legislative budget and finance...

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 EXECUTIVE DIRECTOR

PHILIP R. DURGIN

Cost Estimates to Implement the Recommendations of the

Task Force on Lyme Disease and Related Tick-borne Diseases

Conducted Pursuant to Act 2012-121

October 2016

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 17105-8737 Tel: (717) 783-1600 • Fax: (717) 787-5487 • Web: http://lbfc.legis.state.pa.us

i

Table of Contents

Page

Report Summary ......................................................................................... S-1

I. Introduction ....................................................................................... 1

II. Background ........................................................................................ 3

III. Prevention Recommendations .......................................................... 16

IV. Education and Awareness Recommendations ............................... 32

V. Surveillance Recommendations ....................................................... 44

VI. Appendices ........................................................................................ 63

A. Lyme and Related Tick-Borne Disease Surveillance, Education, Prevention, and Treatment Act, Act 2014-83 ....................................... 64

B. Number of Lyme Disease Cases by State............................................... 68

C. Recommendations of the Task Force on Lyme Disease and Related Tick-Borne Diseases ............................................................................... 69

D. Virginia’s Brochure on Preventing Tick-borne Diseases ......................... 71

E. Emerging Tick-Borne Diseases ............................................................... 75

S-1

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 Common-wealth, 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 black-

legged 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 com-pletely. 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 Pennsylva-nia, on June 29, 2014, the General Assembly enacted Act 2014-83, 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 recommen-

dations.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 play-grounds on school properties). Determining estimated costs required us to make some assumptions, either because the data needed was not available (e.g., what lo-cal parks have already done to address Lyme disease concerns) or because the rec-ommendations 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-2

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 inac-curate, 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-to-four week course of antibiotics, some patients may continue to experience symptoms that last six months or more. The medical community is di-vided on how to prevent and treat such long-term cases.

The PA School Nurses Association does not regard Lyme disease as a ma-jor 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 pro-fessionals.

The Pennsylvania Game Commission (PGC) informed us that one of the three factors that impact how they manage deer in Pennsylvania is the in-teraction between deer herds and humans. While “interaction” is mostly thought of in terms of agriculture and road safety, it can also include con-cerns 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 inci-dence of Lyme disease in New England.

Normal maintenance (mowing lawns, mulching playgrounds, and remov-ing leaf debris) can do much to reduce the danger of Lyme disease at schools and parks. Using DEET-based repellants, wearing Permethrin-treated 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 preven-tative 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 cam-paigns in other states were very limited in scope. Much information is al-ready available for both the public and medical professionals at web sites

S-3

such as those hosted by the PA Department of Health, the Centers for Dis-ease 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.

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S-5

1

I. Introduction

The Lyme and Related Tick-borne Disease Surveillance, Education, Preven-tion, and Treatment Act, Act 2014-83,1 directed the Department of Health to estab-lish 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, pre-vention, and surveillance.

One recommendation of the Task Force on Lyme Disease and Related Tick-

borne 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 2015.

Methodology Much of our report is based on information provided by the Pennsylvania De-partment of Health and the federal Centers for Disease Control and Prevention. We also spoke to officials from the Pennsylvania Department of Agriculture; Pennsylva-nia Department of Conservation and Natural Resources; Pennsylvania Game Com-mission; Pennsylvania Department of General Services; Pennsylvania Nurses Asso-ciation; Maryland Center for Zoonotic and Vector-borne Diseases; Connecticut De-partment of Public Health; New York State Department of Health; New Jersey De-partment of Health; Maine Department of Health and Human Services; Wisconsin Department of Health Services; Virginia Department of Health; Minnesota Depart-ment of Health; New Hampshire Department of Health and Human Services; Rhode Island Department of Health; Vermont Department of Health; Delaware Depart-ment of Health and Social Services; Pennsylvania Commonwealth Media Services; PPO&S, Inc. (Partnership of Packer, Oesterling & Smith, Inc., integrated market-ing 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.

2

Pennsylvania Game Commission for their excellent cooperation in providing infor-mation 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 di-rected to Philip R. Durgin, Executive Director, Legislative Budget and Finance Com-mittee, P.O. Box 8737, Harrisburg, Pennsylvania 17105-8737.

3

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 de-partments 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 car-ried 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 dis-ease bacteria, although some believe the disease may be transmitted in as few as 24 hours. 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. Origins

Lyme disease was first recognized in 1975, after researchers investigated un-

usually large numbers of children being diagnosed with juvenile rheumatoid arthri-tis 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.

4

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 af-

ter 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 meas-ure antibodies, but it typically takes four to six weeks for them to develop. There-fore, 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 anti-bodies 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 indetermi-nate (sometimes called “equivocal”), the second step should be performed. The sec-ond 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

5

weeks to develop, tests performed before this time may be negative even if the per-son 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 iden-tify 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 treat-ment with drugs such as ceftriaxone or penicillin.

Patients who are treated for Lyme disease with the CDC’s recommended two-

to-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 re-ferred to as Chronic Lyme disease (CLD) or Post-treatment Lyme Disease Syn-drome (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 deter-mine 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 100-200 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 doxycy-cline. 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 So-ciety of America for detailed recommendations on treatment. The IDSA is currently in the process of updating its guidelines.

6

symptomatic after initial therapy, an approach which the CDC does not support, cit-ing 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 habi-tat, 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 up-

per Midwest. According to the CDC, 96 percent of cases are from 14 states: Con-necticut, Delaware, Maine, Maryland, Massachusetts, Minnesota, New Hampshire, New Jersey, New York, Pennsylvania, Rhode Island, Vermont, Virginia, and Wis-consin. 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 2013. 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 dimin-ished over time.

