Task Force Final Report

Commonwealth of Virginia

The Governor’s Task Force on Lyme Disease

FINAL REPORT

Adopted Unanimously on June 30, 2011

Introduction

In response to reports of the growing number of cases of Lyme

disease and other tick-borne illnesses and out of a sense of concern

for the significant number of Virginians infected with these

diseases, Governor Bob McDonnell and Secretary William Hazel

convened this task force to study and make recommendations in

the following areas:

• Diagnosis

• Treatment

• Prevention

• Impact on Children

• Public Education

The Governor and the Secretary appointed the following persons to

serve on the Virginia Task Force on Lyme Disease:

Michael Farris, Chairman, The Governor’s Task Force on Lyme

Disease; Chancellor, Patrick Henry College

Heather Applegate, Ph.D., child psychologist. Supervisor, Diagnostic

and Prevention Services, Loudoun County Public Schools and

private clinician

Dianne L. Reynolds-Cane, MD, Director, Virginia Department of

Health Professions

Douglas W. Domenech, Secretary of Natural Resources,

Commonwealth of Virginia

Bob Duncan, Executive Director, Virginia Department of Game and

Inland Fisheries, Commonwealth of Virginia

Keri Hall, MD, MS, State Epidemiologist, Virginia Department of

Health

William A. Hazel, Jr., MD, Secretary of Health and Human

Resources, Commonwealth of Virginia

Kathy Meyer, co-organizer of Parents of Children with Lyme Support

Network, Northern Virginia

Samuel Shor, MD, FACP, Associate Clinical Professor

George Washington University Health Care Sciences and private

practice, Internal Medicine, Reston, VA

Monte Skall, Executive Director, National Capital Lyme and Tick-

Borne Disease Association, Mclean, VA

Lisa Strucko, Pharm.D. Clinical Pharmacist, Leesburg Pharmacy,

Leesburg, VA

Rand Wachsstock, DVM, veterinarian, Springfield, VA and former

instructor in biochemistry at Yale University.

The Task Force held eight separate hearings with two distinct

hearing categories.

There were five separate hearings devoted to citizens of Virginia who

had been impacted by Lyme and other tick-borne illnesses. These

hearings were held in:

• Virginia Beach

• Richmond

• Roanoke

• Springfield

• Harrisonburg

Over 100 citizens testified at these hearings. We were profoundly

impacted by this testimony and thank the citizens for their

sacrificial efforts to testify.

A second set of hearings were held devoted to particular topics. At

these topical hearings, the bulk of the testimony was from subject

matter experts, supplemented by testimonies from citizens that had

been asked to focus on the particular issue at hand. The following

expert witnesses appeared before our Task Force in these hearings:

Diagnosis & Treatment

Marty Schriefer, MD, Chief of Diagnostic and Reference Laboratory,

Centers for Disease Control and Prevention

Daniel Cameron, MD, Past President of International Lyme and

Associated Diseases Society, epidemiologist and private practice,

Internal Medicine, Mt. Kisco, NY.

