school nursing. The Department of Health suggests using the Pennsylvania Prepared Learning Management System for disseminating information about Lyme disease to school nurses and other medical professionals. The Pennsylvania Game Commission (PGC) informed us that one of the three factors that impact how they manage deer in Pennsylvania is the interaction between deer herds and humans. While interaction is mostly thought of in terms of agriculture and road safety, it can also include concerns about Lyme or other diseases. The U.S. Department of Agriculture has developed a 4-Poster device that can apply insecticides to deer. Two studies in Maryland and Texas have shown a 90 percent reduction in tick populations after the devices were installed. The devices are also used in certain areas with a high incidence of Lyme disease in New England. Normal maintenance (mowing lawns, mulching playgrounds, and removing leaf debris) can do much to reduce the danger of Lyme disease at schools and parks. Using DEET-based repellants, wearing Permethrintreated clothing, posting weather-resistant Lyme disease awareness signs, and providing information on how to prevent tick bites at trail heads and other places where people may encounter ticks, are other low-cost preventative measures. Spraying to kill ticks, while effective for short periods, has limited long-term value and poses significant environmental concerns. Lyme disease public awareness campaigns in other states have received very little state funding. Because of this, Lyme disease awareness campaigns in other states were very limited in scope. Much information is already available for both the public and medical professionals at web sites S-2

5 such as those hosted by the PA Department of Health, the Centers for Disease Control and Prevention, and others. Compared to other states with large numbers of cases of Lyme disease, Pennsylvania receives little in federal Lyme disease grant money. S-3

6 Costs Associated With Recommendations Over Five Years Recommendation Associated Costs Minimum Maximum Note Prevention Recommendations Prevention 1: Develop and implement a protocol Minimum represents low number for training for school and funding strategy for schools located in nurses. Maximum includes training plus insect repellant high-risk areas to implement personal protec- $15,000 $2,639,500 clothing for 2,000 outdoor maintenance workers and a tion and property actions. Prevention 2: Develop and implement a protocol for federal, state, and local park staff and properties to include communicating risk awareness (tick presence, tips for personal protection) and taking property actions. Prevention 3: Develop and implement a standard brochure (based on the Virginia model) that physicians ideally would provide to patients. Prevention 4: Develop and implement strategy to reduce risk of transfusion transmitted babesiosis (TTB) resulting from donors with tick-borne infection. Education and Awareness Recommendations (E&A) E&A 1: Develop and implement comprehensive multimedia public awareness campaign targeting the general public and at-risk population. E&A 2: Develop and implement an initial and ongoing education program for healthcare providers. Surveillance Recommendations Surveillance 1: (A): Adjust and periodically review the Pennsylvania notifiable disease list. (B): Report TBDs not included on the Pennsylvania notifiable disease list. $85,350 $25,217,550 $772,000 $2,197,000 $0 $0 $0 $3,200,000 (for one campaign over a 5-year period) $11,525,000 (for a campaign every year for a 5-year period) $7,500 $7,500 4-poster deer insecticide device at 500 public schools. Minimum is for CDC Lyme disease signs at 4,000 PA local parks. Maximum also includes insect repellant clothing and an average of two 4-poster deer insecticide devices at each local park greater than 10 acres and an average of 12 4-poster devices at each of PA s 121 state parks. Minimum is for 100 brochures to be printed and mailed to each family practice physician each year. Maximum also includes one visit a year to each general practice by someone competent to speak on Lyme disease. The CDC and FDA have responsibility for the safety of the blood supply. Minimum relies on existing media avenues (i.e., blasts, PSAs). Maximum includes a campaign similar to the DOH s 2009 prevention and vaccination awareness campaign for the H1N1 flu vaccine (e.g., development of the campaign by media consultants and paid media placements on TV, radio, online, and transit posters). Costs for an educational symposium. Assumes information will be presented primarily through links at PA DOH s existing website. $0 $0 This is currently a routine function of DOH. S-4

7 Costs Associated With Recommendations Over Five Years (Continued) Recommendation Associated Costs Minimum Maximum Note Surveillance 2: Increase the public, medical, The minimum number is derived from an estimate provided by DEP and then extrapolated by LB&FC staff to and scientific community s awareness of tick populations and the diseases they carry $1,822,000 $5,093,000 provide a five-year estimate. The maximum is the highest of three different levels of environmental surveys. through a broad and comprehensive statewide environmental survey. Surveillance 3: Earmark state budgeted appropriations to conduct research and share information for tick distribution, control, infectivity rates, and pathogen load. Surveillance 4: Obtain funding to support observational epidemiologic studies to provide more detailed data on the burden and cost of TBDs among Pennsylvania residents. Surveillance 5: Provide annual updates for, and enhance availability of, a broad array of diagnostic tests for tick-borne disease, as well as encourage the development of innovative and more accurate diagnostic tests. Surveillance 6: Improve healthcare provider and veterinarian participation in tick-borne disease surveillance. Surveillance 7: Enhance and ensure tick-borne disease surveillance case investigations used by local health department and health district staff. Surveillance 8: Use a centralized, publically-accessible website to disseminate summaries of human, other animal, and ecologic tick-borne disease surveillance data at a statewide and county level. $0 $0 No state funds its own research. Federal funding, however, is available through the CDC. $8,751,500 $8,751,500 Estimate is the cost for a five-year study. $15,000 $37,500 $12,000,000 $60,000,000 $0 $0 $200,000 $225,000 DOH currently conducts Lyme disease tests a year at its laboratory, at a cost of $15 - $25 per test. Our estimate assumes a tenfold increase in the number of tests DOH conducts. New testing approaches are already underway at multiple laboratories. Assumes an average practice size of five physicians and that all family practices already have at least a basic electronic record systems in place that could be modified to automatically report Lyme disease cases. Costs would likely be significantly lower on a per disease basis if physician practices took the opportunity to include additional diseases in the new reporting module. Cost to add a few additional questions to the survey questionnaire is minimal. Estimates based on costs to implement DEP s existing website for West Nile Virus. S-5

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9 I. Introduction The Lyme and Related Tick-borne Disease Surveillance, Education, Prevention, and Treatment Act, Act , 1 directed the Department of Health to establish a Task Force on Lyme Disease and Related Tick-borne Diseases (Task Force). The Task Force was to make recommendations to the Department of Health for the Commonwealth to consider, primarily in the areas of education and awareness, prevention, and surveillance. One recommendation of the Task Force on Lyme Disease and Related Tickborne Diseases was to obtain an independent implementation cost analysis of its recommendations from the Legislative Budget and Finance Committee (LB&FC). The LB&FC adopted this as a study topic in late Methodology Much of our report is based on information provided by the Pennsylvania Department of Health and the federal Centers for Disease Control and Prevention. We also spoke to officials from the Pennsylvania Department of Agriculture; Pennsylvania Department of Conservation and Natural Resources; Pennsylvania Game Commission; Pennsylvania Department of General Services; Pennsylvania Nurses Association; Maryland Center for Zoonotic and Vector-borne Diseases; Connecticut Department of Public Health; New York State Department of Health; New Jersey Department of Health; Maine Department of Health and Human Services; Wisconsin Department of Health Services; Virginia Department of Health; Minnesota Department of Health; New Hampshire Department of Health and Human Services; Rhode Island Department of Health; Vermont Department of Health; Delaware Department of Health and Social Services; Pennsylvania Commonwealth Media Services; PPO&S, Inc. (Partnership of Packer, Oesterling & Smith, Inc., integrated marketing communications); the Pennsylvania State University; and the National Parks Service. We also obtained information from various stakeholder and advocacy groups concerned with Lyme disease issues, including the Lyme Disease Association of Southeastern Pennsylvania, Inc. Acknowledgements We would like to thank the Pennsylvania State University; the Lyme Disease Association of Southeastern Pennsylvania; and the Pennsylvania Departments of Agriculture, Conservation and Natural Resources, and General Services, and the 1 See Appendix A. 1

10 Pennsylvania Game Commission for their excellent cooperation in providing information to complete this report. Important Note This report was developed by Legislative Budget and Finance Committee staff. The release of this report should not be construed as indicating that the Committee members endorse all the report s findings and recommendations. Any questions or comments regarding the contents of this report should be directed to Philip R. Durgin, Executive Director, Legislative Budget and Finance Committee, P.O. Box 8737, Harrisburg, Pennsylvania

11 II. Background Lyme disease is the most common tick-borne infection in both North America and Europe. Approximately 30,000 cases are reported each year by state health departments across the United States. However, based on Lyme disease testing by commercial laboratories and health insurance claims data, the Centers for Disease Control and Prevention (CDC) estimates the cases are underreported by a factor of ten, and the actual number of cases may be closer to 300,000 per year. Caused by the bacterium Borrelia burgdorferi, Lyme disease is transmitted to humans through the bite of infected blacklegged ticks. These ticks are usually found in wooded areas or in grassy areas that abut the woods. They can also be carried by animals onto lawns and gardens and into houses by pets. In general, a tick must be attached to a human from 36 to 48 hours before transmitting the Lyme disease bacteria, although some believe the disease may be transmitted in as few as 24 hours. Origins There are certain high-risk populations for Lyme disease, including: individuals living in areas with high concentrations of Lyme and other tick-borne diseases (TBDs); school-aged children (ages 5-14); individuals in outdoor occupations; outdoor recreationists; and immuno-compromised persons. Lyme disease was first recognized in 1975, after researchers investigated unusually large numbers of children being diagnosed with juvenile rheumatoid arthritis in Lyme, Connecticut, and two neighboring towns. The investigators discovered that most of the affected children lived near wooded areas likely to harbor ticks. They also found that the children s first symptoms typically started in the summer months coinciding with the height of the tick season. Further investigations resulted in the discovery that tiny deer ticks infected with a spiral-shaped bacterium or spirochete (which was later named Borrelia burgdorferi) were responsible for the outbreak of arthritis in Lyme. Ordinary wood ticks and dog ticks do not carry the infection. 3

12 Symptoms Typical symptoms include fever, headache, fatigue, chills, muscle and joint aches, and a characteristic bulls-eye skin rash called erythema migrans. This rash occurs in about 70 to 80 percent of infected people and appears anywhere from three to 30 days after a tick bite. Left untreated, infection can spread to the joints, heart, and nervous system. In some cases, Lyme disease can be fatal. Lyme disease is diagnosed based on symptoms, physical findings (e.g., rash), blood tests, and the possibility of exposure to infected ticks. Other signs and symptoms of Lyme disease that can occur days or months after being bitten include: severe headaches and neck stiffness; arthritis with severe joint pain and swelling; rashes on other parts of the body; facial or Bell s palsy; pain in tendons, muscles, joints, and bones; heart palpitations; dizziness; shortness of breath; inflammation of the brain and spinal cord; nerve pain; pain, numbness, or tingling in hands or feet; and short-term memory problems. Diagnosis/Treatment/Prevention Diagnosis. According to the CDC, Lyme disease diagnosis should take into account the patient s history of possible tick exposure, signs and symptoms of the illness, and the results of blood tests performed to measure the body s production of antibodies to Lyme disease bacteria. There is a two-stage testing process to measure antibodies, but it typically takes four to six weeks for them to develop. Therefore, these tests must be interpreted based on the length of infection. Widespread concern exists over the reliability of Lyme disease tests. CDC currently recommends a two-step process when testing blood for evidence of antibodies against the Lyme disease bacteria. Both steps can be done using the same blood sample. The first step uses a testing procedure called EIA (enzyme immunoassay) or IFA (indirect immunofluorescence assay). If this first step is negative, no further testing of the specimen is recommended. If the first step is positive or indeterminate (sometimes called equivocal ), the second step should be performed. The second step uses a test called an immunoblot test, or more commonly, a Western blot test. Results are considered positive only if both the EIA/IFA and the immunoblot are both positive. The CDC reports these tests have very good sensitivity. That said, the CDC also acknowledges that some people who receive antibiotics early in the disease may not develop antibodies or may only develop them at levels too low to be detected by the test. Also, because antibodies against Lyme disease bacteria usually take a few 4

13 weeks to develop, tests performed before this time may be negative even if the person is infected. In this case, if the person is retested a few weeks later, they should have a positive test if they have Lyme disease. Others, however, believe the two-tiered testing approach recommended by the CDC is seriously flawed, noting that the initial screening test often fails to identify patients who have Lyme disease and the two tests often contradict each other. Or as reportedly stated by Dr. John Aucott, who is developing a new Lyme disease test at John Hopkins University School of Medicine, the antibodies tests are wrong so often, you might as well flip a coin. Treatment. Patients treated with appropriate antibiotics in the early stages of Lyme disease usually recover rapidly and completely. Antibiotics commonly used for oral treatment include doxycycline, amoxicillin, or cefuroxime axetil. Patients with certain neurological or cardiac forms of illness may require intravenous treatment with drugs such as ceftriaxone or penicillin. Patients who are treated for Lyme disease with the CDC s recommended twoto-four week course of antibiotics may have continuing symptoms of fatigue, pain, or joint and muscle aches when treatment is completed. A small minority of patients may experience symptoms that last longer than six months. This condition is referred to as Chronic Lyme disease (CLD) or Post-treatment Lyme Disease Syndrome (PTLDS). The cause of PTLDS is not known, and the medical community is of two minds on the issue. Many providers believe these long-term symptoms come from lingering damage to tissues and the immune system occurring during the period of infection or other infections, such as Campylobacter, Chlamydia, and Strep, that have similar auto-immune responses. Other healthcare professionals believe the lingering symptoms reflect persistent infection from the Borrelia burgdorferi virus. The CDC has acknowledged that recent animal studies have given rise to questions that require further research and notes that clinical studies are ongoing to determine the cause of PTLDS in humans. To minimize the chances of a persistent infection, the International Lyme and Associated Diseases Society (ILADS) typically recommends a more aggressive and longer antibiotic treatment for patients than recommended by the CDC. 1 In particular, ILADS recommends prompt prophylaxis with doxycycline mg twice daily for a minimum of 20 days for all Ixodes tick bites in which there is any evidence of feeding. ILADS recommends against a single 200 mg dose of doxycycline. The ILADS also recommends extending treatment in patients who remain 1 The CDC website refers readers to the 2006 Guidelines for treatment developed by the Infectious Diseases Society of America for detailed recommendations on treatment. The IDSA is currently in the process of updating its guidelines. 5

14 symptomatic after initial therapy, an approach which the CDC does not support, citing concerns that long-term antibiotic treatments can be dangerous. The average annual cost to treat Lyme disease in the U.S. is estimated at over $3 billion. Prevention. Steps to prevent Lyme disease include using insect repellent and insect-repellent clothing, removing ticks promptly, applying pesticides to tick habitat, reducing tick habitat, and reducing the number of the mammals, such as deer and mice, that carry ticks. 2 Incidence of Lyme Disease Lyme disease is concentrated in the northeastern United States and the upper Midwest. According to the CDC, 96 percent of cases are from 14 states: Connecticut, Delaware, Maine, Maryland, Massachusetts, Minnesota, New Hampshire, New Jersey, New York, Pennsylvania, Rhode Island, Vermont, Virginia, and Wisconsin. All but two of these states are in the northeast. Table 1 shows the number of confirmed Lyme disease cases in those 14 states. Pennsylvania had the most cases in 2014, and nearly 3,000 more cases than the next closest state, Massachusetts. From 2009 to 2014, Pennsylvania had more confirmed cases of Lyme disease than any other state five out of six years. From 2005 through 2013, Pennsylvania has had a somewhat stable number of confirmed Lyme disease cases, ranging from a low of 3,242 cases in 2006 to a high of 4,981 in However, in 2014, there were 6,470 confirmed cases, an increase that other states did not experience. 2 A Lyme disease vaccine is no longer available. The vaccine manufacturer discontinued production in 2002, citing insufficient consumer demand. The vaccine required three doses, and the protection it provided diminished over time. 6