7

Table 1

Top 14 States by Confirmed Cases 2005 – 2014

State 2005 2006 2007 2008 2009 2010 2011 2012 2013 2014

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 247 338 529 780 791 559 801 885 1,127 1,169

Wisconsin 1,459 1,466 1,814 1,493 1,952 2,505 2,408 1,368 1,447 991

Virginia 274 357 959 886 698 911 756 805 925 976

Maryland 1,235 1,248 2,576 1,746 1,466 1,163 938 1,113 801 957

Minnesota 917 914 1,238 1,046 1,063 1,293 1,185 911 1,431 896

New Hampshire 265 617 896 1,211 996 830 887 1,002 1,324 622

Rhode Island 39 308 177 186 150 115 111 133 444 570

Vermont 54 105 138 330 323 271 476 386 674 442

Delaware 646 482 715 772 984 656 767 507 400 341

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 Com-monwealth accounted for just over a quarter of all confirmed cases of Lyme disease in 2014.

Exhibit 1

Lyme Disease Confirmed Cases, Top Five States 2005-2014

Source: Developed by LB&FC staff with data from the CDC.

-

1,000

2,000

3,000

4,000

5,000

6,000

7,000

2005 2006 2007 2008 2009 2010 2011 2012 2013 2014

Pennsylvania Massachusetts New York

New Jersey Connecticut

8

Pennsylvania was also in the top five states in terms of Lyme disease inci-dence 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 2024.

Table 2

Lyme Disease Incidence Rates Per 100,000 Population 2005 – 2014

Top 14 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, 2005 – 2014, Top Five States

Source: Developed by LB&FC staff with information provided by the CDC.

2005 2006 2007 2008 2009 2010 2011 2012 2013 2014

Maine 18.7 25.6 40.2 59.2 60 42.1 60.3 66.6 84.8 87.9

Vermont 8.7 16.8 22.2 53.1 51.9 43.3 76 61.7 107.6 70.5

Massachusetts 36.3 22.2 46.3 60.9 61 36.3 27.3 51.1 57 54.1

Rhode Island 3.6 28.8 16.7 17.7 14.2 10.9 10.6 12.7 42.2 54

Pennsylvania 34.6 26.1 32.1 30.7 39.3 26 37.2 32.5 39 50.6

Connecticut 51.7 51 87.3 78.2 78.2 55 56 46 58.7 47.8

New Hampshire 20.3 46.9 68.1 92 75.2 63 67.3 75.9 100 46.9

Delaware 76.7 56.5 82.7 88.4 111.2 73.1 84.6 55.3 43.2 36.4

New Jersey 38.6 27.9 36.1 37 52.8 37.8 38.5 30.8 31.3 29

Wisconsin 26.4 26.4 32.4 26.5 34.5 44 42.2 23.9 25.2 17.2

Minnesota 17.9 17.7 23.8 20 20.2 24.4 22.2 16.9 26.4 16.4

Maryland 22.1 22.2 45.8 31 25.7 20.1 16.1 18.9 13.5 16

New York 28.8 23.1 21.6 29.5 21.2 12.3 16 10.4 17.9 14.4

Virginia 3.6 4.7 12.4 11.4 8.9 11.4 9.3 9.8 11.2 11.7

United States 7.9 8.2 9.1 9.4 9.8 7.3 7.8 7 8.6 7.9

0

20

40

60

80

100

120

2005 2006 2007 2008 2009 2010 2011 2012 2013 2014

Maine Vermont Massachusetts Rhode Island Pennsylvania

9

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.

2005 – 2014


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 2014.

0

10

20

30

40

50

60

2005 2006 2007 2008 2009 2010 2011 2012 2013 2014

Pennsylvania United States

10

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 dis-

ease cases from 2000 through 2014, three are in Pennsylvania: Chester, Bucks, and Montgomery Counties (see Table 4).

11

Table 4

Top 10 Counties Number of Confirmed Cases


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, di-agnose and treat Lyme disease and related maladies.

To ensure that:

Health care professionals, insurers, patients, and governmental agen-cies are educated about the broad spectrum of scientific and treatment options regarding all stages of Lyme disease and related tick-borne ill-nesses.

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 re-garding the broad spectrum of scientific and treatment options regard-ing all stages of Lyme disease and related tick-borne illnesses.

A system is established for tick surveillance.

State County 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 2013 2014 Total

New York Dutchess 1,086 1,121 1,720 1,283 1,076 1,398 930 551 1,141 413 206 205 132 173 225 11,660

Pennsylvania Chester 566 818 818 974 637 670 481 627 698 983 637 775 610 489 200 9,983

Connecticut Fairfield 1,342 1,146 1,313 335 330 426 355 434 530 698 331 305 225 443 437 8,650

Massachusetts Middlesex 129 149 261 263 246 440 286 587 851 817 514 373 787 936 1,023 7,662

Pennsylvania Bucks 506 300 461 617 477 500 346 556 492 953 437 587 376 337 287 7,232

Pennsylvania Montgomery 410 362 342 846 514 535 481 510 513 458 373 431 248 301 384 6,708

New York Columbia 595 647 999 904 404 362 375 318 584 356 220 238 183 216 185 6,586

New Jersey Morris 461 416 398 440 339 524 292 330 404 640 479 478 401 558 408 6,568

New York Orange 611 532 541 587 518 536 467 290 396 419 241 316 189 257 194 6,094

Connecticut New London 439 448 641 170 181 312 317 407 286 579 340 314 263 402 406 5,505

12

Thus, the Lyme and Related Tick-Borne Disease Surveillance, Education, Prevention, and Treatment Act, Act 2014-83, was enacted on June 29, 2014. 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 in-formation 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 dis-ease, including, but not limited to, integrated pest management strate-gies, prompt removal and reporting of tick removals to parents, guardi-ans, and state officials.