Elizabeth L. Maloney, MD, Lyme disease educator and Family

Practice physician, Wyoming, MN

Paul G. Auwaerter, MD, representative, Infectious Diseases Society

of America

Prevention

Charles S. Apperson, Ph.D., Dept. of Entomology, North Carolina

State University

Kerry Clark, MPH, Ph.D. Associate Professor, Epidemiology &

Environmental Health, Department of Public Health, University of

North Florida

David N. Gaines, Ph.D., Public Health Entomologist, VA Department

of Health, Office of Epidemiology

J. Mathews (Mat) Pound, Ph.D., Research Entomologist, USDA-ARS

Knipling-Bushland U.S. Livestock Insects Research Service

Nelson Lafon, Deer Project Leader, VA Department of Game and

Inland Fisheries

Impact on Children

Leo J. Shea III, Ph.D., neuropsychologist, Neuropsychological

Evaluation & Treatment Services, P.C., New York, NY

Carolyn Walsh, MD, private practice, Internal Medicine, Lansdowne,

Daniel E. Keim, MD, private practice, Pediatric Infectious Disease,

Fairfax and Leesburg, VA

Jennifer Jones, RN, BSN, NCSN, School Nurse, Trinity Christian

School, Fairfax, VA

Public Education

Jorge Arias, Ph.D., entomologist and Supervisor, Disease Carrying

Insects Program, Fairfax County Department of Health, Fairfax, VA

Robert Bransfield, MD, President, International Lyme and

Associated Diseases Society, Associate Director of Psychiatry and

Chairman of Psychiatric Quality Assurance, Riverview Medical

Center, and private practice, Psychiatry, Red Bank, NJ

Graham Hickling, Ph.D., Research Associate Professor, University of

Tennessee, Director of UT Center for Wildlife Health, Knoxville, TN

Wayne Hynes, Ph.D., Professor and Chair of the Department of

Biological Sciences at Old Dominion University, Norfolk, VA

Holly Gaff, Ph.D., Assistant Professor in the Department of

Biological Sciences at Old Dominion University, affiliated with the

Virginia Modeling, Analysis and Simulation Center, Norfolk, VA.

Peter F. Demitry, MD, MPH, former Assistant Surgeon General,

United States Air Force, and current President, 4-D Enterprises,

Haymarket, VA

The Task Force made every effort to seek a balanced approach in

each of the topical areas where there are recognized divergent views.

In general, we were able to find willing witnesses representing a

variety of viewpoints on such issues.

We received substantial support from the Virginia Department of

Health, Secretary Hazel and the Office of the Secretary of Health

and Human Resources for which we offer our deep thanks.

We also received the generous cooperation of a number of public

and private organizations, which allowed us to hold our hearings

without cost. We thank the following organizations for this valuable

contribution:

Patrick Henry College

Regent University

James Madison University

Roanoke Public Schools (Stonewall Jackson Middle School)

Immanuel Bible Church

Fairfax County Board of Supervisors

Loudoun County Board of Supervisors

Virginia Department of Health

We begin our findings with some general observations that should

be considered by all to be non-controversial in character:

General Observations

• Lyme Disease and other tick-borne related illnesses are

affecting significant and growing numbers of Virginians

• These diseases are present in every region of Virginia

• Virginia is in a particularly vulnerable geographical location,

being at the crossroads of the frontline of expansion of Lyme

disease carrying ticks from the North and other tick

populations that have entered Virginia from the South, the

public health risks of which are uncertain. These diseases can

have significant, life-altering impact on patients, especially

when the diagnosis is not made shortly after the patient is

infected.

• Lyme disease is caused by a spirochete bacterium in the same

family as syphilis. It can invade multiple organ systems and

has a variable multi-stage progression with a tremendous

range of symptoms. It is thought that humans develop no

long-term immunity and there is no available vaccine.

• There is much that remains to be understood about Lyme and

related diseases in every relevant sector including diagnosis,

treatment, and prevention.

• There is an acute need for greater research in all relevant

spheres.

• Medical personnel need accurate, fact-based information

about prevalence, diagnosis, treatment, and prevention of tick-

borne diseases. It is critical to raise awareness in the medical

community about Lyme and other tick-borne diseases.

• The mandatory reporting of Lyme disease to the Virginia

Department of Health (VDH) can be overlooked or forgotten by

some medical providers, leading to an undercount of the

number of patients affected.

• The CDC case definition for Lyme disease is for epidemiological

purposes only and is not now and never has been the singular

valid basis for a diagnosis of Lyme disease.

• Public awareness concerning the prevalence, symptoms and

prevention of Lyme disease needs significant expansion.

• Significant improvements that can help to prevent Lyme

disease are possible. This will require a concerted,

multifaceted effort requiring the cooperation and action of

every sector of Virginia—governmental, private, business,

community, family, and individual.

General recommendation

Recommendation:

The task force should recommend that VDH receive funding to

enhance its tick-borne diseases program. Key elements of an

effective program include the following:

(i) human disease surveillance

(ii) tick surveillance and testing

(iii) general public and healthcare provider outreach and

education regarding the prevalence and prevention of

Lyme disease.