15 Table 1 Top 14 States by Confirmed Cases State Pennsylvania 4,287 3,242 3,994 3,818 4,950 3,298 4,739 4,146 4,981 6,470 Massachusetts 2,336 1,432 2,988 3,960 4,019 2,380 1,801 3,396 3,816 3,646 New York 5,565 4,460 4,165 5,741 4,134 2,385 3,118 2,044 3,512 2,853 New Jersey 3,363 2,432 3,134 3,214 4,598 3,320 3,398 2,732 2,785 2,589 Connecticut 1,810 1,788 3,058 2,738 2,751 1,964 2,004 1,653 2,111 1,719 Maine ,127 1,169 Wisconsin 1,459 1,466 1,814 1,493 1,952 2,505 2,408 1,368 1, Virginia Maryland 1,235 1,248 2,576 1,746 1,466 1, , Minnesota ,238 1,046 1,063 1,293 1, , New Hampshire , ,002 1, Rhode Island Vermont Delaware United States 23,305 19,931 27,444 28,921 29,959 22,561 24,364 22,014 27,203 25,359 Source: Developed by LB&FC staff with information from the CDC (see also Appendix B). Exhibit 1 shows the significant increase in confirmed Lyme disease cases in Pennsylvania during the 2012 to 2016 period. Because of this increase, the Commonwealth accounted for just over a quarter of all confirmed cases of Lyme disease in Exhibit 1 Lyme Disease Confirmed Cases, Top Five States ,000 6,000 5,000 4,000 3,000 2,000 1, Pennsylvania Massachusetts New York New Jersey Connecticut Source: Developed by LB&FC staff with data from the CDC. 7

16 Pennsylvania was also in the top five states in terms of Lyme disease incidence rates in 2014, as shown in Table 2. In that year, there were just over 50 cases for every 100,000 people in the Commonwealth. Maine had the highest incidence rate of all states, with 88 cases for every 100,000 residents. If the current trend continues, we would expect to see the incidence rate in Pennsylvania to increase to just over 140 by Table 2 Lyme Disease Incidence Rates Per 100,000 Population Top 14 States Maine Vermont Massachusetts Rhode Island Pennsylvania Connecticut New Hampshire Delaware New Jersey Wisconsin Minnesota Maryland New York Virginia United States Source: Developed by LB&FC staff with information from the CDC. Exhibit 2 illustrates this point by comparing the five states with the highest incidence rates. Exhibit 2 Lyme Disease Incidence Rates, , Top Five States Maine Vermont Massachusetts Rhode Island Pennsylvania Source: Developed by LB&FC staff with information provided by the CDC. 8

17 The incidence rate is significantly higher in Pennsylvania than in the country as a whole. Exhibit 3 shows that the rate in PA is nearly five times that of the rest of the country. Exhibit 3 Lyme Disease Incidence Rates Per 100,000 Population Pennsylvania Compared to U.S Pennsylvania United States Source: Developed by LB&FC staff with information from the CDC. In 2014, within Pennsylvania, the highest number of confirmed cases of Lyme disease could be found in Allegheny County, at 822 (this high figure is likely due to the enhanced Lyme surveillance activities that were conducted there in 2014). The next highest county, Butler, had 412 confirmed cases, followed by Montgomery, York, Bucks, and Clearfield. Table 3 below shows the number of confirmed cases for all Pennsylvania counties in

18 Table 3 Number of Confirmed Cases of Lyme Disease in Pennsylvania Counties, 2014 County Cases County Cases County Cases Allegheny 822 Monroe 102 Carbon 41 Butler 412 Clarion 101 Snyder 40 Montgomery 384 Adams 91 Schuylkill 36 York 304 Cambria 91 Washington 36 Bucks 287 Bradford 90 Union 35 Clearfield 273 Huntingdon 87 Perry 34 Westmoreland 254 Franklin 84 Juniata 31 Luzerne 216 Northampton 84 Mercer 27 Chester 200 Lebanon 81 Montour 27 Cumberland 200 Mifflin 74 Fulton 25 Centre 195 Susquehanna 73 Tioga 24 Dauphin 181 Bedford 68 Cameron 23 Delaware 180 Lackawanna 68 Potter 19 Jefferson 176 Beaver 67 Lawrence 18 Armstrong 174 Elk 67 Crawford 16 Indiana 160 McKean 61 Somerset 14 Lancaster 153 Clinton 60 Warren 13 Berks 150 Northumberland 59 Fayette 12 Lehigh 140 Venango 59 Forest 12 Lycoming 140 Erie 55 Greene 5 Blair 114 Pike 51 Sullivan 5 Columbia 106 Wayne 49 Philadelphia 105 Wyoming 46 Source: Developed by LB&FC staff with information from the CDC. Of the 10 counties in the United States with most total confirmed Lyme disease cases from 2000 through 2014, three are in Pennsylvania: Chester, Bucks, and Montgomery Counties (see Table 4). 10

19 Table 4 Top 10 Counties Number of Confirmed Cases State County Total New York Dutchess 1,086 1,121 1,720 1,283 1,076 1, , ,660 Pennsylvania Chester ,983 Connecticut Fairfield 1,342 1,146 1, ,650 Massachusetts Middlesex ,023 7,662 Pennsylvania Bucks ,232 Pennsylvania Montgomery ,708 New York Columbia ,586 New Jersey Morris ,568 New York Orange ,094 Connecticut New London ,505 Source: Developed by LB&FC staff with information from the CDC. Legal Background Lyme disease is most prevalent in Southeastern Pennsylvania, but it is found and is increasing across this Commonwealth. With that in mind, the General Assembly desired: To provide the public with information and education to create greater public awareness of the dangers of and measures available to prevent, diagnose and treat Lyme disease and related maladies. To ensure that: Health care professionals, insurers, patients, and governmental agencies are educated about the broad spectrum of scientific and treatment options regarding all stages of Lyme disease and related tick-borne illnesses. Health care professionals provide patients with information about the broad spectrum of scientific and treatment options regarding all stages of Lyme disease and related tick-borne illnesses to enable patients to make an informed choice as part of informed consent and to respect the autonomy of that choice. Government agencies in this Commonwealth provide information regarding the broad spectrum of scientific and treatment options regarding all stages of Lyme disease and related tick-borne illnesses. A system is established for tick surveillance. 11

20 Thus, the Lyme and Related Tick-Borne Disease Surveillance, Education, Prevention, and Treatment Act, Act , was enacted on June 29, This act directed the Department of Health to establish a task force on Lyme disease and related tick-borne diseases. The task force was to make recommendations to the Department regarding: The surveillance and prevention of Lyme disease and related tick-borne illnesses in this Commonwealth. Raising awareness about the long-term effects of the misdiagnosis of Lyme disease. Development of a program of general public and health care professional information and education regarding Lyme disease which shall include the broad spectrum of scientific and treatment options regarding all stages of Lyme disease and related tick-borne illnesses. Cooperation with the Pennsylvania Game Commission to disseminate information to license-holders and the general public. Cooperation with the Department of Conservation and Natural Resources to disseminate information to the general public and visitors of state parks and lands. Cooperation with the Department of Education to: Disseminate information to school personnel and parents, guardians, and students. Determine what role schools may play in the prevention of Lyme disease, including, but not limited to, integrated pest management strategies, prompt removal and reporting of tick removals to parents, guardians, and state officials. Update policies to recognize signs or symptoms of Lyme disease and related tick-borne illnesses as health conditions potentially requiring accommodations. An active tick collection, testing, surveillance, and communication program. Act 83 required the task force to be composed of the following 21 individuals: The Secretaries of Health, Education, and the Commonwealth, or a designee. The Deputy Secretary for Parks and Forestry in the Department of Conservation and Natural Resources, or a designee. The Director of the Bureau of Information and Education of the Pennsylvania Game Commission, or a designee. 12

21 Two Pennsylvania licensed physicians who are knowledgeable concerning treatment of Lyme disease and related tick-borne illness and who are members of the International Lyme and Associated Diseases Society. Two Pennsylvania licensed physicians who are knowledgeable concerning treatment of Lyme disease and related tick-borne illness and who are members of the Infectious Diseases Society of America. A Pennsylvania licensed epidemiologist who has expertise in spirochetes and related infectious diseases. Two individuals who represent Lyme disease patient groups and who may be a Lyme disease patient or a family member of a Lyme disease patient. One individual who is a Lyme disease patient or family member of a Lyme disease patient. Two Pennsylvania licensed registered nurses, one of whom is a certified registered nurse practitioner and both of whom are knowledgeable concerning Lyme disease and related tick-borne illness. The Director of Vector Management of the Department of Environmental Protection. An entomologist with the Department of Entomology of the Pennsylvania State University who has experience in tick identification and tick-borne diseases. A Pennsylvania licensed registered school nurse who is knowledgeable concerning Lyme disease and related tick-borne illness. Two Pennsylvania licensed veterinarians, at least one of whom is a veterinary epidemiologist, and both of whom are knowledgeable concerning Lyme disease and related tick-borne illness. A representative from the Northeast DNA Laboratory of East Stroudsburg University who is knowledgeable about vector-borne diseases. Act required the task force to issue a report with recommendations to the Secretary of Health within one year of its first meeting. The report was also to be submitted to the Senate Public Health and Welfare Committee, the House Health Committee and the House Human Services Committee. As such, the task force issued its report in September 2015, with 16 recommendations in three areas: prevention; education and awareness; surveillance; and other recommendations. See Appendix C. Act also gave the Department of Health the following powers and duties: Develop a program of general public and health care professional information and education regarding Lyme disease which shall include the 13

22 broad spectrum of scientific and treatment options regarding all stages of Lyme disease and related tick-borne illnesses. Develop an active tick collection, testing, surveillance and communication program, 3 subject to the availability of funds, in cooperation with the Department of Environmental Protection, to provide a better understanding of, including, but not limited to, the full range of tick-borne diseases, geographic hot spots and levels of infectivity to be used in targeting prevention, information and education efforts. 4 The surveillance data shall be communicated to health care professionals via public health alerts and shall be published on the department s publicly accessible Internet website. Cooperate with the Pennsylvania Game Commission and the Department of Conservation and Natural Resources to disseminate the information to licensees, visitors of state parks and lands, and the general public. Cooperate with the Department of Education to: Disseminate information to school personnel, parents, guardians, and students. Determine what role schools may play in the prevention of Lyme disease, including, but not limited to, integrated pest management strategies and prompt removal and reporting of tick removals to parents, guardians, and State officials. Update policies to recognize signs or symptoms of Lyme disease and related tick-borne illnesses as health conditions potentially requiring accommodations. Cooperate with professional associations of health care professionals to provide an education program for professionals. Cooperate with The Pennsylvania State University, Department of Entomology, cooperative extension program for integrated pest management, to disseminate educational resources about ticks, related diseases, and integrated pest management for disease prevention to health care professionals and the general public. Identify and apply for public and private grants and funding in order to carry out the provisions of this act. Within 45 days of the effective date of this section, make available current data on tick surveillance programs in this Commonwealth conducted by 3 The Department may enter into a contract, memorandum of understanding, or other agreement with another governmental or nongovernmental entity to develop an active tick collection, testing, surveillance, and communication program. 4 This effort may include the exploration of and recommendations regarding the use of veterinary data on tickborne disease prevention, specifically dogs and horses and perhaps other animals, as the Centers for Disease Control and Prevention has recommended. 14

23 other entities, including the Northeast DNA Laboratory of East Stroudsburg University and the Department of Entomology of the Pennsylvania State University, until such time as the Department publishes the results of the active tick collection, testing, surveillance and communication program. The data shall be communicated via public health alerts to health care professionals and made available on the Department s publicly accessible Internet website. 15

24 III. Prevention Recommendations A. Prevention Recommendation 1: Protocol and Funding Strategy for Schools in High-Risk Areas Develop and implement a protocol and funding strategy for schools located in high-risk areas to implement personal protection and property actions (Integrated Tick Management strategies like spraying, various deer management methods, landscape modifications, based on a review of the available evidence on tick reduction approaches) to reduce the risk of tick exposure on school properties and during school activities. While Lyme disease is present in all Pennsylvania counties, there are 36 counties in Pennsylvania where the average number of new Lyme disease cases per 100,000 population ranges from 50 to 100, as shown in Exhibit 4. Exhibit 4 Pennsylvania Counties With Highest Incidence of Lyme Disease (New Cases Per 100,000 Population, ) Adams Armstrong Bedford Bucks Butler Cameron Carbon Centre Chester Clarion Clearfield Clinton Columbia Cumberland Dauphin Elk Forest Fulton Huntingdon Indiana Jefferson Juniata Lebanon Lycoming McKean Mifflin Montour Perry Potter Snyder Sullivan Susquehanna Union Wayne Wyoming York Source: Developed by LB&FC staff with information from the PA Department of Health. School Nurses We asked the Pennsylvania School Nurses Association to survey their membership regarding training, protocols, and personal protection issues in public schools. The Association s Board sent inquiries to its membership, but received no response. According to an Association official, the matter was discussed among Board members, and the consensus was that Lyme disease is not a major issue in school nursing. Generally, nurses become aware of an infected student after the student has been diagnosed with the disease by a physician. 16

25 School nurses are required to follow protocols as outlined in guidelines adopted by their respective school boards. One such set of guidelines we reviewed does address insect bites in general, with the protocol stating: Remove the stinger. Follow individual procedure for the student if there are known allergies. Apply a topical relief agent. Apply ice. Notify a parent. These particular guidelines also specifically address tick-borne diseases, including Lyme disease, and give information about etiology, transmission, incubation, signs, and symptoms, and give instructions regarding tick removal. To both educate and communicate with school nurses, the Department of Health recommends using the PA Prepared Learning Management System (LMS). Paprepared.net is a web-based system for accessing online training programs and sharing information regarding bioterrorism and other public health and emergency response issues, which may also be an option to disseminating information to doctors. The LMS allows nurses to complete online training, earn continuing professional accreditation, track progress, and share information with each other. For example, the Department reported it had a successful Epi-Pen education effort using this system. The cost of program development on the LMS can range from $5,000 to $15,000. Deer Management As deer are a primary host for diseased ticks, we spoke to the PA Game Commission (PGC) regarding steps schools could take to manage their deer populations. A PGC official told us that there are three factors that impact their deer management decisions. These include: health of the deer herd; health of forests, i.e. are forests regenerating or are deer eating all the young trees; and interaction between the deer herd and humans. The third factor includes interactions between deer and agricultural activities, collisions on the road, and concerns about disease. There are no hard numbers available on these kinds of interactions, and the PGC s Board of Commissioners mainly relies on feedback from constituent groups in assessing the impact of such interactions. The PGC regulates the number of tags issued for the harvesting of female deer, which is the primary method of managing deer populations. Therefore, if deer 17

26 populations need to be reduced in one of the PGC s 23 units across the state, more tags are issued to hunters. Deer overpopulation is a particular problem in the southeast, where deer populations need to be reduced, but where there are limited hunting areas. Schools in areas with abundant deer populations could, therefore, contact the PGC and request that additional tags be issued for those areas that may be the source of the deer grazing on school property. The impact of this approach, however, may not be effective if the deer are in areas where hunting is prohibited. Additionally, at least one municipality in Pennsylvania is considering the 4- Poster System, shown below in Exhibit 5, on various properties. Developed by the U.S. Department of Agriculture, the system, pictured below, works by placing a central bin of whole kernel corn on the device to attract deer. To get to the corn, deer will rub themselves against two sets of rollers that paint a small amount of insecticide onto their ears, heads, necks, and shoulders where most ticks are attached. According to a tick reduction expert, two studies in Maryland and Texas have shown a 90 percent reduction in tick populations after installing the devices. The Lyme Disease Association of Southeastern Pennsylvania (LDASPA) reports that as many as 95 percent of female adult ticks bite deer prior to laying eggs and, that if ticks can be killed at this point in their life cycles, 86 to 99 percent of ticks could be killed on the deer over a three- to four-year period. Each 4-Poster device costs about $600. Estimated costs to maintain six devices over a one-year period are about $2,000, or about $350 per device, including the 200 pounds of feed required each month per device. Each device covers about 50 acres and must be located at least 100 yards from any residence, apartment, or playground. The LDASPA notes that the PGC has expressed concern that the devices may violate its regulations regarding the baiting of deer, but the PGC has agreed to allow them in at least some locations during certain periods. Exhibit 5 4-Poster Device Source: suffolktimes.timesreview.com file photo. 18