Update policies to recognize signs or symptoms of Lyme disease and re-lated tick-borne illnesses as health conditions potentially requiring ac-commodations.

An active tick collection, testing, surveillance, and communication pro-gram.

Act 83 required the task force to be composed of the following 21 individuals:

The Secretaries of Health, Education, and the Commonwealth, or a de-signee.

The Deputy Secretary for Parks and Forestry in the Department of Con-servation and Natural Resources, or a designee.

The Director of the Bureau of Information and Education of the Pennsyl-vania Game Commission, or a designee.

13

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 con-cerning 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 veteri-nary 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 2014-83 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 2014-83 also gave the Department of Health the following powers and du-ties:

Develop a program of general public and health care professional infor-mation and education regarding Lyme disease which shall include the

14

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 De-partment of Environmental Protection, to provide a better understanding of, including, but not limited to, the full range of tick-borne diseases, geo-graphic hot spots and levels of infectivity to be used in targeting preven-tion, 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 web-site.

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 dis-ease, including, but not limited to, integrated pest management strate-gies 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 re-lated tick-borne illnesses as health conditions potentially requiring ac-commodations.

Cooperate with professional associations of health care professionals to provide an education program for professionals.

Cooperate with The Pennsylvania State University, Department of Ento-mology, cooperative extension program for integrated pest management, to disseminate educational resources about ticks, related diseases, and in-tegrated pest management for disease prevention to health care profes-sionals 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 commu-nication program. 4 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.

15

other entities, including the Northeast DNA Laboratory of East Strouds-burg 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 pro-gram. The data shall be communicated via public health alerts to health care professionals and made available on the Department’s publicly acces-sible Internet website.

16

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 ap-proaches) to reduce the risk of tick exposure on school properties and during school ac-tivities. 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, 2010-2014)

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 mem-

bership 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.

17

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 doc-tors. The LMS allows nurses to complete online training, earn continuing profes-sional accreditation, track progress, and share information with each other. For ex-ample, 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 Com-mission (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 manage-ment 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 activi-ties, 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

18

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 cen-tral 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 insec-ticide 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 de-vices 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 de-vices 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.

19

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 counter-measures 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 ani-mals. 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 lim-ited 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 cost-ing 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 out-lets 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 $649.

20

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 Penn-sylvania’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 prop-erty. 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 in-clude:

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 adja-cent 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), tick-

repellant 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 cloth-ing 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).

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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


Training $ 15,000 nominal nominal nominal nominal $ 15,000

Clothinga 289,800 $289,800 $289,800 $289,800 $289,800 1,449,500

4 Poster Devicesb 475,000 175,000 175,000 175,000 175,000 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 require-ments). Source: Developed by LB&FC staff.

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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 work-ing on tick awareness and prevention of tick-borne illness because about one-quarter 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 em-ployees 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 cloth-ing 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 employ-ees 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,

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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 Cen-ters 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 semi-skilled 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 2011-2015, 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

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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, https://www.nps.gov/gett/ 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 pro-vide some education about tick-borne diseases, this park holds tick education train-ing 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 dedicat-ed 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 ex-plain 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

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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 be-cause 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 trans-mitted. 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 poten-tial 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 per-tain to these devices. To install two 4-Poster devices at the 2,896 local parks great-er 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 Cost1 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 esti-mate. 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.

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Table 6



Item Year 1 Year 2 Year 3 Year 4 Year 5 Total CDC Signage – Local and State Parksa $85,350 nominal nominal nominal nominal $85,350

Total $85,350 nominal nominal nominal nominal $85,350


Item Year 1 Year 2 Year 3 Year 4 Year 5 Total CDC Signage – Local Parks $ 85,350 nominal nominal nominal nominal $ 85,350Clothing – Local parksb 1,621,760 $1,621,760 $1,621,760 $1,621,760 $1,621,760 8,108,8004 Poster Devices State Parksc 1,379,400 508,200 508,200 508,200 508,200 3,412,2004 Poster Devices – Local Parksd 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 Pennsyl-vania.

Source: Developed by LB&FC staff.

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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, how-ever, 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 in-fection 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 email 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 compa-nies 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.

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Distributing Information to General Practitioners According to a 2012 Department of Health report, there were 30,928 physi-cians providing direct patient care in Pennsylvania. The number of physicians practicing general or family medicine is 7,721, or 25 percent of all practicing physi-cians. Table 7 below shows those physicians who practiced general or family medi-cine.

Table 7

General or Family Practice Physicians in Pennsylvania

Primary Specialty

Adolescent Medicine .............. 20

Family Medicine ..................... 4,098

General Practice .................... 248

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 Pennsylva-nia’s Physicians and Physician Assistant Workforce.

Part of the Task Force’s intent with this recommendation is for a trainer/edu-

cator 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. As-suming 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 bro-chures 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.)

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Table 8



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


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 285,000 285,000 285,000 285,000 285,000 1,425,000

Total $439,400 $439,400 $439,400 $439,400 $439,400 $2,197,000 Source: Developed by LB&FC staff.