Any reference to education in these recommendations should

emphasize the need to provide an open and balanced review of the

full body of literature.

Rationale:

Lyme disease is a significant health issue in Virginia, and VDH has

been working to track and prevent spread of this infection over the

last decade. As Lyme disease has become increasingly problematic

in Virginia during the last five years, surveillance and prevention

activities have become increasingly labor and resource intensive. A

strategic public health investment is necessary to enhance VDH’s

ability to prevent and control the spread of tick-borne diseases.

III

Specific Findings and Recommendations

In addition to these general observations, we make the following

specific findings and recommendations based on the testimony that

we received from our hearings:

A. Diagnosis

1. As acknowledged by the CDC, Lyme disease and many related

tick-borne illnesses cannot be adequately diagnosed by

serology alone in many cases.

2. There is no serological test that can “rule out” Lyme disease.

3. Clinical diagnosis that may be supported by serology remains

the proper method for the diagnosis of Lyme and related

illnesses.

4. Clinical diagnosis is not limited to the observation of an EM

rash. A significant proportion of patients with Lyme disease

may never develop or observe such a rash. Moreover, the EM

rash can manifest in non-traditional patterns. The medical

community needs a more comprehensive set of visual

illustrations so that non-traditional patterns may be properly

recognized.

5. Many lay witnesses testified that members of Virginia’s

medical community inaccurately believed that serology alone

can “rule out” Lyme disease.

6. According to lay testimony, there are some members of the

Virginia medical community who have refused to consider a

diagnosis of Lyme and related illnesses on the ground that

“we do not have Lyme in Virginia” or in this “part of Virginia.”

Lyme disease is present in all parts of Virginia, endemic in

most parts of the state, and emerging throughout the

Commonwealth.

7. The testimony that came before the Task Force relayed the

highly questionable nature of the ELISA test for early localized

disease. We encourage the use of clinical judgment at all

stages due to the significant limitations of current serology.

8. We recommend that the VDH reporting form include the

disclaimer “The CDC case definition is designed for

surveillance purposes only. Clinical judgment should be

exercised in assessing patients for Lyme disease as meeting

the surveillance case definition is not required for the

diagnosis of Lyme disease.”

9. Since ticks often carry multiple pathogens and we received

testimony that many Virginians have multiple tick-borne

illnesses that may require comprehensive analysis and

treatment, the medical community should be educated on the

presence of co-infections.

10. Great caution should be taken whenever a blacklegged tick is

attached and especially if it is engorged. Patient reports

about the length of time of attachment can be unreliable as

some patients may not have observed the exact moment of

attachment. Medical providers should be at their liberty to

treat Lyme disease prophylactically in such cases because of

the high risk of disease. (Note that single-dose prophylaxis

may lower the sensitivity of subsequent serology, as stated by

the CDC.) Moreover, it is clear that early treatment is very

important to prevent many serious complications of Lyme

disease.

11. The Task Force encourages increased financial support for

Internal Review Board-approved, peer-reviewed clinical

studies associated with Lyme disease diagnosis and

treatment. The Task Force encourages financial support for

Virginia’s college and university researchers who undertake

research on Lyme or tick-borne disease. This should include

all scientific realms. We commend Old Dominion University

for undertaking vital research in the Tidewater region.

(Rationale: Additional research that investigates the validity

and reliability of diagnostic and preventative tools and

provides guidance for appropriate treatment will support

quality of care and patient outcomes.)

12. The Task Force encourages institutions offering graduate-level

medical degrees to offer comprehensive instruction about

Lyme and other tick-borne diseases. Due to the rapidly

evolving nature of the scientific research and literature on

tick-borne disease, medical educators should use due

diligence to teach comprehensive and up-to-date information

in all aspects of tick-borne disease. (Rationale: Student

clinicians (medical, nurse practitioner and physician’s

assistant students) are the clinicians of the future and should

be aware of Lyme and other tick-borne diseases as medical

conditions in Virginia.)