27 To place one 4-Poster device at 500 schools would cost approximately $475,000 for the first year and $175,000 annually thereafter. Playground Modifications/Pesticides Several modifications can be made to create tick-resistant playgrounds. Ticks thrive in humid, wooded areas and in areas with tall grasses, but do not do well in sunny, dry locations. Schools should therefor ensure that playgrounds are placed away from tall grasses and wooded areas. Other simple tick countermeasures include removal of leaf litter, tall grasses, and brush at edges of lawns and frequent lawn mowing. These would be of little added cost to schools because, presumably, these are all part of a school s normal maintenance procedures. According to the University of Minnesota, most cases of Lyme disease occur in June and July due to bites from infected nymphal ticks, although cases have been reported in Minnesota from February through November. Assuming the same to be true in Pennsylvania, the most tick-bite prone months occur when school is largely out of session, which somewhat reduces the risk of children incurring tick bites on school property. Ticks can also be controlled by pesticides. Pesticides that kill ticks are called acaricides, and they can be very effective in reducing tick populations. According to the Vermont Department of Health, a single application in late May or early June can reduce tick populations by 69 percent to 100 percent. However, according to the University of Minnesota, it is generally not effective to treat large areas of woods, brush, or tall grass with insecticides as they do not always reach into areas where ticks are found. Ticks can also be reintroduced in areas by traveling on various animals. As ticks do not usually live on maintained lawns, it is unnecessary to treat such areas. Tick sprays, however, can also kill beneficial insects such as bees. For these reasons, we do not include the cost of spraying in our estimates, although limited spraying may be feasible in some situations (e.g., a school fair). According to the Massachusetts Department of Public Health, ticks are much less likely to cross mulch or gravel barriers because they are prone to drying out, which implies that playgrounds that use mulch are at lower risk for ticks. In costing out playground mulch, we found that 50 bags (75 cubic feet of mulch or 2000 pounds) can cover 300 square feet at a depth of 3 inches. Pricing from different outlets shows: Costco: 75 cubic feet of mulch is available for $800, Home Depot: 76.9 cubic feet of mulch is available for $800, and Rubbermulch.com: 75 cubic feet of mulch is available for $

28 In calculating costs for mulch for playgrounds, we assumed a 40 by 40 foot playground, yielding a 1,600 square feet, which is enough playground space for 20 children. Given that 75 cubic yards of mulch covers 300 square feet with a depth of three inches and that, according to the U.S. Consumer Product Safety Commission, playgrounds should have a minimum of nine inches of mulch, a 1,600 square feet playground would cost almost $13,000. To mulch one playground at each of Pennsylvania s public elementary schools in the counties at highest risk for Lyme disease would cost about $7 million. We did not include this cost in our estimate, however, as this would appear to be part of the normal cost of maintenance of school property. Personal Protection and Prevention Outdoor school maintenance personnel can obtain a high degree of protection by wearing Permethrin-treated clothing. According to the Connecticut Agricultural Experiment Station, there are several measures that can be taken to prevent tick bites when spending time outdoors in higher risk tick areas. These measures include: Wearing light-colored clothing with long pants tucked into socks to make ticks easier to detect and keep them on the outside of clothes. Do not wear open-toed shoes or sandals. Use DEET repellant or wear clothes treated with Permethrin-based tick repellant, which can substantially increase the level of protection. When hiking, keep to the center of trails to minimize contact with adjacent vegetation. Unattached ticks brought in on clothing can potentially result in a later tick bite. On returning home, remove, wash, and dry the clothing. Carefully inspect the entire body and remove any ticks. This is probably the most important and effective method for preventing infection. According to officials at the Department of General Services (DGS), tickrepellant clothing costs about $70 for a pair of pants and a shirt. The effectiveness of these items of clothing lasts for approximately 70 washes. Specific items of clothing can also be sent out to receive treatment at a significantly lower cost. If clothing were provided for two workers at the 1,035 Pennsylvania public schools in the areas at highest risk for Lyme disease, the cost would be about $290,000 per year (about $280 per school per year). 20

29 Estimated Cost Total costs for this recommendation including training for school nurses, clothing, and poster devices range from $15,000 to $2,639,500. We developed this estimate as shown on Table 5. Table 5 Minimum and Maximum Estimated Costs for Prevention Recommendation 1 Minimum Estimated Cost Item Year 1 Year 2 Year 3 Year 4 Year 5 Total Training $15,000 nominal nominal nominal nominal $15,000 Total $15,000 nominal nominal nominal nominal $15,000 Maximum Estimated Cost Item Year 1 Year 2 Year 3 Year 4 Year 5 Total Training $ 15,000 nominal nominal nominal nominal $ 15,000 Clothing a 289,800 $289,800 $289,800 $289,800 $289,800 1,449,500 4 Poster Devices b 475, , , , ,000 1,175,000 Total $779,800 $464,800 $464,800 $464,800 $464,800 $2,639,500 a Assumes four sets of clothing per year for five years for two workers at each of 1,035 schools located in each of the 36 PA counties with the highest incidence of Lyme disease. b Assumes one 4-Poster device at 500 Pennsylvania schools (many schools may not meet the set-back requirements). Source: Developed by LB&FC staff. 21

30 B. Prevention Recommendation 2: Park Staff Protocols Develop and implement a protocol for federal, state, and local park staff and properties to include communicating risk awareness (tick presence, tips for personal protection), and taking property actions (Integrated Tick Management strategies like spraying, use of deer management methods, landscape modifications, vehicle spraying, protective clothing and other methods based on a review of the available evidence on tick reduction approaches) to reduce risk to the staff and the public. To determine costs for this recommendation, we spoke to the Pennsylvania Department of Conservation and Natural Resources, which has jurisdiction over Pennsylvania s state parks. The Department reports it has been proactive in working on tick awareness and prevention of tick-borne illness because about onequarter of its staff work outdoors in areas where ticks thrive. The Department also has the second highest rate of workers compensation claims of all Commonwealth agencies. Officials told us that they currently have about 250 compensable claims; of these, about 100 are for Lyme disease. They also told us that many more employees have filed claims because of suspicion of possible Lyme disease. These claims, however, were not yet compensable. State Parks The Department Natural Resources (DCNR) purchases tick-repellant clothing for its employees. A complete outfit consisting of a shirt and pants costs about $70. The effectiveness of the repellant lasts for approximately 70 washes. DCNR estimates that it would cost a minimum of $45,000 to purchase one set of clothing for all of the 645 employees that are required to be out in the field. These employees consist of foresters, forest techs, maintenance, rangers, managers, and some other central office staff. DCNR estimated the cost of providing the same 645 employees with one can of tick repellant. There are three kinds of repellant available and the costs are as follows: Off DEET Repellant: $5 per can - $3,375, Sawyer-Premethrin (applied to clothing): $13 per can - $8,875, and Natrapel: $8 per can - $5,400. Vehicle spraying, (that is, spraying inside vehicles to kill any ticks that may have fallen off a person) is another measure DCNR takes to prevent Lyme disease. Employees are not mandated to do so, but if spraying is desired, it should be done every 70 days. DCNR field estimates say that effective sprays cost from $5 to $13 per can, and it takes an average of 5 cans per vehicle to completely spray for ticks, 22

31 which is $40-$65/vehicle depending on the type of spray used. DCNR does not know how many of its vehicles are sprayed. Additionally, DCNR has posted weather-resistant Lyme disease awareness signs at various trail heads and other places where people would be entering parks and forests (see Exhibit 6). These signs are provided free of charge from the Centers for Disease Control. The cost to post these signs is minimal. A DCNR official made the assumption that park and forest district locations would have affixed the signs using two wood screws to existing bulletin boards and would take a semiskilled laborer less than an hour to complete the job. A semi-skilled laborer and maintenance repairman both have a starting wage of $14.23 per hour. Exhibit 6 Lyme Disease Awareness Sign Source: Provided by the CDC. DCNR has also purchased other tick prevention and education materials. From , the Department purchased and distributed 3,800 tick removers at a cost of $10,442. Five-hundred tick identification posters were purchased at a cost of $310. State parks in Pennsylvania range from under one acre to over 21,000 acres. As discussed the Section A, one 4-Poster device is enough to reduce tick populations for 50 acres. To place 12 (some parks may need more, other may need fewer) 4- Poster devices near areas of high human activity at each of Pennsylvania s 121 state parks (1,452 devices total) would cost $1,379,000 for initial installation and maintenance for one year, with annual maintenance costs thereafter of $508,200. National Parks We spoke to an official from the National Park Service who informed us that there are no set tick prevention protocols or educational standards in national parks. Each park is managed individually and takes a different approach to tick 23

32 management. Parks are provided with a tick-borne disease fact sheet and a poster regarding how to prevent tick bites when working outdoors. At minimum, individual parks provide informational links to visitors and employees. For example, clicking this link, planyourvisit/avoid-ticks.htm, will access the tick education page from Gettysburg National Military Park. In Pennsylvania, national parks may use some minimal approaches, which can include posting informational signs at trail heads and visitor centers and a tick bite reporting system. According to a national park official, all parks do, however, practice integrated pest management approaches, which include prevention methods such as mowing, cleaning brush from trails, and blowing leaf litter off of trails. We spoke to officials at Gettysburg National Military Park. In order to provide some education about tick-borne diseases, this park holds tick education training for staff, has information on its park website, and includes tick information in printed park guides that are available at the park, such as an individual Ticks & Lyme Disease Fact Sheet. Additionally, a page in the park s official guide is dedicated to ticks and Lyme disease. The Park relies on information provided by the CDC, which includes four main instructions on preventing Lyme disease, as is displayed on the signage the Center provides (and is posted by many Pennsylvania state-run parks). Those instructions are: use insect repellant, check for ticks daily, shower soon after being outdoors, and call your doctor if you get a fever or rash. The national park at Gettysburg has not yet posted these signs at trailheads, but, according to one official, the signs will be posted after planned improvements to trailheads in the park. While Pennsylvania gives its outdoor parks employees options for repellant, protective clothing, and vehicle spraying, national park employees only have the protection of insect repellant. Protective clothing is not yet an approved expense at the national parks. The National Park Service is also engaged in a long-term study to determine why there have been increases in tick populations and any ecological drivers to explain the increase. Called the Dilution Hypothesis, it postulates that ineffective forest management has contributed to increases in tick populations. The hypothesis states that deer populations increased when predators, such as wolves, were eradicated from their environments. More deer mean that more of 24

33 the understory, or shrubbery and bushes, get eaten. Increased thinning of this greenery, in turn, causes a disturbed (i.e., unnatural) environment where animals, such as foxes and opossums, which also feed on the understory, cannot thrive. Opossum and fox are good species for controlling ticks because they remove them by assiduous grooming and also control the white-footed mice population. Deer and mice are capable of living in disturbed environments, whereas other species are not. As the white-footed mouse population increases, the hypothesis says, the tick population increases. The mouse population is important because they carry the Lyme disease bacteria and the larval-state ticks feed on them because they are low to the ground. The next stage of tick, nymph, is the state of tick that often bites humans and, if carrying the infection, is how the disease is transmitted. The adult tick, finally, feeds on deer. An increased deer population means ticks can successfully lay more eggs, thereby increasing their population. This study is expected to last 10 years or more, as it takes time for forests to regenerate and for absent species to return. The Park Services official stated that healthier forests yield lower incidence of ticks and their associated Lyme disease. Local Parks Pennsylvania has approximately 4,000 local parks that are five acres or more, and therefore likely to have at least some areas where deer ticks could breed. Given these numbers, we were not able to survey the local jurisdictions where these parks are located to inquire as to the steps they may or may not be taking to protect their employees and visitors from tick bites. We did, however, estimate the potential cost to install two Lyme disease awareness signs (estimated labor cost of $10 per sign) and to install and maintain 4-Poster deer devises at the 2,896 local parks with 10 or more acres, and thus likely to meet the set-back requirements that pertain to these devices. To install two 4-Poster devices at the 2,896 local parks greater than 10 acres (some parks may need more, other may need fewer), the cost would be about $3.5 million, with annual maintenance costs of about $2 million. Estimated Cost 1 Since DCNR is already providing insect repellant and tick-repellant clothing for its employees, we did not include additional costs for these items in our estimate. Additionally, since state parks have already installed many of the CDC Lyme disease signs, we did not include that cost for them in this recommendation. We did not estimate costs for protections at national parks because they are outside the Commonwealth s jurisdiction. The estimate we developed for this recommendation is shown in Table 6. 1 We did not attempt to estimate the cost of spraying to kill ticks as there are significant environmental impacts to widespread spraying of insecticides. 25

34 Table 6 Minimum and Maximum Estimated Costs for Prevention Recommendation 2 Minimum Estimated Cost Item Year 1 Year 2 Year 3 Year 4 Year 5 Total CDC Signage Local and State Parks a $85,350 nominal nominal nominal nominal $85,350 Total $85,350 nominal nominal nominal nominal $85,350 Maximum Estimated Cost Item Year 1 Year 2 Year 3 Year 4 Year 5 Total CDC Signage Local Parks $ 85,350 nominal nominal nominal nominal $ 85,350 Clothing Local parks b 1,621,760 $1,621,760 $1,621,760 $1,621,760 $1,621,760 8,108,800 4 Poster Devices State Parks c 1,379, , , , ,200 3,412,200 4 Poster Devices Local Parks d 5,502,400 2,027,200 2,027,200 2,027,200 2,027,200 13,611,200 Total $8,588,910 $4,157,160 $4,157,160 $4,157,160 $4,157,160 $25,217,550 a Assumes four sets of clothing for two workers at all 2,896 local parks over 10 acres. b Assumes 12 4-Poster devices at each of Pennsylvania s 121 state parks. c Assumes an average of two 4-Poster devices at each local park over 10 acres, of which there are 2,896 in Pennsylvania. Source: Developed by LB&FC staff. 26

35 C. Prevention Recommendation 3: Standard Brochure for Physician Distribution Develop and implement a standard brochure (based on the Virginia model) that physicians ideally should provide to patients when they are evaluated, either by clinical exam or lab testing, for potential Lyme and related tick-borne diseases (TBD). Virginia Brochure We obtained the Virginia brochure, shown in Appendix D. It does not, however, include specific information the Task Force recommended for inclusion: A negative result cannot rule out Lyme disease, based on current testing for early Lyme disease. Certain tests for TBDs are based on the body s immune response to the infection that takes time to develop. Science is emerging rapidly in tick-borne diseases. Be aware that there are multiple schools of thought across the medical community regarding diagnosis and treatment of tick-borne diseases. Costs to modify the brochure to include information desired by the Task Force should, however, be minimal. The Virginia brochure does include information on ticks, symptoms, and treatment for both Lyme disease and Rocky Mountain Spotted Fever, as well as on prevention and tick removal. We contacted the Bureau of Publications within the Department of General Services to determine if it could print and/or distribute a Pennsylvania brochure. The Bureau does design and print work and will both and mail its products. The price to print a brochure similar to the VA brochure would be $0.14 per piece, which includes two-sided color, folding, cutting, and boxing for shipment, for a total cost of $140 per 1,000. The Bureau also includes design services at no extra charge. In comparison, 1,000 glossy, tri-fold brochures from two private marketing companies are $262 and $151. An average medical practice in Pennsylvania includes approximately five physicians. We estimated costs to print and mail 100 brochures to each general practitioner to be $154,000 per year, with approximately $134,000 for printing the brochures and $19,400 for postage. 27