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D. Prevention Recommendation 4: Strategy for Reducing Transfusion-transmitted Babesiosis (TTB)1

Develop and implement strategy to reduce risk of transfusion transmitted Babesi-

osis (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 Administra-tion. 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 deliv-ery). In 2013, 14 cases of babesiosis in blood recipients were classified by the re-porting state as transfusion-associated.

Babsiosis in the Blood Supply Both the CDC and the U.S. Food and Drug Administration (FDA) have re-sponsibility 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 im-portant 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 mi-croscopic parasite that infects red blood cells.

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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 dis-eases 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, acci-dents, and adverse events related to blood collection and transfusion. FDA moni-tors the safety of blood and blood products by requiring reporting of errors and acci-dents associated with the manufacturing and distribution of blood and blood prod-ucts. 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, alt-hough 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 devel-oped 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.

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IV. Education & Awareness1

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 under-standing of TBDs in Pennsylvania, and establish working relationships with partners that represent key stakeholders.

The costs associated with undertaking public awareness campaigns in Penn-sylvania 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 lim-ited, 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 com-ponent 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 ex-ample, 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 work-

ing 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.

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the DHMH website was modified. The campaign worked primarily through the ex-isting structure of local health departments. Unfortunately, with no dedicated funding, no evaluations have been conducted to assess the effectiveness of the cam-paign. In Pennsylvania last year, the Department of Health undertook a low-cost public awareness campaign designed to encourage flu vaccinations. The 2015 Stop-ping 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 crea-tive planning and work was produced in-house by DOH’s communications office, and the materials were not physically printed but only made available electroni-cally. 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 agen-cies can access tools and resources designed specifically for local health agency pro-fessionals, including the CDC Communication Resource Center (CRC). This re-source center offers free CDC-produced communication materials that can be down-loaded, 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 nu-merous public appearances and reached out to Pennsylvanians statewide via social media to further spread in-formation 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.

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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 2007. 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 pre-vention 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 BLAST6 preven-tion model ($280,000).

DPH summarized the $170,000 media campaign as follows: DPH would develop and execute a social marketing campaign with ele-ments that reach statewide and targeted audiences with important in-formation about Lyme disease prevention. An integrated marketing campaign will be created to promote Lyme disease prevention. Strate-gies may include components such as TV and radio spots, online ban-ner ads, point of purchase ads, social media and public relations strate-gies. The campaign activities would peak during April-May and Au-gust-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 popula-tions around the home, and (3) need for early diagnosis of Lyme dis-ease and other tick-borne illnesses such as anaplasmosis and babesio-sis.

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 commu-nity, corporate, and public health partnerships that have been sustained locally and positioned to expand statewide.

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due to the state’s current budget situation. Funding for FY 2015-16 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 De-partment 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 co-

vers several forms of media, including inserts in newspapers, online, the Depart-ment of Health website, television advertisements, bus shelter postings, and bill-boards. A state Department of Health official said the recent trend is to focus re-sources 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 aware-ness materials and tools comes from several sources:

The TBD (Tick-Borne Disease) Institute, similar to NIH, provides approxi-mately $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 recommen-dations or projects as well as grants to earmarked groups (such as univer-sities 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 Inter-net advertising.

Higher Cost Campaigns Department of Health Estimate. Pennsylvania’s Department of Health esti-mated costs associated with the implementation ideas in the Task Force report re-garding a public awareness campaign as listed in Table 9. DOH has undertaken both low cost campaigns as well as higher cost campaigns.

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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 comprehen-sive, statewide public awareness campaign. This would in-clude design and implementation of graphic material for promotion, such as posters, web material, TV advertise-ments, etc. $100,000

Promotional Activities 2. DOH listed most of their estimated costs in this category. These estimates are below:

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

$1,985,000 Events/Activities 3. DOH did not identify any specific cost estimate for actual

Lyme disease awareness events or activities. $0 Coordination among agencies/stakeholders

4. DOH indicated that existing multi-agency coordination through the existing Arboviral Workgroup does not work ef-fectively and is fairly minimal. $0

Total $2,085,000 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 them-selves, and encourage immunization. Costs were budgeted in three categories: pre-vention, 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:

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Table 10

Pennsylvania’s H1N1 Prevention Campaign Budget

Creative Services Firm 1 ................................................. $149,951 Firm 2 ................................................. $ 82,852

Media Placement TV ...................................................... $118,300 Radio .................................................. 223,335 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 en-courage 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 me-dia and public relations tools were used. As shown on Table 11, the budget was:

Table 11

Pennsylvania’s H1N1 Vaccination Campaign Budget

Creative Services Firm 1 ................................................. $527,617 Firm 2 ................................................. $ 88,610

Media Placement TV ....................................................... $657,757 Radio .................................................. 528,135 Online ................................................. 53,000 Outdoor .............................................. 137,970a Lifestyle .............................................. 105,000b

Sub-Total Media .............................. $1,567,615

Total Vaccination ................................ $2,183,842 _______________ a Posters, Transit b Gas Toppers

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 preven-tion and preparation education; tools to promote and manage healthcare worker vaccinations; and outreach to hospitals, health facilities, and healthcare profession-als. The budget was as shown on Table 12.

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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, commu-nications, 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 50,000 0 0 0 0 30 300,000 Concept and

Development 30 300,000 15 150,000 5 50,000 Grassroots/Public Relations 5 50,000 15 150,000 15 150,000 20 200,000

Media Placement 45 450,000 65 650,000 65 650,000 50 500,000

Total 100% $1,000,000 100% $1,000,000 100% $1,000,000 100% $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

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based on Year 1 experiences. Fifteen percent would go to grassroots out-reach.7 Again, the largest single expenditure would be for media placement, cover-ing 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 pub-lic 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 activi-ties to avoid influencing results. Full media placement would resume after the re-search. 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 place-ment.