13. VDH should continue to provide information to clinicians

practicing in the Commonwealth concerning the epidemiology

of Lyme disease in Virginia, a physician’s responsibility to

report Lyme disease, the information VDH requires to classify

a case, the purpose of the surveillance case definition, Lyme

disease prevention measures and tick identification. VDH

should also continue to provide information to clinicians

practicing in the Commonwealth about other tick-borne

diseases in Virginia. (Rationale: This recommendation

articulates VDH’s current practice and speaks to its

commitment to continue these informational efforts in regard

to tick-borne disease, with a particular focus on Lyme disease

as it is the most commonly reported tick-borne disease and is

present in all parts of Virginia, endemic in most parts of the

state and emerging throughout the Commonwealth.) VDH

should emphasize that due to the rapidly evolving nature of

the scientific research and literature on Lyme and tick-borne

disease, medical professionals should use due diligence to

stay abreast of information in all aspects of tick-borne disease

to educate their ability to clinically assess patients.

B. Treatment

1. There is no serological test that can tell a medical provider

when a patient has been cured of Lyme disease.

2. A typical criterion that a patient is well is when the symptoms

have resolved and the patient feels better.

3. There is no scientific basis for concluding that 30 days or less

of antibiotics is sufficient treatment for every case of Lyme

disease.

4. We received substantial testimony from lay witnesses that they

had been successfully treated with long-term antibiotics.

5. Expert testimony regarding effectiveness of long-term

antibiotics conflicted. We encourage additional studies to

evaluate the effectiveness of long-term antibiotics as treatment

for Lyme disease.

6. The Department of Health Professions should inform its

licensees that the department does not target clinicians for

disciplinary action by virtue of their antibiotic choice of

management of Lyme disease.

7. Lay witnesses expressed displeasure with the propensity of the

medical community to treat persons who were ultimately

diagnosed as late stage Lyme disease, to need psychological

evaluation or treatment. Lay witnesses testified this was often

done in a demeaning fashion and appeared as an excuse for

the medical community’s failure to adequately understand the

problem of Lyme disease.

8. Lay witnesses stated that long term treatment of Lyme disease

is often not covered by their insurance carriers and that they

can spend thousands of dollars per month for their treatment

plan. The extent to which this is occurring is unknown to the

Task Force and the Task Force recommends that this issue be

evaluated by the Bureau of Insurance.

C. Public Education and Prevention

1. It is a public health goal of a high magnitude to ensure that

the general public and medical community become fully aware

of the risk of exposure to Lyme and related illnesses and the

severe medical consequences that can arise when this disease

is not promptly diagnosed and treated. Developing an

appropriate sense of public urgency is the greatest single need

in the efforts to prevent and treat Lyme disease. The Governor

and VDH should expand their current programs of public

education to place significant and regular emphasis on Lyme

disease so that the public understanding is proportional to the

serious nature of this threat to public health.

2. Since ticks often carry multiple pathogens and we received

testimony that many Virginians have multiple tick-borne

illnesses that may require comprehensive analysis and

treatment, the public should be educated on the presence of

co-infections.

3. The VDH and other appropriate state and local agencies

should place greater emphasis on public education through

modern media. In addition to printed brochures, public

interest radio and television ads should be developed. The use

of the internet should be dramatically amplified. Major

internet information organizations—especially those

headquartered in Virginia—should be asked to consider

donating space for articles and announcements. An increased

effort to work with the journalists of Virginia to develop

appropriate stories to alert the public should be considered.

For example, Old Dominion University scientists presented

their unanticipated discovery of two additional tick species in

Tidewater some of which carried an infection that is a cousin

of Rocky Mountain Spotted Fever. This example demonstrates

the imperative for better communications on all fronts.

Budgets appropriate for these purposes should be developed.

4. It is essential that the Virginia approach to Lyme disease

prevention and treatment involve collaborative work of all

branches of state government and coordination with all facets

of local government. The Governor should consider convening

a task force of state and local officials to create a best-

practices model for government within the Commonwealth.