36 Distributing Information to General Practitioners According to a 2012 Department of Health report, there were 30,928 physicians providing direct patient care in Pennsylvania. The number of physicians practicing general or family medicine is 7,721, or 25 percent of all practicing physicians. Table 7 below shows those physicians who practiced general or family medicine. Table 7 General or Family Practice Physicians in Pennsylvania Primary Specialty Adolescent Medicine Family Medicine... 4,098 General Practice Internal Medicine... 3,577 General Pediatrics... 1,684 Total General Practice... 9,627 Total Physicians... 30,928 Source: Developed by LB&FC staff with data from the PA Department of Health Report, 2012 Pulse of Pennsylvania s Physicians and Physician Assistant Workforce. Part of the Task Force s intent with this recommendation is for a trainer/educator to visit physicians to provide them with enhanced education regarding Lyme disease. According to a representative of a major pharmaceutical company, it costs the company approximately $150 per office visit by a company representative. Assuming five doctors per practice, this would require about 1,900 office visits at a cost of approximately $285,000 per year. Costs would be substantially higher if an effort was made to visit each doctor personally (rather than one visit to each office). Estimated Cost Costs overall for printing and mailing 100 informational Lyme disease brochures annually to each general practitioner are $772,000 for the five-year period. An educational visit to each general practice office would cost approximately $285,000 per year, or $1,425,000 if visits are made to each office every year for five years. (See Table 8.) 28

37 Table 8 Minimum and Maximum Estimated Costs for Prevention Recommendation 3 Minimum Estimated Cost Item Year 1 Year 2 Year 3 Year 4 Year 5 Total Print and mail 100 brochures to each family practice physician $154,400 $154,400 $154,400 $154,400 $154,400 $772,000 Total $154,400 $154,400 $154,400 $154,400 $154,400 $772,000 Maximum Estimated Cost Item Year 1 Year 2 Year 3 Year 4 Year 5 Total Print and mail 100 brochures to each family practice physician $154,400 $154,400 $154,400 $154,400 $154,400 $ 772,000 Office Visits 285, , , , ,000 1,425,000 Total $439,400 $439,400 $439,400 $439,400 $439,400 $2,197,000 Source: Developed by LB&FC staff. 29

38 D. Prevention Recommendation 4: Strategy for Reducing Transfusion-transmitted Babesiosis (TTB) 1 Develop and implement strategy to reduce risk of transfusion transmitted Babesiosis (TTB) resulting from donors with tick-borne infection. According to the Task Force report, TTB is the leading infectious cause of mortality in transfusion recipients, as reported by the Food and Drug Administration. Even so, blood-borne transmission (e.g., from an infected mother to a baby during pregnancy or delivery, or by blood transfusion from an infected donor) is thought to be uncommon. In 2011, babesiosis, the microscopic parasite that causes Lyme disease, was added to the list of Nationally Notifiable Conditions, which means that state health departments are encouraged to share information about cases of babesiosis with the Centers for Disease Control and Prevention (CDC). The CDC works with state and local health departments to provide reference diagnostic testing for babesiosis and to provide consultation for health professionals to help them care for patients with babesiosis. Routes of Transmission and Incidence of Transmission According to the CDC, in 2013, of the 597 Lyme disease patients for whom data were available, 270 (45 percent) recalled having a tick bite in the eight weeks before the onset of symptoms. Because the ticks that spread Babesia parasites are very small, many infected people do not remember being bitten. Babesiosis is usually spread by ticks, but people can also get infected via blood transfusion or congenitally (from mother to baby during pregnancy or delivery). In 2013, 14 cases of babesiosis in blood recipients were classified by the reporting state as transfusion-associated. Babsiosis in the Blood Supply Both the CDC and the U.S. Food and Drug Administration (FDA) have responsibility for the safety of the blood supply in the United States. The CDC has responsibility for surveillance, detection, and warning of potential public health risks within the blood supply. These public health efforts help make transfusions the highest quality possible. One way CDC plays an important role in keeping the blood supply safe is by assisting state and local health departments and hospitals in investigating reports of potential infectious disease 1 Babesiosis is a rare, severe, and sometimes fatal tick-borne disease caused by various types of Babesia, a microscopic parasite that infects red blood cells. 30

39 transmission. CDC also monitors the safety of the blood supply by collecting reports of adverse reactions and errors or incidents associated with blood transfusions. These activities help CDC identify ways to prevent transmission of infectious diseases through blood transfusions as well as other transfusion-related adverse events. The FDA is responsible for overseeing and regulating the U.S. blood supply by enforcing standards for blood collection and distribution of blood products. The agency also inspects blood collection centers and monitors reports of errors, accidents, and adverse events related to blood collection and transfusion. FDA monitors the safety of blood and blood products by requiring reporting of errors and accidents associated with the manufacturing and distribution of blood and blood products. The agency also monitors deaths associated with blood transfusions. According to the CDC, there is currently no Babesia test approved by the Food and Drug Administration available for screening prospective blood donors, although some manufacturers are working to develop tests for blood donor screening purposes. While there is no test, blood banks screen for this by the questions they ask. For example, a donor is asked the question In the past three years, have you ever had Chagas disease or Babesiosos? The American Red Cross is participating in a clinical study, sponsored by IMUGEN, Inc., to help improve the safety of the blood supply. IMUGEN, Inc. is a clinical laboratory located in Norwood, MA with experience in the development and performance of specialized testing of clinical specimens for tick-borne diseases. This study will test the blood supply for evidence of tick-borne Babesia by methods developed by IMUGEN and will include testing of over 26,000 blood donor specimens. The goal of this study is to reduce the potential for transfusion-transmitted Babesia and thus, increase the safety of the blood supply. Estimated Cost As both the CDC and the FDA have responsibility for the safety and testing of the blood supply there are no state costs associated with this recommendation. 31

40 IV. Education & Awareness 1 A. Education & Awareness Recommendation 1: Public Awareness Campaign Develop and implement comprehensive multimedia public awareness campaign targeting the general public and at-risk population to improve awareness and understanding of TBDs in Pennsylvania, and establish working relationships with partners that represent key stakeholders. The costs associated with undertaking public awareness campaigns in Pennsylvania and other states that we reviewed were limited by the amount of funding available for the campaigns. Because funding was either not available or very limited, certain public awareness campaigns had very little or no added costs to the state agency s operations. Therefore, the cost estimates we present range from zero to upwards of $3 million. Low Cost Campaigns In Maryland, education and surveillance are identified as key components of addressing public health in the context of Lyme disease. The public education component includes Maryland s Get Ticked Off public awareness campaign. 2 The 2008 campaign was done on the cheap, as there were no dedicated funds for it. For example, campaign brochures were produced within the state s Department of Health and Mental Hygiene (DHMH). No separate campaign website was developed, but 1 The Task Force made two recommendations relating to education and awareness of Lyme disease with ideas, such as Staff time to plan and coordinate. Community Events/Activities. Planning, printing, graphic design, web design, advertising on radio, television, and online, including social media. Ad development and ad buy. Poster distribution. Create or enhance partnerships with groups and organizations that have broad reach and those working with at-risk populations (hunting and outdoor shops, Boy Scouts, school nurses, etc.) Develop a memorandum of understanding or other agreements on a program/project basis to establish roles, responsibilities, and contributions. Gather partner feedback on Task Force recommendations, especially education & awareness programs, with a focus on implementation, reach, and sustainability. Poster/video/web competition in schools (voluntary and driven by national/community partners). School nurse survey assessing prevalence and impact of TBDs. Development/distribution/tabulation. Research symposium for HCPs, experts, researchers, and other stakeholders. Data Jam/Hackathon open source data projects with experts, students, and policy-makers. 2 Lyme disease is the most common tick-borne disease in Maryland. The Maryland Department of Health and Mental Hygiene website contains information regarding Lyme disease, including information on how to prevent and treat it, information for healthcare and public health professionals, directions on reporting Lyme disease, and brochures and posters (in both English and Spanish) for the Maryland Get Ticked Off awareness campaign. 32

41 the DHMH website was modified. The campaign worked primarily through the existing structure of local health departments. Unfortunately, with no dedicated funding, no evaluations have been conducted to assess the effectiveness of the campaign. In Pennsylvania last year, the Department of Health undertook a low-cost public awareness campaign designed to encourage flu vaccinations. The 2015 Stopping the Flu Starts with You campaign had a low-cost approach in which no money was spent other than the regular cost of the staff to create the materials. 3 All creative planning and work was produced in-house by DOH s communications office, and the materials were not physically printed but only made available electronically. Paid media tools were not utilized; the campaign was pushed out via earned media press releases, press events which were reported by the media. 4 We also found the CDC makes available Lyme disease brochures and fact sheets, with fact sheets tailored to various at-risk groups. These fact sheets address Lyme disease prevention for outdoor workers, hikers, golfers, pregnant women, and parents. There are also prevention materials, such as a comic strip and crossword puzzle for children, and trail signs for posting. The CDC also makes available on its website three radio public service announcements geared toward the general public and one longer PSA directed to health care professionals. These are free to state and local health departments. The CDC website includes a place for collaboration where public health agencies can access tools and resources designed specifically for local health agency professionals, including the CDC Communication Resource Center (CRC). This resource center offers free CDC-produced communication materials that can be downloaded, customized, shared, and distributed, including fact sheet templates, matte articles, podcasts, videos, rights-free photography, and more. The resource center also provides a resource directory, designed to enable communications about public health issues between CDC staff and state health agencies. Mid-range Cost Campaigns Connecticut. Even though Lyme disease was discovered in Connecticut and Connecticut has one of the highest rates of Lyme disease in the country, 5 state Department of Public Health officials reported that state funding for Lyme disease community intervention and awareness programs has been a challenge. Since 3 Unlike the 2009 H1N1 flu public awareness campaign that was budgeted for over $3 million. 4 During the campaign, DOH held 140 clinics at health centers across the state and DOH officials also made numerous public appearances and reached out to Pennsylvanians statewide via social media to further spread information about preventing the flu. The campaign culminated with clinics at the annual Pennsylvania Farm Show where more than 1,000 people got free flu vaccines. 5 Having 47.8 confirmed cases per 100,000 population in 2014 according to the CDC, which is sixth highest in the nation. 33

42 2010, 11 bills have been introduced in the Connecticut legislature related to various aspects of Lyme disease, including funding awareness campaigns, but none has been enacted. Connecticut s DPH is a strong proponent of Lyme disease community prevention programs, which operate through local health departments. Federal funding through the CDC for these prevention programs was available through The how-to guide for these programs includes educational and promotional material as well as guidance with how to utilize media sources to get the word out and increase awareness about the program. In 2015, Connecticut SB 207 proposed appropriating $450,000 to DPH for grants that would address: (1) developing and implementing a Lyme disease prevention social marketing campaign ($170,000); and (2) allowing the Ridgefield Health Department to develop and implement a regional community prevention and awareness program for Lyme disease (and other TBD) using their BLAST 6 prevention model ($280,000). DPH summarized the $170,000 media campaign as follows: DPH would develop and execute a social marketing campaign with elements that reach statewide and targeted audiences with important information about Lyme disease prevention. An integrated marketing campaign will be created to promote Lyme disease prevention. Strategies may include components such as TV and radio spots, online banner ads, point of purchase ads, social media and public relations strategies. The campaign activities would peak during April-May and August-September coinciding with the times of highest risk for acquiring tick-borne disease infections in Connecticut. Themes of the campaign will include: (1) personal protective measures to avoid tick bites, (2) environmental measures to reduce tick populations around the home, and (3) need for early diagnosis of Lyme disease and other tick-borne illnesses such as anaplasmosis and babesiosis. Further campaign details were unavailable because SB 207 was not enacted. Statewide funding for new initiatives, according to DPH, has been reduced to zero 6 BLAST stands for the five measures that people can take to prevent tick-borne diseases by reducing tick bites. B stands for bathing soon after spending time outdoors, L reminds people to look their bodies over for ticks and to remove them properly, A encourages people to apply repellents appropriately when outdoors, S stands for spraying the perimeter of yards at the most effective time of the year, T reminds people to treat pets. The Ridgefield Health Department developed its BLAST program that proved successful in establishing community, corporate, and public health partnerships that have been sustained locally and positioned to expand statewide. 34

43 due to the state s current budget situation. Funding for FY was to come from the existing DPH budget: Provide funding of $100,000 in FY 16 and $225,000 in FY 17 to support Lyme disease prevention as follows: (1) contract for one full-time statewide education coordinator based in the Ridgefield Health Department who is currently the director of the BLAST Program in both FY 16 and FY 17, and (2) contract for three part-time health education coordinators ($105,000) to implement a regional community prevention program for Lyme disease in locations determined by DPH and provide materials ($20,000) in FY 17. New York. New York State s Lyme disease public awareness campaign covers several forms of media, including inserts in newspapers, online, the Department of Health website, television advertisements, bus shelter postings, and billboards. A state Department of Health official said the recent trend is to focus resources online and at the Department s website because more people use them, and technology allows for obtaining more accurate metrics on usage and allows them to target information to certain people based on usage patterns. Funding for awareness materials and tools comes from several sources: The TBD (Tick-Borne Disease) Institute, similar to NIH, provides approximately $70,000 each year for Lyme disease media and education. The New York State Lyme Disease Task Force provides the New York State Department of Health funding to implement Task Force recommendations or projects as well as grants to earmarked groups (such as universities and hospitals). Funding is also provided for a two-day networking and education meeting among the county health departments and for TBD Researchers (about 40 participants.) $175,000 is dedicated to Internet advertising. Higher Cost Campaigns Department of Health Estimate. Pennsylvania s Department of Health estimated costs associated with the implementation ideas in the Task Force report regarding a public awareness campaign as listed in Table 9. DOH has undertaken both low cost campaigns as well as higher cost campaigns. 35

44 Table 9 PA Department of Health Cost Estimates for Public Awareness Campaign General Categories of Activities DOH Cost Estimates Total Plan/Coordinate 1. DOH lists a general $100,000 that would be required for overall development activities for producing a comprehensive, statewide public awareness campaign. This would include design and implementation of graphic material for promotion, such as posters, web material, TV advertisements, etc. $100,000 Promotional Activities 2. DOH listed most of their estimated costs in this category. These estimates are below: Events/Activities a. $600,000 television promotion b. $375,000 radio promotion c. $325,000 for posters d. $100,000 transit promotion e. $100,000 digital promotion f. $ 75,000 gas topper promotion g. $100,000 cinema promotion h. $110,000 weekly newspaper promotion i. $200,000 door hanger promotion $1,985, DOH did not identify any specific cost estimate for actual Lyme disease awareness events or activities. $0 4. DOH indicated that existing multi-agency coordination through the existing Arboviral Workgroup does not work effectively and is fairly minimal. $0 Total $2,085,000 Coordination among agencies/stakeholders Source: Developed by LB&FC staff from information provided by the Department of Health Pennsylvania s H1N1 Campaign. In 2009, Pennsylvania s DOH undertook a public awareness campaign relating to the H1N1 flu pandemic. The campaign was intended to have four components focusing on prevention, vaccination, outreach to healthcare workers, and outreach to workplaces/employers. The goals were to raise awareness of the virus, educate Pennsylvania residents on how to protect themselves, and encourage immunization. Costs were budgeted in three categories: prevention, vaccination, and outreach for a total of over $3.2 million for the one-year campaign. Prevention involved broad awareness advertising, creation, and utilization of public relations tools, targeted communications, social media and other online presences, as well as maintaining an H1N1 website. As shown on Table 10, the budget was: 36