Estimated Cost See Table 14 for the estimated cost.

Table 14

Estimated Cost for Comprehensive Education and Awareness Campaign


Item Year 1 Year 2 Year 3 Year 4 Year 5 Total Prevention Creative8 $ 232,803 $ 0 $ 0 $ 0 $ 0 $ 232,803 Media 432,385 432,385 432,385 432,385 432,385 2,161,925Vaccination Creative 616,227 0 0 0 0 616,227 Media 1,567,615 1,567,615 1,567,615 1,567,615 1,567,615 7,838,075Outreach Creative 270,000 0 0 0 0 270,000 Media 81,137 81,137 81,137 81,137 81,137 405,685Total $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 net-work 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.

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B. Education & Awareness Recommendation 2: Health Care Provider Prevention (HCP) Education1

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 promis-ing practices (recordings and presentation slides made available on the PA DOH website.)

3. Webinars, presentations, emails, and other one-time communications hosted in partnership with HCPs.

DOH indicated that an online clearinghouse of Lyme disease-related infor-mation for health care professionals already exists via the DOH website. See Ex-hibit 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 pro-fessionals varies by the type of program that is intended. The planning would re-quire 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.

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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 re-port 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 physi-cian. 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: http://www.health.pa.gov/My%20Health/Dis-eases%20and%20Conditions/I-L/Pages/Lyme-Disease-.aspx#.V_0ziW_D-pp.

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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 http://www.cdc.gov/lyme. Here the CDC provides arti-cles 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, 2011.

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, 2015.

Lyme Disease Persistence, 2014.

Novel and Emerging Tick-borne Diseases – Agents, Clinical Features, and Surveillance, 2013.

Lyme Disease Diagnostics, 2012.

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Many Lyme disease advocacy groups also maintain websites with relevant in-formation. Estimated Cost

We estimate that there would be a range of no additional cost to the Com-

monwealth to approximately $1,500 per event. See Table 15.

Table 15

Maximum Estimated Cost for Education and Awareness Recommendation 2



One-Day Symposiuma $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.

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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) Re-port TBDs not included on the Pennsylvania notifiable disease list. Encourage provid-ers 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 dis-eases 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 adminis-trative function of the Department of Health and that it carries no specific addi-tional 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 recom-mendation.

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B. Surveillance Recommendation 2: Statewide Environmental Survey

Increase the public, medical, and scientific community’s awareness of tick popu-

lations 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, med-ical, and scientific community’s awareness of tick populations and the diseases they carry.” Inasmuch as the Task Force found that information is not currently availa-ble on the distribution and occurrence of ticks and their diseases in the state, the Task Force believes that undertaking a comprehensive survey will assist stake-holders 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 al-lows 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 col-lected 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

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repeatedly sample for ticks by “dragging and flagging” using standardized protocol sites in all 67 counties. Each technician would have a “home area” (1/10th 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 collec-tion 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 in-clude all life stages for ticks. Testing would be for borrelia burgdorferi, babesia mi-croti, 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 Costa


Salaries $289,879 $312,488 $327,264 $342,826 $359,128 $1,631,585

Equipment/Supplies 131,000 14,961 14,961 14,961 14,961 190,844

Total $420,879 $327,449 $342,225 $357,787 $374,089 $1,822,429

Maximum Estimated Costb


Salaries $ 621,697 $635,193 $649,094 $ 663,411 $ 678,159 $3,247,554

Equipment/Supplies 449,000 333,720 343,732 354,043 364,664 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.

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C. Surveillance Recommendation 3: Funding for Research and Information Sharing

Earmark state budgeted appropriations to conduct research and share infor-

mation 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 Common-

wealth 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 pro-vide more applicable information to physicians. It is anticipated that state agencies would benefit from the information derived from increased research funding by al-lowing for more informed decision-making. Finally, research institutions would benefit because tick-borne disease studies would receive funding for new and inno-vative projects.

Several ideas for implementing this Task Force recommendation are high-

lighted 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.

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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 De-partment 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, Vir-ginia, 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 re-sources 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 (2010 – 2014)

State Grants Cases

Connecticut .............. 3,515,224 9,451

Delaware .................. 205,527 2,671

Maine ........................ 189,367 4,541

Maryland ................... 1,508,881 4,972

Massachusetts ......... 211,447 15,039

Minnesota ................. 1,366,082 5,716

New Hampshire ........ 175,853 4,665

New Jersey ............... 554,982 14,824

New York .................. 1,149,572 2,853

Pennsylvania .......... 108,736 23,634

Rhode Island ............ 1,103,984 1,373

Vermont .................... 162,655 2,249

Virginia ...................... 181,918 4,373

Wisconsin ................. 269,940 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 re-port. 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.

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Table 18

Grant Dollars Per Case 2010 – 2014

State Grant $ Per Case

Rhode Island .............. $804.07

Connecticut ................ 371.94

Maryland ..................... 303.48

New York .................... 299.76

Minnesota ................... 238.99

Delaware .................... 76.95

Vermont ...................... 72.32

Maine .......................... 41.70

Virginia ....................... 41.60

New Hampshire .......... 37.70

New Jersey ................. 37.44

Wisconsin ................... 30.96

Massachusetts ........... 14.06

Pennsylvania ............ 4.60 Source: Developed by LB&FC staff using data from CDC

The CDC distributes most of its Lyme disease funds to the states via coopera-

tive 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 con-structed 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 #3 ............. 559,614

Option #4 ............. 802,057 Source: Developed by LB&FC staff using data from CDC.