For example, it is imperative that public schools and

departments of parks and recreation consult with public

health officials to properly manage facilities to prevent

unnecessary public exposure to ticks—especially for

children—and that warning signs be posted at points of public

access in areas that are high-risk.

5. As a part of the efforts to inform the public about safe

practices (e.g. how to keep your yard free from ticks), the

Commonwealth should clearly communicate the expectation

that government agencies actually implement the same

methods being recommended to the public. For example, if a

public school sends a tick prevention brochure home with a

student, but does not actually implement the recommended

practices on school property, there are two dangers that arise.

First, children are unnecessarily exposed to ticks while at

school. Second, the failure of the school to implement the

practices signals to the parents that the situation is not truly

important. Government must practice what it preaches if the

public is going to give Lyme disease prevention the serious

attention it deserves.

6. The General Assembly may wish to consider amending the

Code of Virginia in order to authorize localities to establish tick

surveillance and control districts. (Rationale: Localities are

already authorized by the Code to establish mosquito control

districts. Providing a mechanism whereby localities could

form tick surveillance and control districts could be beneficial

to many localities, particularly in Lyme endemic and emerging

areas, by allowing the development of practices and policies

designed to decrease tick populations on locality property

frequented by the general public such as public parks and

schools.)

7. The Governor should establish a working group, under the

auspices of the Secretary for Natural Resources in

collaboration with the Secretary of Health and Human

Resources, to develop guidance and potential strategies for

localities that wish to attempt deer and/or tick population

control. The Governor should include funding in the 2012

Budget Bill that is sufficient to adequately support this

initiative. (Rationale: Developing guidance in this manner will

allow for the development of control strategies that are more

comprehensive than either Secretariat currently offers in

regard to Lyme and other tick-borne diseases.)

8. Public education programs on Lyme prevention should

continue to emphasize these (and other) important practices:

Land-use practices for preventing tick exposure:

• Animal exclusion and landscaping

Homeowners should consider fencing and landscaping choices that

tend to exclude deer (the primary adult tick host) and mice (the

Lyme bacterium reservoir). Do not plant vegetation that attracts

deer, remove food and cover that attracts mice (e.g. wood piles

trash), and reduce tick breeding grounds (e.g. clear trees and brush

and regularly mow grass). Homeowner associations and other real

estate contracts should avoid clauses that restrict the ability of

homeowners to effectively exclude deer from their property or

control deer populations in their neighborhoods.

• Tick control

Local, state, and federal agencies should continue to evaluate the

utility of host-specific application of acaricides (e.g., USDA 4-poster

devices) to combat Lyme disease in this Commonwealth. If their use

is warranted, the Virginia Department of Game and Inland Fisheries

(DGIF) should put in place an orderly and responsible permitting

process. DGIF is working with localities to investigate if this tool is a

practical solution for managing tick populations. Currently, DGIF

is working with Fairfax County on such a study and will develop

potential permit conditions that will safeguard wildlife populations

and habitats while not inhibiting the use of the 4-poster system.

Current regulations and codes exist to allow for the supervised use

of these devices. DGIF should work with VDH and local

governments to make sure that proper safeguards are put in place

and necessary data is collected on the use of these devices. Budget

for tick testing should be considered by the General Assembly.

• Deer Control

DGIF is to be commended for its appropriate expansion of hunting

seasons and limits for deer. Further expansions should be

considered. Public information campaigns should be conducted to

encourage all willing Virginians to participate in an effort to achieve

appropriate deer populations for the sake of public health.

• Acaricides

Public information about the safe and appropriate use of acaricides

should be a component of public education efforts.

Human practices to limit exposure to ticks:

• Avoiding tick habitat

The public needs to be informed about the nature of tick habitat

and the danger of entering into such habitat unprepared.

• Appropriate dress and/or repellants (especially in tick

habitats)

When entering such habitat is necessary, the public needs to be

informed about best practices to avoid tick exposure (proper dress,

repellants, tick checks, etc.)