45 Table 10 Pennsylvania s H1N1 Prevention Campaign Budget Creative Services Firm 1... $149,951 Firm 2... $ 82,852 Media Placement TV... $118,300 Radio ,335 Online... 43,500 Transit... 47,250 Sub-Total Media... $432,385 Total Prevention... $665,188 Source: Developed by LB&FC staff from information provided by the Department of Health. Vaccination sought to educate individuals about the H1N1 vaccine and encourage priority groups to be vaccinated, continue to raise awareness and educate people on protection and prepare for the H1N1 pandemic, and prepare to act quickly if issues arose regarding the vaccine program or the severity of the flu. Similar media and public relations tools were used. As shown on Table 11, the budget was: Table 11 Pennsylvania s H1N1 Vaccination Campaign Budget a Posters, Transit b Gas Toppers Creative Services Firm 1... $527,617 Firm 2... $ 88,610 Media Placement TV... $657,757 Radio ,135 Online... 53,000 Outdoor ,970 a Lifestyle ,000 b Sub-Total Media... $1,567,615 Total Vaccination... $2,183,842 Source: Developed by LB&FC staff from information provided by the Department of Health. Outreach to healthcare workers sought to raise awareness and educate healthcare providers on steps to prepare staff and facilities for the pandemic, and motivate healthcare workers to get both the seasonal and novel H1N1 flu vaccines. This involved establishing an information hub at the H1N1 website for both prevention and preparation education; tools to promote and manage healthcare worker vaccinations; and outreach to hospitals, health facilities, and healthcare professionals. The budget was as shown on Table

46 Table 12 Pennsylvania s H1N1 Outreach Campaign Budget Creative Services Firms 1&2... $270,000 Media Placement... 81,137 Total Outreach... $351,137 Source: Developed by LB&FC staff from information provided by the Department of Health. Private Media Firm Estimate. We asked a private media firm for a general estimate of costs for a Lyme disease public awareness campaign based on the Task Force report. The firm estimated costs in the range of $1 million per year. The firm provided us with a high-level breakdown of how a hypothetical budget of that $1 million estimate would likely be spread out for research, communications, and outreach initiatives for a Lyme disease campaign. These allocation percentages are set forth in Table 13 and the text below. Table 13 Private Media Firm Estimate (over 4 years) Year 1 Year 2 Year 3 Year 4 % $ % $ % $ % $ Research 15% $ 150,000 0% $ 0 15% $ 150,000 0% $ 0 Strategy/Planning 5 50, Concept and ,000 Development , , ,000 Grassroots/Public Relations 5 50, , , ,000 Media Placement , , , ,000 Total 100% $1,000, % $1,000, % $1,000, % $1,000,000 Source: Developed by LB&FC staff from information provided by a private media firm located in Harrisburg. In Year 1, significant research would be undertaken to accurately understand the issue and audiences, giving a baseline to allow for measuring the effectiveness of the campaign and how to modify it over time. Research would be planned for every 3-4 years. Fifteen percent of Year 1 s budget would go to research. Based on that research, 5 percent would be budgeted for planning and strategy development for outreach. Most of the remaining budget would be directed to conceptualizing and developing the media and public relations tools (30 percent) along with placing the traditional and non-traditional media methods (45 percent). Five percent would be used for grassroots and public relations planning. In Year 2, research and strategy development would not be budgeted, but 20 percent of the budget would be put toward fine-tuning the public relations tools 38

47 based on Year 1 experiences. Fifteen percent would go to grassroots outreach. 7 Again, the largest single expenditure would be for media placement, covering 65 percent of the Year 2 budget. In Year 3, 15 percent would be budgeted for updated research to allow for measurement of campaign effectiveness including impact on public behavior as well as the extent of increased awareness. Continued fine tuning of media tools for public relations and grassroots outreach would encompass 5 percent of the budget and 15 percent would go to implementing public relations and grassroots outreach. Sixty-five percent would be for media placement; however, in this third year, the firm would reduce media placement 6-8 weeks prior to the updated research activities to avoid influencing results. Full media placement would resume after the research. In Year 4, 30 percent of expenditures would go to continuing with advertising planning and production and necessary updates to campaign strategy based on the new research results. Twenty percent of the budget would be applied to reviewing grassroots outreach, modifying it if necessary based on the results of the prior year research. The remaining 50 percent of the Year 4 budget would be for media placement. Estimated Cost See Table 14 for the estimated cost. Table 14 Estimated Cost for Comprehensive Education and Awareness Campaign Maximum Estimated Cost Item Year 1 Year 2 Year 3 Year 4 Year 5 Total Prevention Creative 8 $ 232,803 $ 0 $ 0 $ 0 $ 0 $ 232,803 Media 432, , , , ,385 2,161,925 Vaccination Creative 616, ,227 Media 1,567,615 1,567,615 1,567,615 1,567,615 1,567,615 7,838,075 Outreach Creative 270, ,000 Media 81,137 81,137 81,137 81,137 81, ,685 Total $3,200,167 $2,081,137 $2,081,137 $2,081,137 $2,081,137 $11,524,715 Source: Developed by LBFC staff based on cost of DOH H1N1 public awareness campaign. 7 Grassroots organizing is the proactive gathering of support at the local level for the issue resulting in a network of supporters to act on behalf of the issue. 8 We assumed creative services and the cost of producing advertisements would be a one-year cost. 39

48 B. Education & Awareness Recommendation 2: Health Care Provider Prevention (HCP) Education 1 Develop and implement an initial and ongoing education program for healthcare providers to include prevention of tick bites, and prevention of disease progression from acute to later stages of infection. The Task Force seeks HCP education that presents the broad spectrum of views and where they diverge including alternative expert interpretations of the evidence, and recommended options (referencing relevant assumptions, values, and intentions). The implementation ideas developed by the Task Force include the following: 1. Online clearinghouse for healthcare professionals via PA DOH website. 2. Annual/biannual symposium that discusses the latest trends and promising practices (recordings and presentation slides made available on the PA DOH website.) 3. Webinars, presentations, s, and other one-time communications hosted in partnership with HCPs. DOH indicated that an online clearinghouse of Lyme disease-related information for health care professionals already exists via the DOH website. See Exhibit 7. This can be expanded by DOH at no additional cost to the Commonwealth. DOH does not develop education-related symposiums, but we discussed the recommendation with the Pennsylvania Nurses Association (PNA) in Harrisburg. The PNA indicated the cost of undertaking a symposium event for health care professionals varies by the type of program that is intended. The planning would require the PNA to interact with Lyme disease content experts to outline overall learning outcomes and content bullets. The PNA would then design the program, which would involve little additional cost since the PNA would undertake the work as part of regular education development. An online education symposium could be done at little or no cost to the state. PNA could host the program on its continuing education site, which would also help decrease cost. To host a live symposium, there would be costs involved regarding the venue, speakers, potentially refreshments, etc. If location is flexible, PNA said there are several venues to hold an event where costs can be controlled. The PNA estimates 1 Shown as Recommendation 3 in the Lyme Disease Task Force report. 40

49 Exhibit 7 LYME DISEASE AND OTHER TICK-BORNE DISEASES (TBDs) Lyme disease is caused by the bacterium Borrelia burgdorferi and is often transmitted through the bite of an infected blacklegged tick, also known as a deer tick. While Lyme disease is arguably the most commonly occurring and widely-recognized TBD, it is by no means the only one. Different types of ticks can harbor a variety of microorganisms that can be harmful to humans, including Babesia, Anaplasma, Ehrlichia, Powassan Virus, Rocky Mountain Spotted fever, other Borrelia species, and possibly Bartonella to name just a few. Symptoms include fever, fatigue, headache, muscle aches, joint pain, a bull s eye rash may appear, and other symptoms that can be mistaken for viral infections, such as influenza or infectious mononucleosis. Joint pain can be mistaken for other types of arthritis, such as juvenile rheumatoid arthritis (JRA), and neurologic signs of Lyme disease can mimic those caused by other conditions, such as multiple sclerosis (MS) and amyotrophic lateral sclerosis (ALS). When detected early, Lyme disease can be treated with antibiotics. Left untreated, the disease can spread to the joints, heart and nervous system. Early diagnosis is important in preventing late-stage complications. Classic signs of untreated cases can include migratory pain or arthritis, impaired motor and sensory skills and an enlarged heart. The rapid expansion of TBDs in the U.S. and Pennsylvania is further complicated by a lack of consensus among researchers and healthcare practitioners (HCPs) in many critical areas. The medical community varies in its approach to treating patients with Lyme disease, for example, the adherence to a specific timeframe for antibiotic treatment. Others assess patient response to determine treatment. Pennsylvania has led the nation in confirmed cases of Lyme disease for three straight years and for the first time deer ticks have been found in each of Pennsylvania s 67 counties. The 2014 Lyme disease report released in June by the Department of Health showed there were 7,400 cases of Lyme disease in the commonwealth, compared with 5,900 in 2013, a 25 percent increase over the prior year. In an effort to address this issue, Department of Health recently launched Don t Let a Tick Make You Sick, a campaign aimed at raising Lyme-disease awareness. The first line of defense against Lyme is to take precautions in the outdoors by using insect repellent with DEET, wearing long sleeve shirts and long pants, checking for - and promptly and properly removing any ticks, and showering shortly after exposure. If bitten, an individual should monitor the area for the next month. If symptoms develop, consult a physician. QUICK LINKS Lyme Disease Resources: Current Treatment Guidelines Lyme Disease Task Force Report Lyme Disease Fact Sheet Lyme Disease Resources and Information From the CDC Brochure on Lyme Disease Wildlife Disease Reference Library - Lyme Disease Tick Bite Training 10 Things Everyone Should Know About Ticks Press Releases: DEP Study Reveals Lyme Disease Risk In All 67 Counties of Pennsylvania Source: Pennsylvania Department of Health website at: 41

50 costs for a one-day symposium to be about $1,500, and not much more for two days. Cost estimates assume attendees would not be charged. The Centers for Disease Control and Prevention also maintains a webpage addressing Lyme disease at Here the CDC provides articles and information on the following topics pertaining to Lyme disease that are also available to HCPs at no cost: Signs and symptoms of untreated Lyme disease Treatment Diagnosis and testing Data and statistics Preventing tick bites Transmission Tick removal and testing Post-treatment Lyme disease syndrome Health care providers Educational materials Lyme disease Frequently Asked Questions Other links are provided addressing the following topics: Video: Feeling Worse After Treatment? Maybe It s Not Lyme Disease. Tick-borne Diseases of the United States: A Reference Manual for Health Care Providers, Third Edition: Electronic app Lyme disease stories. Video: CDC Public Health Grand Rounds, Lyme Disease: Challenges and Innovations, May 19, Free CME online course. Case Study Course on Lyme disease. Travel information. Lyme Disease Workplace Safety and Health. There are also links to Lyme disease and TBD webinars that are accessible to the general public, such as: Vaccines for Lyme Disease Past, Present, and Future, June 17, Lyme Disease Persistence, Novel and Emerging Tick-borne Diseases Agents, Clinical Features, and Surveillance, Lyme Disease Diagnostics,

51 Many Lyme disease advocacy groups also maintain websites with relevant information. Estimated Cost We estimate that there would be a range of no additional cost to the Commonwealth to approximately $1,500 per event. See Table 15. Table 15 Maximum Estimated Cost for Education and Awareness Recommendation 2 Maximum Estimated Cost Item Year 1 Year 2 Year 3 Year 4 Year 5 Total One-Day Symposium a $1,500 $1,500 $1,500 $1,500 $1,500 $7,500 Total $1,500 $1,500 $1,500 $1,500 $1,500 $7,500 a Assumes one one-day symposium per year. Source: Developed by LB&FC staff. 43

52 V. Surveillance Recommendations A. Surveillance Recommendation 1: Disease List Updating and Reporting (A) Adjust and periodically review the Pennsylvania notifiable disease list. Add Babesiosis and specifically include Powassan virus as an arboviral infection to the state s notifiable disease list and conduct periodic reviews of the list for TBDs. (B) Report TBDs not included on the Pennsylvania notifiable disease list. Encourage providers to report new and emerging TBDs (i.e., borrelia miyamotoi) not included on the list regardless of whether or not they were acquired in the state using the unusual disease occurrence reporting mandate. The Task Force Report looked at the concept of the surveillance system for Lyme disease and other tick-borne infections and concluded that such a system should address both ecological surveillance as well as disease surveillance. Lyme disease is currently on the Pennsylvania Department of Health s list of reportable diseases, although Powassan encephalitis, another serious tick-borne diseases that occurs in the Northeast, is not (see also Appendix E). DOH indicated to us that periodically reviewing and updating the notifiable disease list is an administrative function of the Department of Health and that it carries no specific additional cost. Updating the list is already done and occurs when trends are noticed. Estimated Cost There are no additional costs to the Commonwealth to implement this recommendation. 44

53 B. Surveillance Recommendation 2: Statewide Environmental Survey Increase the public, medical, and scientific community s awareness of tick populations and the diseases they carry through a broad and comprehensive environmental survey. The Task Force report recommended that a broad and comprehensive statewide environmental survey be conducted in order to increase the public, medical, and scientific community s awareness of tick populations and the diseases they carry. Inasmuch as the Task Force found that information is not currently available on the distribution and occurrence of ticks and their diseases in the state, the Task Force believes that undertaking a comprehensive survey will assist stakeholders in taking better informed action. Accomplishing this recommendation would help establish baseline data on tick and disease location and prevalence, increase public awareness, permit better informed medical diagnosis, and encourage reduced exposure. Survey data also allows for better research. The Task Force envisioned such a survey to include the following types of information: Species distribution, density, and phenology. Pathogen prevalence and load. Assessment of the role of animal hosts and reservoirs on tick distribution and pathogen prevalence. Temporal, spatial, and life stage exposure risk. Geographic and seasonal hotspots in the state. The LB&FC received information regarding a preliminary budget for a Penn State University Tick Surveillance Project. This project envisions three scenarios, differing by increasing degrees of intensity for sampling. A more passive sampling approach would be less expensive than those that are more intensive. A more passive surveillance project would involve the university working with veterinarians, deer processors, physicians, and the public to create an outreach platform for possible sampling of ticks in the state. The university would make available, free of charge, a mailer that can be provided to the public in which collected ticks can be mailed back to the university. This would be integrated into a web platform for outreach and data entry and management. A passive survey would cost approximately $2 million over a five-year period. Increasing survey intensity to the level of actively collecting ticks throughout the state would cost upwards of $3.8 million over that same five year period. Activity would involve employment of ten technicians who would systematically and 45

54 repeatedly sample for ticks by dragging and flagging using standardized protocol sites in all 67 counties. Each technician would have a home area (1/10 th of the state) where they will repeatedly and quantitatively sample sites. Ticks would be sent to the university for analysis. A third scenario was presented by the university in which the intensity of surveillance is increased to include both the collection of ticks as well as the collection of infested animals. Ten technicians would sample for ticks as in the second scenario but would also focus on trapping and collecting ticks from small mammals. This would involve additional costs of the project for higher technician salaries as well as the hiring of a full time veterinarian to supervise the animal collection. A five-year cost for this survey scenario is approximately $5.1 million. The Department of Environmental Protection also provided an estimate for an option similar to scenario one (see Minimum Estimate below). DEP estimated the need to survey all 67 counties in Pennsylvania for a minimum of two years to include all life stages for ticks. Testing would be for borrelia burgdorferi, babesia microti, human granulocytic anaplasmosis, bartonella, and rickettsia rickettsii. The Department also assumed they would need to purchase three new trucks and hire five new employees. Estimated Cost See Table 16 for estimated minimum and maximum costs. Table 16 Minimum and Maximum Estimated Costs for Surveillance Recommendation 2 Minimum Estimated Cost a Item Year 1 Year 2 Year 3 Year 4 Year 5 Total Salaries $289,879 $312,488 $327,264 $342,826 $359,128 $1,631,585 Equipment/Supplies 131,000 14,961 14,961 14,961 14, ,844 Total $420,879 $327,449 $342,225 $357,787 $374,089 $1,822,429 Maximum Estimated Cost b Item Year 1 Year 2 Year 3 Year 4 Year 5 Total Salaries $ 621,697 $635,193 $649,094 $ 663,411 $ 678,159 $3,247,554 Equipment/Supplies 449, , , , ,664 1,845,160 Total $1,070,697 $968,913 $992,826 $1,017,454 $1,042,823 $5,092,714 a Minimum is derived from a one-year estimate provided by DEP and then extrapolated by LB&FC staff to provide a five-year estimate. b Maximum estimated costs reflect the third scenario discussed in this section of the report. Source: Developed by LBFC staff. 46