For Option 1, we took the most recent number of CDC confirmed Lyme dis-

ease cases in Pennsylvania (6,470) and multiplied that number by the highest aver-age 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.

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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 re-

ported 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 dis-ease 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 re-

ported annually, Option 4 ($802,000) would appear to be a reasonable target for the Department of Health to pursue for CDC funding.

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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. Observa-tion 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 con-trol and prevention. While Lyme disease is included in the Pennsylvania National Notifiable Disease Surveillance System (PA-NNDSS), underreporting of Lyme dis-ease is common, and routinely-collected public health surveillance data do not pro-vide sufficient information for Lyme disease research. As such, important gaps ex-ist regarding Lyme disease awareness by the general public, adherence to Lyme dis-ease 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 obser-

vational epidemiologic studies. Unlike experimental studies, where a researcher at-tempts 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 resi-dents.

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 con-duct long-term outcome studies.

Collaborate with academic institutions and seek support for study activi-ties 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 Pennsyl-

vania institutions of higher education that have Masters programs in public health

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or similar programs; Pennsylvania academic medical institutions; and the Pennsyl-vania 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 Col-lege 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 sim-ilar programs will work with the Pennsylvania Department of Health (DOH). Re-searchers 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 dis-

ease exposure, risk factors, treatment approaches, and Lyme disease-related com-plications. They would then follow the patients in the sample through the end of 2020. 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 out-comes of Lyme disease.

The results of the prospective and retrospective data collection would be com-

pared 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 infor-mation, researchers hope to identify risk factors that lead to exposure to and acqui-sition of Lyme disease. Entities such as the Penn State Research Center would conduct a population-based random telephone survey and/or an internet-based sur-vey to collect information from a representative sample of Pennsylvania residents – roughly 12,000.1 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.

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Interventions Various interventions are discussed elsewhere in this report. However, the

results of the longitudinal study and the population survey should be used to deter-mine 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 liv-

ing 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 in-clude 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



Salaries $1,382,063 $1,409,863 $1,438,360 $1,467,558 $1,495,061 $7,292,909

Equipment/ Supplies 276,412 281,971 307,672 293,514 299,014 1,458,580

Brochure 0 0 100,000 0 0 0

Total $1,658,475 $1,691,834 $1,846,033 $1,761,072 $1,794,075 $8,751,489


2 Cost estimates assumed a five-year period and applied the current NIH salary cap of $185,100. These num-bers are estimated using Penn State’s budgeting system, which automatically includes a 2.5 percent cost of liv-ing increase on salaries and wages.

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E. Surveillance Recommendation 5: Diagnostic Testing – Annual Updates

Provide annual updates for, and enhance availability of, a broad array of diag-

nostic 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, reli-

ability, 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 recommenda-

tion:

Encourage participation in tick-borne disease diagnostic development by universities and academic medical institutions in the Common-wealth.

The PA DOH Bureau of Laboratories, in collaboration with CDC, cur-rently has services available to support the early diagnosis of non-Lyme tick-borne diseases (Babesiosis, Powassan, and tick-borne rick-ettsial 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 Pennsylva-nia 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 2001. The Bureau of Laboratories currently receives only 20-30 requests per year.

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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 Depart-

ment of Laboratories’ guidelines, by a Microbiologist 2, the cost for which is approxi-mately $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 speci-mens. 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 (Ari-zona), 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 ac-curate diagnostic tests.

Estimated Cost

We assumed the number of Lyme tests performed by the state lab increased

tenfold. See Table 21.

1 This figure includes salary and benefits.

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Table 21




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



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.

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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 re-porting 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 report-

ing 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 dis-ease 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 care1 physicians in Pennsylvania.2 The cost for produc-ing a custom interface for automated tick-borne disease case reporting within an al-ready 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. 2 2012 Pulse of Pennsylvania’s Physician and Physician Assistant Workforce, A Report on the 2012 Surveys of Physicians and Physician Assistants, Volume 5, June 2014.

58

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 ........................................... 4.5

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 email blast

from the Department of Health email system. The costs associated with this por-tion 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 cur-rently has the capacity to send advisories to school nurses and other entities regu-lated by the Department. Again, the costs associated with sending a blast email are minimal and could reasonably fit within the current appropriation.

Estimated Cost If the Commonwealth were to mandate automated electronic reporting of Lyme dis-ease 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 22.

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Table 22


Minimum Estimated Costa

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 Costb

Item Year 1 Year 2 Year 3 Year 4 Year 5 Totalc

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.


60

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 po-tential co-infections with other tick-borne pathogens, and help identify potential risk fac-tors 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, occu-pation, 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 Sur-veillance System.

Implementation of this recommendation appears to be relatively straight-for-

ward. 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.

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H. Surveillance Recommendation 8: Surveillance Data Website

Use a centralized, publically-accessible website to disseminate summaries of hu-man, 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 Depart-ment of Health Division of Epidemiology.

To determine the cost of creating and maintaining the website for this recom-mendation, we contacted the Department of Environmental Protection Bureau of Fiscal Management. DEP has a webpage devoted to West Nile Virus and dissemi-nates information similar to that required by the recommendation. We also used in-formation provided by the Pennsylvania State University Center for Infectious Dis-ease Dynamics. Estimated Cost

We estimate the cost for creating and maintaining a web platform for out-

reach and data entry and management to be between $40,000 and $45,000 per year. See Table 23.