• Showering after being outdoors

The public needs to be informed of the value of a thorough shower

within a short time after concluding outdoor activities where tick

exposure has been possible.

• Evening tick check

The public should be informed of the necessity of a once-a-day

thorough tick check after being outdoors (especially in tick habitat).

Children especially should be checked daily.

• Proper pet practices

Vaccination and repellants for pets should be strongly encouraged.

The public should be aware that even though pets have been

properly treated, they can still bring ticks into the home that leave

the pet and bite a human. Accordingly, indoor pets should be

controlled to avoid entry into tick habitat.

D. Children

1. One expert testified concerning a potential for in utero

transmission of Lyme disease. The CDC has proclaimed on its

website, “Untreated, Lyme disease can be dangerous to your

unborn child.”1 VDH should include information for pregnant

women in the educational materials that it provides to the

general public and to healthcare providers who care for

pregnant women.

2. VDH should inform the public of the fact that children are a

high-risk group for contracting Lyme disease. Parents need to

be alert to the possibility of Lyme—especially when a child

presents with symptoms that are not easily categorized as

some other illness with an identified etiology.

3. VDH needs to undertake focused campaigns to help educate

pediatricians, family practitioners, urgent care clinicians, and

other clinicians about the importance of early recognition of

Lyme disease.

4. VDH, the Virginia Department of Education, other agencies,

and subject matter experts as appropriate should collaborate

to create a best practices document focused on children with

Lyme and related illnesses. Topics that should be considered

include:

• Proper construction of school grounds to promote deer

exclusion and avoid unnecessary exposure to ticks

• Before taking students outdoors for instructional field

investigations, consideration of the site’s likelihood for ticks

and then, in cooperation with parents, preparation of the

students, parents, and teachers accordingly with the

following simple guidelines: wear appropriate clothing, use

repellents and perform thorough tick checks. (The benefits

of outdoor recreation and education is very important for

our children’s development and complete avoidance of tick

habitat would be extremely difficult.)

• Proper landscaping and fencing practices to limit the ability

of children to enter tick habitat during the school day

• Consideration of safe and effective use of acaricides

• Education of teachers, school psychologists, school

counselors, school nurses, and other professionals in all

phases of Lyme disease, but especially in the relationship

between Lyme and neurological impairment that may

present as learning-related or sudden-onset attention or

memory difficulties.

5. VDH should continue to provide information to school nurses

in the Commonwealth about Lyme and other tick-borne

diseases in Virginia. (Rationale: This recommendation

articulates VDH’s current practice and speaks to its

commitment to continue these critical informational efforts.)

6. Experts testified that students afflicted with this disease often

fall significantly behind in school because of the problems that

they face, not the least of which are cognitive difficulties.

Current educational accommodations are often inadequate.

Consideration should be given to appropriate and sensitive

educational modifications for students with late-stage Lyme

that help maximize their educational progress and that

emphasize the fact that late-stage Lyme disease routinely has

waxing and waning symptoms not typical in most chronic

medical conditions and that may require novel and timely

accommodations and interventions.

7. VDH should continue collaboration with Virginia’s Department

of Education (DOE), the Virginia Council for Private Education

and home schooling associations to explore developing

materials that may be incorporated into the science and/or

health education curricula of elementary, middle and high

school students in the Commonwealth concerning the

epidemiology of Lyme and other tick-borne diseases in

Virginia, tick-borne disease prevention methods and tick

identification. (Rationale: Educating children about Lyme and

other tick-borne diseases is best done by presenting this

information as part of a school program. A comprehensive

approach to educating elementary, middle and high school

students about Lyme and other tick-borne diseases can only

be achieved through a coordinated effort with the

organizations that develop these academic programs for

students in Virginia.)

Respectfully submitted,

Michael Farris

Chairman

Link here:

http://wolf.house.gov/uploads/Report_of_the_Virginia_Task_Force_on_Lyme_Disease_Final.pdf