55 C. Surveillance Recommendation 3: Funding for Research and Information Sharing Earmark state budgeted appropriations to conduct research and share information for tick distribution, control, infectivity rates, and pathogen load. In the past, as well as in the Governor s current year budget proposal, there has been no dedicated state funding for Lyme disease research. According to the Lyme Disease Task Force, this absence of funding leads to a lack of data specific to Pennsylvania regarding the host/vector cycle of tick borne diseases. The Task Force attributes under-reporting and under-diagnosis to this lack of information. Expanding on this recommendation, the Task Force advises the Commonwealth to fund a website (see Section IV B of this report), that will provide doctors and the public with relevant and timely information on tick-borne disease specific to Pennsylvania. The information should include the following: Areas of significant disease activity in the Commonwealth. Contact information specifically for health care providers. A resource guide on the distribution and infectivity of ticks by county. The Task Force believes dedicated funding would benefit state, local, and county health departments because it would allow the staff at these agencies to provide more applicable information to physicians. It is anticipated that state agencies would benefit from the information derived from increased research funding by allowing for more informed decision-making. Finally, research institutions would benefit because tick-borne disease studies would receive funding for new and innovative projects. Several ideas for implementing this Task Force recommendation are highlighted in their report. It suggests modifying the vector management infrastructure at the Department of Environmental Protection so that it can be used for tick-borne diseases. DEP s infrastructure includes the capacity for surveys, testing, database management, and a public website that could be expanded from its current purpose. Efficient implementation can be achieved by the lead state agency (the Department of Environmental Protection or the Department of Health) awarding grants and by coordinating funding strategies across agencies. 47

56 Significant resources would be required to implement this recommendation fully. 1 Staff resources to conduct and analyze the research would be needed, and equipment would be needed to process samples collected. To determine costs associated with this recommendation, we contacted the Pennsylvania Department of Environmental Protection and the Pennsylvania Department of Agriculture. We also reviewed the 14 states that make up 96 percent of confirmed Lyme disease cases, according to the most recent CDC data. Those states are Connecticut, Delaware, Maine, Maryland, Massachusetts, Minnesota, New Hampshire, New Jersey, New York, Pennsylvania, Rhode Island, Vermont, Virginia, and Wisconsin. We reviewed these states in an attempt to determine an appropriate level of funding for research. However, we found no other state that dedicates state resources to fund Lyme disease research. 2 We did find, however, that many other states receive Centers for Disease Control (CDC) funding for various Lyme disease projects, while Pennsylvania receives very little such funding. See Tables 17 and 18. Table 17 Total Grants and Confirmed Cases of Lyme Disease ( ) State Grants Cases Connecticut... 3,515,224 9,451 Delaware ,527 2,671 Maine ,367 4,541 Maryland... 1,508,881 4,972 Massachusetts ,447 15,039 Minnesota... 1,366,082 5,716 New Hampshire ,853 4,665 New Jersey ,982 14,824 New York... 1,149,572 2,853 Pennsylvania ,736 23,634 Rhode Island... 1,103,984 1,373 Vermont ,655 2,249 Virginia ,918 4,373 Wisconsin ,940 8,719 Source: Developed by LB&FC staff using data from CDC. 1 Other implementation ideas for components of this recommendation are included in other sections of this report. 2 New York reportedly provided funding of up to $150,000 for Lyme disease research in 2008, but has not funded such research in recent years. 48

57 Table 18 Grant Dollars Per Case State Grant $ Per Case Rhode Island... $ Connecticut Maryland New York Minnesota Delaware Vermont Maine Virginia New Hampshire New Jersey Wisconsin Massachusetts Pennsylvania Source: Developed by LB&FC staff using data from CDC The CDC distributes most of its Lyme disease funds to the states via cooperative agreements that are awarded competitively based on proposals submitted by state health departments and other applicants. To determine an appropriate goal of CDC funding for the Pennsylvania Department of Health to try to obtain, we constructed a range of options using the data from prior year CDC grants to states and the number of new cases in those states. The results are below in Table 19. Table 19 Target Grant Amounts Option #1... $5,202,314 Option #2... 1,097,848 Option # ,614 Option # ,057 Source: Developed by LB&FC staff using data from CDC. For Option 1, we took the most recent number of CDC confirmed Lyme disease cases in Pennsylvania (6,470) and multiplied that number by the highest average per capita grant awarded (Rhode Island, $804). The result is $5.2 million. Given that this number exceeds the maximum annual funding to any state by $4.1 million, this may not be an achievable goal. 49

58 With Option 2, we again used the most recent number of Lyme cases for Pennsylvania and multiplied it by the average per capita award of all the states in our sample. The result of that calculation is roughly $1.1 million. This number is slightly below the highest funding amount, which was New York in 2014 at $1.15 million. Given that the number of confirmed Lyme disease cases in 2014 exceeds those in New York by 3,617, we believe this is a reasonable goal for the Department of Health to pursue. Option 3 is a variation of option 2. Here we used the smallest number of reported cases for Pennsylvania in the last five years (3,298) and multiplied that by the average per capita award of all the states in our sample. The result yielded CDC funding of about $560,000. This result is nearly $300,000 less than the New York average even though Pennsylvania s average number of confirmed Lyme disease cases is nearly 2,000 cases and 1.7 times higher than New York s. Option 4 uses the average number of reported Lyme cases in Pennsylvania (4,727) and multiplies that by the average per capita level of CDC funding for the states in our sample ($169.70). The result is roughly $802,000. Estimated Cost Given Pennsylvania s status as the state with the most number of cases reported annually, Option 4 ($802,000) would appear to be a reasonable target for the Department of Health to pursue for CDC funding. 50

59 D. Surveillance Recommendation 4: Funding for Observational Epidemiological Studies Obtain funding to support observational epidemiologic studies to provide more detailed data on the burden and cost of TBDs among Pennsylvania residents. Observation studies may include: (1) use of prevention practices and risk factors for tick-borne disease; (2) self-reported tick-borne disease illness; and (3) long-term patient outcomes. According to the Task Force, it is necessary to identify risk factors associated with Lyme disease acquisition and understand the natural history of Lyme disease among infected people in order to design effective strategies for Lyme disease control and prevention. While Lyme disease is included in the Pennsylvania National Notifiable Disease Surveillance System (PA-NNDSS), underreporting of Lyme disease is common, and routinely-collected public health surveillance data do not provide sufficient information for Lyme disease research. As such, important gaps exist regarding Lyme disease awareness by the general public, adherence to Lyme disease treatment guidelines, risk factors associated with adverse health outcomes, and the burden and healthcare cost of Lyme disease. To obtain the necessary data, the Task Force recommends conducting observational epidemiologic studies. Unlike experimental studies, where a researcher attempts to change a variable and then measure what happens as a result of the change, observational studies collect observed data. The Task Force maintains that conducting an observational study will allow researchers to gather comprehensive data on risk factors and the consideration of different therapy options. It also believes it will provide detailed evidence on where state resources should be expended to improve the health of Pennsylvania residents. The following ideas to implement the recommendation are suggested by the Task Force: Explore the use of healthcare administrative data/electronic medical record data and, if valid, use it to supplement surveillance case reporting and conduct long-term outcome studies. Collaborate with academic institutions and seek support for study activities from students who have internship or thesis requirements. Incorporate tick borne disease specific questions in the Pennsylvania state supplement for the Behavioral Risk Factor Surveillance System. The suggested lead organizations for this recommendation include Pennsylvania institutions of higher education that have Masters programs in public health 51

60 or similar programs; Pennsylvania academic medical institutions; and the Pennsylvania Department of Health s Bureau of Epidemiology. To help determine the cost of performing an observational study, we worked with the Department of Public Health Sciences at the Penn State University College of Medicine. To address the knowledge gaps mentioned above, we considered the following three-component approach a five-year bi-directional longitudinal study; a cross-sectional population-based survey; and interventions to promote Lyme disease prevention among Pennsylvania residents. Longitudinal Study A 5-year bi-directional longitudinal study would allow researchers to assess the long-term health outcomes among people with Lyme disease. It is envisioned that institutions of higher education with Masters programs in public health or similar programs will work with the Pennsylvania Department of Health (DOH). Researchers would identify people with Lyme disease between 2014 and 2016 from the PA-NNDSS. A sample size of roughly 15,000 individuals would be necessary. Interviewers would collect detailed retrospective information on Lyme disease exposure, risk factors, treatment approaches, and Lyme disease-related complications. They would then follow the patients in the sample through the end of Patients would be contacted on a biannual basis to examine the long-term health outcomes, their costs, and risk factors associated with long-term health outcomes of Lyme disease. The results of the prospective and retrospective data collection would be compared to current Lyme disease practice guidelines. Cross-Sectional Survey The purpose of a cross-sectional population-based survey is to examine knowledge, attitudes, and behaviors related to Lyme disease. Using that information, researchers hope to identify risk factors that lead to exposure to and acquisition of Lyme disease. Entities such as the Penn State Research Center would conduct a population-based random telephone survey and/or an internet-based survey to collect information from a representative sample of Pennsylvania residents roughly 12, Information on Lyme disease awareness, risk factors, prevention measures, post-exposure healthcare-seeking behaviors, history of Lyme disease, treatment approaches, and health outcomes would be collected. 1 Sample size is based on the Pennsylvania Behavioral Risk Factor Surveillance System (BRFSS) data. 52

61 Interventions Various interventions are discussed elsewhere in this report. However, the results of the longitudinal study and the population survey should be used to determine the most effective message in promoting awareness and prevention measures to Pennsylvania residents through various existing outreach programs. Estimated Cost In estimating the costs over five years, PSU assumed a 2.5 percent cost of living increase on salaries and wages. An indirect cost of 20 percent of the direct costs was used to estimate the total costs. 2 Direct costs include a senior epidemiologist, senior survey staff, clinicians, infectious disease researcher, research technicians, biostatistician, data manager, study coordinator, and phone lines. Year 3 costs include a one-time charge of $100,000 for design and printing of brochures. See Table 20. Table 20 Maximum Estimated Cost for Surveillance Recommendation 4 Maximum Estimated Cost Item Year 1 Year 2 Year 3 Year 4 Year 5 Total Salaries $1,382,063 $1,409,863 $1,438,360 $1,467,558 $1,495,061 $7,292,909 Equipment/ Supplies 276, , , , ,014 1,458,580 Brochure , Total $1,658,475 $1,691,834 $1,846,033 $1,761,072 $1,794,075 $8,751,489 Source: Developed by LB&FC staff. 2 Cost estimates assumed a five-year period and applied the current NIH salary cap of $185,100. These numbers are estimated using Penn State s budgeting system, which automatically includes a 2.5 percent cost of living increase on salaries and wages. 53

62 E. Surveillance Recommendation 5: Diagnostic Testing Annual Updates Provide annual updates for, and enhance availability of, a broad array of diagnostic tests for tick-borne disease, as well as encourage the development of innovative and more accurate diagnostic tests. The Task Force recommends identifying tests with proven performance, reliability, and appropriate clinical indications. Annual updates of tick-borne disease diagnostics will help increase the quality and completeness of the surveillance data by using the best available testing. In order to accomplish the goal of additional testing methods, the Task Force recommends that state government, specifically the Department of Health, advocate for the development of innovative, accurate diagnostic tests, the purpose of which is to better identify incidence of Lyme disease, but also identify new and emerging tick-borne diseases. The Task Force would like biotech companies and for-profit laboratories to take a public health approach and make their technologies available to the public. They also recommended that state government encourage the screening of the blood supply. The Task Force suggests the following ideas to implement the recommendation: Encourage participation in tick-borne disease diagnostic development by universities and academic medical institutions in the Commonwealth. The PA DOH Bureau of Laboratories, in collaboration with CDC, currently has services available to support the early diagnosis of non- Lyme tick-borne diseases (Babesiosis, Powassan, and tick-borne rickettsial infections), and health care providers throughout the state should be made aware of these services (PCR testing, microscopic smear examination-babesiosis, IgM testing-powassan). Make healthcare providers aware of Bureau of Lab Services In assessing costs for this recommendation, we worked with the Pennsylvania Department of Health Bureau of Laboratories. The Bureau already performs the testing recommended by the Lyme disease Task Force, and began said testing for Lyme disease in The Bureau of Laboratories currently receives only requests per year. 54

63 Budget cuts over the past several years have been a challenge. There were as many as 80 individuals working for the Bureau, but there are currently only about 40 employees. To proceed beyond what they currently do, and to handle the influx of testing requests implicit in the Task Force s recommendation, the bureau will need additional lab technicians and researchers. The Bureau is also a surveillance laboratory and does not have the expertise or capacity to conduct original research in the near future. While that would certainly be possible with additional funding, it appears that this part of the recommendation s goal would be more appropriately accomplished through grant funding discussed earlier in this report. Proper testing for Lyme disease must be conducted, under current Department of Laboratories guidelines, by a Microbiologist 2, the cost for which is approximately $90,000 per year. 1 The Bureau also estimates they will need about 96 welled plates at approximately $425 per plate, which is sufficient to test 60 specimens. Two tests are generally conducted. The first is an IgM test used for a new exposure. The other is an IgG test for someone who has been exposed for a longer period of time. The total cost for conducting these tests is roughly $15 - $25 per test. This includes the portion of a microbiologist s salary necessary to conduct the test as well as relevant equipment. There is no way to know the effect that a public awareness campaign will have on the number of tests the Bureau of Laboratories is asked to perform. Even if there is complete saturation of the Lyme disease message, it cannot be known if doctors will refer specimens to the state lab or a private lab. New tests for Lyme disease are being researched and developed at multiple locations in the U.S. and elsewhere, including Johns Hopkins University School of Medicine, Abbott s Ibis Biosciences (California), Center for Applied Proteomics and Molecular Medicine (George Mason University), the TGen Research Institute (Arizona), and the Medical University of Vienna. As such, we did not attempt to cost out ways Pennsylvania could encourage the development of innovative and more accurate diagnostic tests. Estimated Cost We assumed the number of Lyme tests performed by the state lab increased tenfold. See Table This figure includes salary and benefits. 55

64 Table 21 Minimum and Maximum Estimated Costs for Surveillance Recommendation 5 Minimum Estimated Cost Item Year 1 Year 2 Year 3 Year 4 Year 5 Total Lyme Tests $3,000 $3,000 $3,000 $3,000 $3,000 $15,000 Total $3,000 $3,000 $3,000 $3,000 $3,000 $15,000 Maximum Estimated Cost Item Year 1 Year 2 Year 3 Year 4 Year 5 Total Lyme Tests $7,500 $7,500 $7,500 $7,500 $7,500 $37,500 Total $7,500 $7,500 $7,500 $7,500 $7,500 $37,500 Source: Developed by LB&FC staff. 56