Table 23




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



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


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VI. Appendices

64

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.

65

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, late-stage, 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 tick-

borne 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 tick-borne 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.

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(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.

67


(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 tick-borne 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.

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APPENDIX B

Lyme Disease Cases by State

State 2005 2006 2007 2008 2009 2010 2011 2012 2013

2014 2014 2014

Confirmed Probable Incidence*

Alabama 3 11 13 6 3 1 9 13 11 28 36 0.6

Alaska 4 3 10 6 7 7 9 4 14 5 3 0.7

Arizona 10 10 2 2 3 2 8 7 22 14 7 0.2

Arkansas 0 0 1 0 0 0 0 0 0 0 0 0

California 95 85 75 74 117 126 79 61 90 54 19 0.1

Colorado 0 0 0 2 0 1 0 0 0 0 0 0

Connecticut 1,810 1,788 3,058 2,738 2,751 1,964 2,004 1,653 2,111 1,719 641 47.8

Delaware 646 482 715 772 984 656 767 507 400 341 76 36.4

DC 10 62 116 71 53 34 N N 33 35 5 5.3

Florida 47 34 30 72 77 56 78 67 87 85 70 0.4

Georgia 6 8 11 35 40 10 32 31 8 4 0 0

Hawaii 0 0 0 0 0 0 0 0 0 0 0 0

Idaho 2 7 9 5 4 6 3 0 14 8 1 0.5

Illinois 127 110 149 108 136 135 194 204 337 233 0 1.8

Indiana 33 26 55 42 61 62 81 64 101 100 10 1.5

Iowa 89 97 123 85 77 68 72 92 153 110 84 3.5

Kansas 3 4 8 16 18 7 11 9 18 12 8 0.4

Kentucky 5 7 6 5 1 5 3 8 17 11 33 0.2

Louisiana 3 1 2 3 0 2 1 3 0 0 2 0

Maine 247 338 529 780 791 559 801 885 1,127 1,169 232 87.9

Maryland 1,235 1,248 2,576 1,746 1,466 1,163 938 1,113 801 957 416 16

Massachusetts 2,336 1,432 2,988 3,960 4,019 2,380 1,801 3,396 3,816 3,646 1,658 54.1

Michigan 62 55 51 76 81 76 89 80 114 93 34 0.9

Minnesota 917 914 1,238 1,046 1,063 1,293 1,185 911 1,431 896 520 16.4

Mississippi 0 3 1 1 0 0 3 1 0 2 0 0.1

Missouri 15 5 10 6 3 4 5 1 1 7 3 0.1

Montana 0 1 4 6 3 3 9 6 16 5 2 0.5

Nebraska 2 11 7 8 4 7 7 5 7 6 1 0.3

Nevada 3 4 15 9 10 2 3 10 11 4 2 0.1

New Hampshire 265 617 896 1,211 996 830 887 1,002 1,324 622 102 46.9

New Jersey 3,363 2,432 3,134 3,214 4,598 3,320 3,398 2,732 2,785 2,589 697 29

New Mexico 3 3 5 4 1 3 2 1 0 0 0 0

New York 5,565 4,460 4,165 5,741 4,134 2,385 3,118 2,044 3,512 2,853 883 14.4

North Carolina 49 31 53 16 21 21 18 27 39 27 143 0.3

North Dakota 3 7 12 8 10 21 22 10 12 2 12 0.3

Ohio 58 43 33 40 51 21 36 49 74 94 25 0.8

Oklahoma 0 0 1 1 2 0 2 1 1 0 0 0

Oregon 3 7 6 18 12 7 9 5 12 3 42 0.1

Pennsylvania 4,287 3,242 3,994 3,818 4,950 3,298 4,739 4,146 4,981 6,470 1,017 50.6

Rhode Island 39 308 177 186 150 115 111 133 444 570 334 54

South Carolina 15 20 31 14 25 19 24 35 33 20 17 0.4

South Dakota 2 1 0 3 1 1 2 4 3 2 0 0.2

Tennessee 8 15 31 7 10 6 5 2 11 7 10 0.1

Texas 69 29 87 105 88 55 28 33 48 20 20 0.1

Utah 2 5 7 3 6 3 6 2 10 5 8 0.2

Vermont 54 105 138 330 323 271 476 386 674 442 157 70.5

Virginia 274 357 959 886 698 911 756 805 925 976 370 11.7

Washington 13 8 12 22 15 12 17 13 11 8 7 0.1

West Virginia 61 28 84 120 143 128 107 82 116 112 24 6.1

Wisconsin 1,459 1,466 1,814 1,493 1,952 2,505 2,408 1,368 1,447 991 370 17.2

Wyoming 3 1 3 1 1 0 1 3 1 2 1 0.3

U.S. Total 23,305 19,931 27,444 28,921 29,959 22,561 24,364 22,014 27,203 25,359 8,102 7.9


69

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

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.

Surveillance

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.

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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) long-term 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 2015.

71

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

EM Rash

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 qual- ify 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.

72

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 con- tain 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.

Spotted rash on arm and hand of RMSF patient.

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 caus- ing 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-

73

Appendix D (Continued) Tick Identification Chart

Tick-borne Disease Chart

Tick-borne Diseases

Anaplasmosis

Ehrlichiosis

Babesiosis Lyme Disease

Rocky Mountain

Spotted Fever

Tularemia

Blacklegged Tick Ixodes scapularis Vector

Vector Vector

Lone Star Tick Amblyomma americanum Vector

Vector

American Dog Tick Dermacentor variabilis Vector

Vector

Tick Stage that Transmits the Most Disease to People

Nymph

Adult

Nymph Nymph

Adult Only

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 www.vdh.virginia.gov/TickBrochure. June 2010

Original image by Litwak for CDC; modified by D.N. Gaines for VDH.