65 F. Surveillance Recommendation 6: Expand Surveillance Network Improve healthcare provider and veterinarian participation in tick-borne disease surveillance by disseminating annual advisories on the recognition, diagnosis and reporting of tick-borne diseases in Pennsylvania and by utilizing technology to streamline and enable electronic tick-borne disease case reporting. According to the Task Force, improving compliance with the disease reporting regulations, particularly as they pertain to Lyme disease, will help improve the quality and timeliness of surveillance data. According to the Centers for Disease Control and Prevention, approximately 30,000 cases of Lyme disease are reported each year by state health departments. However, based on Lyme disease testing by commercial laboratories and health insurance claims data, the CDC estimates the number to be closer to 300,000 annually. In order to address this underreporting, the Task Force recommends regular reminders to health care providers about the detection, identification, and reporting of suspected tick-borne infections. Implementation ideas suggested by the Task Force are as follows: Utilize electronic medical record systems for automated tick-borne disease case reporting. Establish a school-based surveillance network for tick-borne diseases. To determine the costs associated with this recommendation, we worked with the Pennsylvania Department of Health, information technology professionals with expertise in electronic medical records, and researchers on physician practices in Pennsylvania. According to the Department of Health Bureau of Health Planning, there are 10,738 practicing primary care 1 physicians in Pennsylvania. 2 The cost for producing a custom interface for automated tick-borne disease case reporting within an already existing electronic medical records system could be, depending on practice size, anywhere from $5,000 to $25,000. Given that the average size of a physician s practice is 4-5 doctors, we calculated an estimated cost as shown in Exhibit 8. 1 Family practice, internal medicine, pediatrics Pulse of Pennsylvania s Physician and Physician Assistant Workforce, A Report on the 2012 Surveys of Physicians and Physician Assistants, Volume 5, June

66 Exhibit 8 Estimated Cost for Automated Lyme Disease Interface for PA Family Practices Number of Primary Care Physicians in PA... 10,738 Average Practice Size Number of Practices... 2,386 Average Cost to Produce a Custom Interface... $15,000 Total... $35,790,000 Source: Developed by LB&FC staff using data obtained from the Pennsylvania Department of Health and information technology consultants. It should be noted that the cost for implementing a custom interface for a physician practice that does not currently use electronic medical records would be substantially higher approximately $164,000 for a single primary care physician and about $234,000 for a practice with five primary care physicians. However, our estimate is only the additional cost for the interface portion. Sending annual advisories can be accomplished through an blast from the Department of Health system. The costs associated with this portion of the recommendation are minimal and could reasonably fit within the current appropriation for the Department. The same holds true for establishing a school-based surveillance network for tick-borne diseases. The Pennsylvania National Electronic Disease Surveillance System (PANEDSS) is already in place. Further, the Department of Education currently has the capacity to send advisories to school nurses and other entities regulated by the Department. Again, the costs associated with sending a blast are minimal and could reasonably fit within the current appropriation. Estimated Cost If the Commonwealth were to mandate automated electronic reporting of Lyme disease cases and also pay for implementation, the cost to the state would be up to $60 million depending on the actual size of physician practices. It is likely these cost would be significantly lower, on a per disease basis, if other diseases on the PANEDSS list were include in an expanded automated electronic reporting system. See Table

67 Table 22 Minimum and Maximum Estimated Costs for Surveillance Recommendation 6 Minimum Estimated Cost a Item Year 1 Year 2 Year 3 Year 4 Year 5 Total Electronic Reporting $2,386,000 $2,386,000 $2,386,000 $2,386,000 $2,386,000 $11,930,000 Total $2,386,000 $2,386,000 $2,386,000 $2,386,000 $2,386,000 $11,930,000 Maximum Estimated Cost b Item Year 1 Year 2 Year 3 Year 4 Year 5 Total c Electronic Reporting $11,930,000 $11,930,000 $11,930,000 $11,930,000 $11,930,000 $59,650,000 Total $11,930,000 $11,930,000 $11,930,000 $11,930,000 $11,930,000 $59,650,000 a To arrive at the minimum estimated cost we multiplied the low estimate for producing a custom interface by the number of physician practices. b To arrive at the maximum estimated cost we multiplied the high estimate for producing a custom interface by the number of physician practices. c It is likely that other diseases on the PANEDSS list could benefit from an expanded automated electronic reporting system. As such, the cost would be lower if looked at on a per-disease basis. Source: Developed by LB&FC staff. 59

68 G. Surveillance Recommendation 7: Expand and Standardize Data Collection in Case Investigations Enhance and ensure tick-borne disease surveillance case investigations used by local health department and health district staff to include questions that can identify potential co-infections with other tick-borne pathogens, and help identify potential risk factors for infection. The purpose of this recommendation is to improve the usability of the data collected during surveillance of tick-borne diseases. The Task Force believes that consistent and high quality data regarding the location where individuals acquire Lyme disease, co-infections, and risk factors such as transfusions, transplants, occupation, school, and type of outdoor activity will aid prevention and control efforts. The Task Force suggests implementing this recommendation by encouraging providers to enter available clinical data elements for their patients when reporting the case electronically through the Pennsylvania National Electronic Disease Surveillance System. Implementation of this recommendation appears to be relatively straight-forward. Already, clinicians can make the required infectious disease reports through the Pennsylvania National Electronic Disease Surveillance System. Because of this existing infrastructure, questions regarding these additional clinical data elements can be easily incorporated. Estimated Cost The nature of implementing this recommendation is purely administrative. As such, costs associated with it are minimal and could reasonably be handled through current appropriations to the Department of Health. 60

69 H. Surveillance Recommendation 8: Surveillance Data Website Use a centralized, publically-accessible website to disseminate summaries of human, other animal, and ecologic tick-borne disease surveillance data at a statewide and county level. The purpose of this recommendation is to provide comprehensive information regarding the incidence of tick-borne disease. The infrastructure already exists for implementing the recommendation through the Pennsylvania Department of Health website. Links on all health advisories, prevention materials, and other PA DOH and Department of Environmental Protection documents can serve as a method to advertise the existence of the website. To accomplish the goal of the recommendation, multiple agencies will need to coordinate through Pennsylvania s Arboviral Workgroup, located within the Department of Health Division of Epidemiology. To determine the cost of creating and maintaining the website for this recommendation, we contacted the Department of Environmental Protection Bureau of Fiscal Management. DEP has a webpage devoted to West Nile Virus and disseminates information similar to that required by the recommendation. We also used information provided by the Pennsylvania State University Center for Infectious Disease Dynamics. Estimated Cost We estimate the cost for creating and maintaining a web platform for outreach and data entry and management to be between $40,000 and $45,000 per year. See Table 23. Table 23 Minimum and Maximum Estimated Costs for Surveillance Recommendation 8 Minimum Estimated Cost Item Year 1 Year 2 Year 3 Year 4 Year 5 Total Web Platform $40,000 $40,000 $40,000 $40,000 $40,000 $200,000 Total $40,000 $40,000 $40,000 $40,000 $40,000 $200,000 Maximum Estimated Cost Item Year 1 Year 2 Year 3 Year 4 Year 5 Total Web Platform $45,000 $45,000 $45,000 $45,000 $45,000 $225,000 Total $45,000 $45,000 $45,000 $45,000 $45,000 $225,000 Source: Developed by LB&FC staff. 61

70 62

71 VI. Appendices 63

72 APPENDIX A LYME AND RELATED TICK-BORNE DISEASE SURVEILLANCE, EDUCATION, PREVENTION AND TREATMENT ACT - ENACTMENT Act of Jun. 29, 2014, P.L. 808, No. 83 Cl. 35 An Act Establishing a task force on Lyme disease and related maladies; and providing for powers and duties of the task force, the Department of Health, the Department of Conservation and Natural Resources and the Pennsylvania Game Commission to execute surveillance, prevention and education strategies. The General Assembly of the Commonwealth of Pennsylvania hereby enacts as follows: Section 1. Short title. This act shall be known and may be cited as the Lyme and Related Tick-Borne Disease Surveillance, Education, Prevention and Treatment Act. Section 2. Findings. The General Assembly finds that: (1) Lyme disease and other tick-borne diseases are carried primarily by ticks and pose a serious threat to the health and quality of life of many citizens of this Commonwealth. (2) The most common way to acquire Lyme disease is to be bitten by a tick that carries the spirochete. (3) In 2009 and 2011, this Commonwealth ranked highest in the country in the number of confirmed cases of Lyme disease. From 2002 through 2011, this Commonwealth has reported a total of 42,032 confirmed cases of Lyme Disease. (4) The World Health Organization (WHO) states that Lyme disease will increasingly become a public health threat in the United States. (5) In August 2013, the Centers for Disease Control and Prevention (CDC) released a report that preliminary estimates indicate approximately 300,000 Americans are diagnosed with Lyme disease each year. This is approximately 10 times higher than the number of cases previously reported to the CDC every year. (6) Lyme disease is most prevalent in Southeastern Pennsylvania, but it is found and is increasing across this Commonwealth. (7) With proper precautions taken while engaged in outdoor activities, people can greatly reduce their chances of tick pathogen transmission by making sure that frequent tick checks are made and ticks are removed and disposed of promptly and properly. (8) The early clinical diagnosis and appropriate treatment of these tick-borne disorders and diseases can greatly reduce the risks of continued symptoms which can affect every system and organ of the human body and often every aspect of life. (9) Left untreated, Lyme disease can cause a number of signs and symptoms which can become quite severe. Section 3. Legislative intent. It is the intent of the General Assembly: (1) To provide the public with information and education to create greater public awareness of the dangers of and measures available to prevent, diagnose and treat Lyme disease and related maladies. (2) To ensure that: (i) Health care professionals, insurers, patients and governmental agencies are educated about the broad spectrum of scientific and treatment options regarding all stages of Lyme disease and related tick-borne illnesses. (ii) Health care professionals provide patients with information about the broad spectrum of scientific and treatment options regarding all stages of Lyme disease and related tick-borne illnesses to enable patients to make an informed choice as part of informed consent and to respect the autonomy of that choice. 64

73 Appendix A (Continued) (iii) Government agencies in this Commonwealth provide information regarding the broad spectrum of scientific and treatment options regarding all stages of Lyme disease and related tick-borne illnesses. (iv) A system is established for tick surveillance. Section 4. Definitions. The following words and phrases when used in this act shall have the meanings given to them in this section unless the context clearly indicates otherwise: "Department." The Department of Health of the Commonwealth. "Health care professional." A licensed physician, a physician's assistant, a certified registered nurse practitioner or other licensed health care professional. "Lyme disease." The clinical diagnosis of a patient by a licensed physician, physician's assistant or certified registered nurse practitioner of the presence of signs or symptoms compatible with acute, latestage, persistent infection with Borrelia burgdorferi or complications related to such infection or with such other strains of Borrelia that are recognized by the Centers for Disease Control and Prevention as a cause of Lyme disease. The term includes infection that meets the surveillance criteria established by the Centers for Disease Control and Prevention and other acute and persistent manifestations of such an infection as determined by a physician. "Related tick-borne illness." A case of Bartonella, babesiosis/piroplasmosis, anaplasmosis, ehrlichiosis or other tick-transmissible illness. The term does not include Lyme disease. "Secretary." The Secretary of Health of the Commonwealth. "State officials." The term includes the Secretary of Environmental Protection of the Commonwealth. "Task force." The task force established by this act. Section 5. Task force. (a) Establishment.--The department shall establish a task force on Lyme disease and related tickborne diseases. (b) Purpose.--The task force shall investigate and make recommendations to the department regarding: (1) The surveillance and prevention of Lyme disease and related tick-borne illnesses in this Commonwealth. (2) Raising awareness about the long-term effects of the misdiagnosis of Lyme disease. (3) Development of a program of general public and health care professional information and education regarding Lyme disease which shall include the broad spectrum of scientific and treatment options regarding all stages of Lyme disease and related tick-borne illnesses. (4) Cooperation with the Pennsylvania Game Commission to disseminate the information required under paragraph (3) to licensees of the commission and the general public. (5) Cooperation with the Department of Conservation and Natural Resources to disseminate the information required under paragraph (3) to the general public and visitors of State parks and lands. (6) Cooperation with the Department of Education to: (i) Disseminate the information required under paragraph (3) to school administrators, faculty and staff, parents, guardians and students. (ii) Determine what role schools may play in the prevention of Lyme disease, including, but not limited to, integrated pest management strategies, prompt removal and reporting of tick removals to parents, guardians and State officials. (iii) Update policies to recognize signs or symptoms of Lyme disease and related tickborne illnesses as health conditions potentially requiring accommodations. (7) An active tick collection, testing, surveillance and communication program as provided under subsection (f)(2). (c) Composition.--The task force shall be composed of the following individuals: (1) The secretary or a designee. (2) The Secretary of the Commonwealth or a designee. (3) The Secretary of Education or a designee. (4) The Deputy Secretary for Parks and Forestry in the Department of Conservation and Natural Resources or a designee. (5) The Director of the Bureau of Information and Education of the Pennsylvania Game Commission or a designee. 65

74 Appendix A (Continued) (6) Two physicians licensed in this Commonwealth who are knowledgeable concerning treatment of Lyme disease and related tick-borne illness and who are members of the International Lyme and Associated Diseases Society. (7) Two physicians licensed in this Commonwealth who are knowledgeable concerning treatment of Lyme disease and related tick-borne illness and who are members of the Infectious Diseases Society of America. (8) An epidemiologist licensed in this Commonwealth who has expertise in spirochetes and related infectious diseases. (9) Two individuals who represent Lyme disease patient groups and who may be a Lyme disease patient or a family member of a Lyme disease patient. (10) One individual who is a Lyme disease patient or family member of a Lyme disease patient. (11) Two registered nurses licensed in this Commonwealth, one of whom is a certified registered nurse practitioner and both of whom are knowledgeable concerning Lyme disease and related tick-borne illness. (12) The Director of Vector Management of the Department of Environmental Protection. (13) An entomologist with the Department of Entomology of The Pennsylvania State University who has experience in tick identification and tick-borne diseases. (14) A registered school nurse licensed in this Commonwealth who is knowledgeable concerning Lyme disease and related tick-borne illness. (15) Two veterinarians licensed in this Commonwealth, at least one of whom is a veterinary epidemiologist and both of whom are knowledgeable concerning Lyme disease and related tick-borne illness. (16) A representative from the Northeast DNA Laboratory of East Stroudsburg University who is knowledgeable about vector-borne diseases. (d) Meetings.-- (1) Within 45 days of the effective date of this section, the secretary shall appoint the members of the task force. The secretary shall appoint a chairman of the task force. (2) The task force shall convene within 90 days of the effective date of this section and shall meet at least quarterly. The task force may convene meetings via teleconference. (3) The task force shall issue a report with recommendations to the secretary within one year of its first meeting. The report shall also be transmitted to the Public Health and Welfare Committee of the Senate, the Health Committee of the House of Representatives and the Human Services Committee of the House of Representatives. (4) Nothing in this act shall be construed to prohibit the task force from making interim reports or taking interim actions. (e) Compensation and expenses.--the members of the task force shall receive no compensation for their services but shall be allowed their actual and necessary expenses incurred in performance of their duties. Reimbursement shall be provided by the department. (f) Duties of department.--the department shall: (1) Develop a program of general public and health care professional information and education regarding Lyme disease which shall include the broad spectrum of scientific and treatment options regarding all stages of Lyme disease and related tick-borne illnesses. (2) Develop an active tick collection, testing, surveillance and communication program, subject to the availability of funds, in cooperation with the Department of Environmental Protection, to provide a better understanding of, including, but not limited to, the full range of tick-borne diseases, geographic hot spots and levels of infectivity to be used in targeting prevention, information and education efforts. This effort may include the exploration of and recommendations regarding the use of veterinary data on tick-borne disease prevention, specifically dogs and horses and perhaps other animals, as the Centers for Disease Control and Prevention has recommended. The surveillance data shall be communicated to health care professionals via public health alerts and shall be published on the department's publicly accessible Internet website. The department may enter into a contract, memorandum of understanding or other agreement with another governmental or nongovernmental entity to develop an active tick collection, testing, surveillance and communication program. 66

75 Appendix A (Continued) (3) Cooperate with the Pennsylvania Game Commission to disseminate the information required under paragraph (1) to licensees of the Pennsylvania Game Commission and the general public. (4) Cooperate with the Department of Conservation and Natural Resources to disseminate the information required under paragraph (1) to the general public and visitors of State parks and lands. (5) Cooperate with the Department of Education to: (i) Disseminate the information required under paragraph (1) to school administrators, school nurses, faculty and staff, parents, guardians and students. (ii) Determine what role schools may play in the prevention of Lyme disease, including, but not limited to, integrated pest management strategies and prompt removal and reporting of tick removals to parents, guardians and State officials. (iii) Update policies to recognize signs or symptoms of Lyme disease and related tickborne illnesses as health conditions potentially requiring accommodations. (6) Cooperate with professional associations of health care professionals to provide the education program for professionals required under paragraph (1). (7) Cooperate with The Pennsylvania State University, Department of Entomology, cooperative extension program for integrated pest management, to disseminate educational resources about ticks, related diseases and integrated pest management for disease prevention as required under paragraph (1) to health care professionals and the general public. (8) Identify and apply for public and private grants and funding in order to carry out the provisions of this act. (9) Within 45 days of the effective date of this section, make available current data on tick surveillance programs in this Commonwealth conducted by other entities, including the Northeast DNA Laboratory of East Stroudsburg University and the Department of Entomology of The Pennsylvania State University, until such time as the department publishes the results of the active tick collection, testing, surveillance and communication program as provided for in paragraph (2). The data shall be communicated via public health alerts to health care professionals and made available on the department's publicly accessible Internet website. Section 6. Effective date. This act shall take effect immediately. 67

76 APPENDIX B Lyme Disease Cases by State State Confirmed Probable Incidence* Alabama Alaska Arizona Arkansas California Colorado Connecticut 1,810 1,788 3,058 2,738 2,751 1,964 2,004 1,653 2,111 1, Delaware DC N N Florida Georgia Hawaii Idaho Illinois Indiana Iowa Kansas Kentucky Louisiana Maine ,127 1, Maryland 1,235 1,248 2,576 1,746 1,466 1, , Massachusetts 2,336 1,432 2,988 3,960 4,019 2,380 1,801 3,396 3,816 3,646 1, Michigan Minnesota ,238 1,046 1,063 1,293 1, , Mississippi Missouri Montana Nebraska Nevada New Hampshire , ,002 1, New Jersey 3,363 2,432 3,134 3,214 4,598 3,320 3,398 2,732 2,785 2, New Mexico New York 5,565 4,460 4,165 5,741 4,134 2,385 3,118 2,044 3,512 2, North Carolina North Dakota Ohio Oklahoma Oregon Pennsylvania 4,287 3,242 3,994 3,818 4,950 3,298 4,739 4,146 4,981 6,470 1, Rhode Island South Carolina South Dakota Tennessee Texas Utah Vermont Virginia Washington West Virginia Wisconsin 1,459 1,466 1,814 1,493 1,952 2,505 2,408 1,368 1, Wyoming U.S. Total 23,305 19,931 27,444 28,921 29,959 22,561 24,364 22,014 27,203 25,359 8, Source: Developed by LB&FC staff with information from the CDC. 68

77 APPENDIX C Task Force Recommendations Prevention 1. Develop and implement a protocol and funding strategy for schools located in high-risk areas to implement personal protection and property actions (Integrated Tick Management strategies like spraying, various deer management methods, landscape modifications, based on a review of the available evidence on tick reduction approaches) to reduce the risk of tick exposure on school properties and during school activities. 2. Develop and implement a protocol for federal, state and local park staff and properties to include communicating risk awareness (tick presence, tips for personal protection), and taking property actions (Integrated Tick Management strategies like spraying, use of deer management methods, landscape modifications, vehicle spraying, protective clothing and other methods based on a review of the available evidence on tick reduction approaches) to reduce risk to the staff and the public. 3. Develop and implement a standard brochure (based on the Virginia model) that physicians ideally should provide to patients when they are evaluated, either by clinical exam or lab testing, for potential Lyme and related tick-borne infections. 4. Develop and implement strategy to reduce risk of transfusion transmitted Babesiosis (TTB) resulting from donors with tick-borne infection. Education and Awareness Surveillance 1. Develop and implement comprehensive multimedia public awareness campaign targeting the general public and at-risk population to improve awareness and understanding of TBDs in Pennsylvania, and establish working relationships with partners that represent key stakeholders. 2. Develop and implement an initial and ongoing education program for healthcare providers to include prevention of tick bites, and prevention of disease progression from acute to later stages of infection. 1. (A): Adjust and periodically review the Pennsylvania notifiable disease list. Add Babesiosis and specifically include Powassan virus as an arboviral infection to the state s notifiable disease list and conduct periodic reviews of the list for TBDs. (B): Report TBDs not included on the Pennsylvania notifiable disease list. Encourage providers to report new and emerging TBDs (i.e., B. miyamotoi) not included on the list regardless of whether or not they were acquired in the state using the unusual disease occurrence reporting mandate. 69

78 Appendix C (Continued) 2. Increase the public, medical, and scientific community s awareness of tick populations, and the diseases they carry through a broad and comprehensive statewide environmental survey. 3. Earmark state budgeted appropriations to conduct research and share information for tick distribution, control, infectivity rates, and pathogen load. 4. Obtain funding to support observational epidemiologic studies to provide more detailed data on the burden and cost of TBDs among Pennsylvania residents. Observation studies may include: (1) use of prevention practices and risk factors for tick-borne disease; (2) self-reported tick-borne disease illness; and (3) longterm patient outcomes. 5. Provide annual updates for, and enhance availability of, a broad array of diagnostic tests for tick-borne disease, as well as encourage the development of innovative and more accurate diagnostic tests. 6. Improve healthcare provider and veterinarian participation in tick-borne disease surveillance by disseminating annual advisories on the recognition, diagnosis and reporting of TBDs in PA and by utilizing technology to streamline and enable electronic tick-borne disease case reporting. 7. Enhance and ensure tick-borne disease surveillance case investigations used by local health department and health district staff to include questions that can identify potential co-infections with other tick-borne pathogens, and help identify potential risk factors for infection. 8. Use a centralized, publically-accessible website to disseminate summaries of human, other animal, and ecologic tick-borne disease surveillance data at a statewide and county level. Other Recommendations 1. Convene a task force that reports to the Secretary of Health and operates as an independent advisory group on Lyme disease and other TBDs. 2. Obtain Independent Implementation Cost Analysis Source: Developed by LB&FC staff from LYME DISEASE IN PENNSYLVANIA: A Report Issued by the Task Force on Lyme Disease and Related Tick-Borne Diseases, Pursuant to Act 83 of 2014, September

79 APPENDIX D Spring and summer bring warm temperatures, just right for walking in the woods and other outdoor activities. Warm weather also means that ticks become more active and this can increase the risk of a tick-borne disease. The tick-borne diseases that occur most often in Virginia are Lyme disease, Rocky Mountain spotted fever, and ehrlichiosis. Lyme Disease Lyme disease is caused by infection with a bacterium called Borrelia burgdorferi. The number of Lyme disease cases reported in Virginia has increased substantially in recent years. The Tick The blacklegged tick (Ixodes scapularis), formerly known as the deer tick, is the only carrier of Lyme disease in the Eastern U.S. The blacklegged tick's name comes from it being the only tick in the Eastern U.S. that bites humans and has legs that are black (or dark chocolate brown) in color. Lyme disease transmission to humans usually occurs during the late spring and early summer when young (nymph stage) ticks are active and feeding. Tick nymphs normally feed on small and medium sized animals, but will also feed on people. These ticks typically become infected with the Lyme disease agent by feeding as larvae on certain rodent species. In the fall, the nymphs become adults and infected nymphs become infected adults. Adult blacklegged ticks prefer to feed on deer. However, adult ticks will occasionally bite people on warm days of the fall and winter and can transmit Lyme disease at that time. Transmission of Lyme disease by the nymph or adult ticks does not occur until the tick has been attached and feeding on a human or animal host for at least 36 hours. The Symptoms Between three days to several weeks after being bitten by an infected tick, 70-90% of people develop a circular or oval rash, called erythema migrans (or EM), at the site of the bite. To qualify as an EM, the rash must be at least two inches in diameter. That is because bites by some tick species can cause local inflammation and redness around the bite that could be mistaken for an EM. Unlike localized inflammation, an EM rash will increase in size and may become more than 12 inches across. As it enlarges, the area around the center of the rash clears, giving it a bull's eye appearance. The EM rash does not itch or hurt so if it is not seen, it may not be noticed. In addition to an EM rash, Lyme disease may cause headache, fever, muscle and joint aches, and a feeling of tiredness. If left untreated, Lyme disease may progress to affect the joints, nervous system, or heart several weeks to months after the tick bite. In a small percentage of infected people, late symptoms may occur months to years later and cause long-term nervous system problems or arthritis. EM Rash 71

80 Appendix D (Continued) Unfortunately, blacklegged tick nymphs are small (about the size of a pinhead), difficult to see, and cause no itch or irritation at the site of the bite, so many people are not aware they have been bitten. If you have been in an area that might contain ticks and you experience any symptoms of Lyme disease, contact your doctor. The Treatment When Lyme disease is detected early, its effects can be mild and easily treated with antibiotics. In the late stages, Lyme disease can be treated successfully with antibiotics, but recovery may take considerably longer. Rocky Mountain Spotted Fever Rocky Mountain spotted fever (RMSF) is caused by infection with a bacterium called Rickettsia rickettsii. The disease is characterized by a sudden onset of symptoms and can be fatal if not treated. Nearly all cases occur in the spring and summer months. The Tick In Virginia, the American dog tick (Dermacentor variabilis) is the species known to carry the agent of Rocky Mountain spotted fever. The tick needs to feed on a host/person for only about four hours to transmit the bacteria. Fortunately, less than 1% of American dog ticks carry the agent of RMSF. The Symptoms Symptoms of Rocky Mountain spotted fever begin 2-14 days after the tick bite, and may include fever, deep muscle pain, severe headache, chills, and upset stomach or vomiting. From the third to fifth day of illness a red, spotted rash may appear, beginning on the wrists and ankles. The rash spreads quickly to the palms of the hands and soles of the feet and then to the rest of the body. However, only about half of RMSF patients develop a rash. The Treatment Antibiotic treatment for RMSF is effective, and suspected RMSF should be treated as soon as possible based on symptoms and a history of tick exposure. The risk of death from RMSF increases by the fifth day of illness - but the rash often does not occur until that time. Therefore, do not wait for RMSF blood test results, or the appearance of a rash, before starting treatment. Treatment is important; almost one-third of those who do not get treated die from this disease. Ehrlichiosis and Anaplasmosis Although several diseases can be caused by bacteria in the Ehrlichia and Anaplasma genera, the most common in Virginia are human monocytic ehrlichiosis (HME) and human granulocytic anaplasmosis (HGA). HME is transmitted only by the lone star tick (Amblyomma americanum) and most commonly by bites from adult ticks. Lone star ticks are very common and are responsible for the most tick bites to people in Virginia. HGA is transmitted only by the blacklegged tick (most commonly by bites from nymphal stage ticks). The bacteria causing HME or HGA will not be transmitted unless the infected tick has been attached and feeding for at least 24 hours. The Symptoms Symptoms for both HME and HGA can include fever, headache, muscle pain, vomiting, and general discomfort. Illness can be severe - up to 3% of patients may die if not treated. The Treatment HME and HGA respond rapidly to treatment with antibiotics. Treatment should be based on symptoms (including platelet and liver enzyme tests) and history of tick exposure. Treatment should not be delayed while waiting for ehrlichiosis- or anaplasmosis-specific serology results. Other Diseases Ticks can transmit other diseases, such as tularemia (rabbit fever) and babesiosis. Neither of these illnesses is common in Virginia. Tularemia is a bacterial disease that has a sudden onset of fever and chills. Typically, an ulcer develops at the site of the tick bite and surrounding lymph nodes become enlarged. Tularemia is a serious illness and untreated cases may be fatal. Tularemia is most commonly associated with the American dog tick, but may also be transmitted by the lone star tick. Babesiosis is caused by a parasite that infects red blood cells. The babesiosis agent is transmitted only by infected black- Spotted rash on arm and hand of RMSF patient. 72

81 Appendix D (Continued) Tick Identification Chart Tick-borne Disease Chart Tick-borne Diseases Anaplasmosis Ehrlichiosis Babesiosis Lyme Disease Blacklegged Tick Ixodes scapularis Lone Star Tick Amblyomma americanum American Dog Tick Dermacentor variabilis Vector Vector Vector Vector 73 Original image by Litwak for CDC; modified by D.N. Gaines for VDH. Rocky Mountain Spotted Fever Vector Tick Stage that Transmits the Most Disease to People Nymph Adult Nymph Nymph Adult Only Tularemia Vector Vector Nymph or Adult Minimum Feeding Time for Disease Transmission 24 hours 24 hours 36 hours 36 hours 4-6 hours Not known For more information on tick-borne diseases, visit June 2010

82 Appendix D (Continued) legged ticks. Symptoms include fever, chills, muscle aches, fatigue, and jaundice. Fatalities may occur in immuno-compromised or splenectomized patients. Prevention Ticks do not jump or fly; they wait on the forest floor, leaf litter, or low vegetation and attach to the feet or shoes of people or legs of animals as they pass by. The ticks then crawl upward. The following steps can reduce your risk of tick-borne diseases: Avoid potential tick habitats such as tall grass and vegetation in shaded areas, forests, and along forest edges. Walk in the center of mowed trails to avoid brushing against vegetation. Keep grass cut and underbrush thinned in yards. If pesticides are used for tick control, follow directions carefully or hire a professional to apply the pesticide. Eliminate wood piles and objects that provide cover and nesting sites for small rodents around your property. Wear light-colored clothing so that ticks are easier to see and remove. Tuck pant legs into socks and boots, tuck shirts into pants, and wear long-sleeved shirts buttoned at the wrist. Conduct tick checks on yourself and your children every four to six hours while in tick habitat. Apply tick repellent to areas of the body and clothing that may come in contact with grass and brush. Repellents include those containing up to 50% DEET for adults or less than 30% for children. An aerosol repellent/insecticide containing 0.5% permethrin may be applied to shoes, socks, and other clothing, but should not be used on skin. Follow directions carefully and do not overuse. Some tick repellents can cause toxic or allergic reactions. Ask your veterinarian to recommend tick control methods for your pets. Animals can get Lyme disease, Rocky Mountain spotted fever, and ehrlichiosis, but they do not transmit these diseases to humans. Tick Removal Because ticks do not transmit disease until they have been attached to the host for several hours or several days, it is very important to remove ticks as soon as they are found. The following is the best way to remove a tick: Grasp the tick with tweezers as close to the skin as possible and gently, but firmly, pull it straight out. Avoid any twisting or jerking motion that may break off the mouth parts in the skin. Mouth parts left in the wound may cause irritation or infection similar to a reaction from a splinter. If tweezers are not available, be careful not to squeeze or rupture the tick's swollen abdomen while removing it. This may cause an infectious agent to contaminate the bite site and cause disease. After the tick has been removed, wash hands with soap and water. Apply a topical antiseptic to the bite site. You can dispose of the tick by drowning it in alcohol or flushing it down a drain or toilet. However, it may be useful to save the tick in alcohol for several weeks and have it identified by an expert in case you become ill. Knowing what kind of tick bit you might help your doctor diagnose the illness. Tick removal using nail polish, petroleum jelly, alcohol or a hot match is not safe. These methods could cause the tick to regurgitate an infectious agent into the site of the bite. If you get sick, and you have been exposed to ticks, be sure to tell your doctor about your tick exposure. For more information, visit our website at: April