74

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 twist- ing 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 rup- ture 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:

www.vdh.virginia.gov/epidemiology/DEE/Vectorborne/index.htm

www.vdh.virginia.gov

April 2010

75

APPENDIX E

Emerging Tick Borne Diseases in the United States

Anaplasmosis Transmitted to humans by tick bites primarily from the blacklegged tick (Ixodes scapularis) in the northeastern and upper Midwestern U.S. and the western blacklegged tick (Ixodes pacificus) along the Pacific coast. Typical symptoms include: fever, headache, chills, and muscle aches.

Babesiosis Caused by microscopic parasites that infect red blood cells. Most human cases of babesiosis in the U.S. are caused by Babesia microti. Babesia microti is transmitted by the blacklegged tick (Ixodes scapularis) and is found primarily in the northeast and upper midwest. Symptoms include fever, chills, sweats, headache, body aches, loss of appetite, nausea, or fatigue.

Borrelia mayonii Infection has recently been described as a cause of illness in the upper midwestern United States. It has been found in blacklegged ticks (Ixodes scapularis) in Minnesota and Wisconsin. Borrelia mayonii is a new species and is the only species besides B. burgdorferi known to cause Lyme disease in North America. Symptoms - fever, headache, rash, and neck pain in the early stages of infection (days after exposure) and arthritis in later stages of infection (weeks after exposure), nausea and vomiting, diffuse rashes, and a higher concentration of bacteria in the blood.

Borrelia miyamotoi Recently been described as a cause of illness in the U.S. It is transmitted by the blacklegged tick (Ixodes scapularis) and has a range similar to that of Lyme disease. Patients with this infection are most likely to have fever, chills, headache, body and joint pain, and fatigue.

Colorado tick fever Transmitted by the Rocky Mountain wood tick (Dermacentor andersoni). It occurs in the the Rocky Mountain states at elevations of 4,000 to 10,500 feet. Common symptoms of CTF are fever, chills, headache, body aches, and feeling tired.

Ehrlichiosis Transmitted to humans by the lone star tick (Ambylomma americanum), found primarily in the southcentral and eastern U.S. Typical symptoms include: fever, headache, fatigue, and muscle aches.

Heartland virus Infection has been identified in eight patients in Missouri and Tennessee as of March 2014. Studies suggest that Lone Star ticks may transmit the virus. It is unknown if the virus may be found in other areas of the U.S. Symptoms include fever, fatigue, headaches, muscle aches, diarrhea, loss of appetite, or feeling nauseous.

Lyme disease Transmitted by the blacklegged tick (Ixodes scapularis) in the northeastern U.S. and upper midwestern U.S. and the western blacklegged tick (Ixodes pacificus) along the Pacific coast. Typical symptoms include fever, headache, fatigue, and a characteristic skin rash called erythema migrans. If left untreated, infection can spread to joints, the heart, and the nervous system.

76

Appendix E (Continued) Powassan disease Transmitted by the blacklegged tick (Ixodes scapularis) and the

groundhog tick (Ixodes cookei). Cases have been reported primarily from northeastern states and the Great Lakes region. Signs and symptoms of infection can include fever, headache, vomiting, weakness, confusion, seizures, and memory loss. Long-term neurologic problems may occur.

Rickettsia parkeri Transmitted to humans by the Gulf Coast tick (Amblyomma maculatum). Symptoms include fever, headache, scabs, and variable rash.

Rocky Mountain spotted fever

Transmitted by the American dog tick (Dermacentor variabilis), Rocky Mountain wood tick (Dermacentor andersoni), and the brown dog tick (Rhipicephalus sangunineus) in the U.S. The brown dog tick and other tick species are associated with RMSF in Central and South America. Typical symptoms include: fever, headache, abdominal pain, vomiting, and muscle pain. A rash may also develop, but is often absent in the first few days, and in some patients, never develops. Rocky Mountain spotted fever can be a severe or even fatal illness if not treated in the first few days of symptoms.

STARI Transmitted via bites from the lone star tick (Ambylomma americanum), found in the southeastern and eastern U.S. Symptoms include fatigue, fever, headache, muscle and joint pains.

Tickborne relapsing fever

Transmitted to humans through the bite of infected soft ticks. TBRF has been reported in 15 states: Arizona, California, Colorado, Idaho, Kansas, Montana, Nevada, New Mexico, Ohio, Oklahoma, Oregon, Texas, Utah, Washington, and Wyoming and is associated with sleeping in rustic cabins and vacation homes. Characterized by recurring episodes of fever, headache, muscle and joint aches, and nausea.

Tularemia Transmitted to humans by the dog tick (Dermacentor variabilis), the wood tick (Dermacentor andersoni), and the lone star tick (Amblyomma americanum). Tularemia occurs throughout the U.S. The signs and symptoms of tularemia vary depending on how the bacteria enter the body. They may include skin ulcers, swelling of lymph glands, eye irritation and inflammation, sore throat, mouth ulcers, tonsillitis, cough, chest pain, and difficulty breathing.

364D rickettsiosis Transmitted to humans by the Pacific Coast tick (Dermacentor occidentalis ticks). This is a new disease that has been found in California. Symptoms may include fever and scabs.

Source: Centers for Disease Control and Prevention.

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