State Report on Lyme Disease

From Nancy Schiemer of the Lyme Disease Study Committee –

Commonwealth of Massachusetts
Lyme Disease in
A Report Issued by the Special Commission
to Conduct an Investigation and Study of the
Incidence and Impacts of Lyme Disease

February 28th 2013
Members of the Commission
Commissioner of the Department of Public Health . . Dr. Catherine M. Brown (Designee)
Commissioner of the Division of Health Care Finance & Policy . Ms. Jen Gorke (Designee)
Director of the State Laboratory Institute. . . . Dr. Linda Han (until 9/13/2012)
House 1 . . . . . . . Representative David P. Linsky
House 2 . . . . . . . Representative Carolyn Dykema
House Minority Leader’s Appointment . . . . Representative Bradford R. Hill
Infectious Disease Specialist . . . . . Dr. Sam T. Donta
International Lyme and Associated Disease Society . . Dr. Sheila Statlender
Local Board of Health 1 . . . . . . Dr. Louis E. Fazen
Local Board of Health 2. . . . . . Ms. Joanne Martel, RN
Local Board of Health 3 . . . . . . Dr. Barbara Roth-Schechter
Lyme and Other Tick-Borne Diseases Organization 1 . . Ms. Patricia McCleary
Lyme and Other Tick-Borne Diseases Organization 2 . . Ms. Brenda J. Boleyn
Public 1 (Patient or Family Member of Patient) – Senate . . Ms. Kristen Alexander
Public 2 (Patient or Family Member of Patient) – House . . Ms. Lisa Donahue
Senate 1 . . . . . . . Senator Susan Fargo
Senate 2 . . . . . . . Senator Daniel A. Wolf
Senate Minority Leader’s Appointment . . . . Senator Richard J. Ross
State Epidemiologist . . . . . . Dr. Alfred DeMaria Jr.
Treatment or Research of Lyme Disease Expert 1 . . Dr. Sam Rountree Telford III
Treatment or Research of Lyme Disease Expert 2 . . Dr. Thomas N. Mather
Massachusetts House Post Audit and Oversight Committee Staff
Katelyn Kelly

EXECUTIVE SUMMARY . . . . . . . . 1
GLOSSARY OF TERMS . . . . . . . . 3
Massachusetts State Surveillance and Reporting . . . . . 7
Massachusetts Department of Public Health Lyme Disease Surveillance Activities . 7
Other Statewide Lyme Disease Surveillance Activities . . . . 7
Potential Benefits of Enhancing Lyme Disease Surveillance . . . . 9
Potential Activities for Enhancing Surveillance of Lyme Disease in Massachusetts . 10
Education and Awareness . . . . . . . . 13
Education for Prevention . . . . . . . . 13
Education for the Medical Community . . . . . . 15
Co-infections . . . . . . . . . 17
Critical Need for More Research . . . . . . . 17
Partnerships . . . . . . . . . 18
Implementation Advisory Committee . . . . . . 18
True Costs of Lyme Disease in Massachusetts . . . . . 18
Insurance and Liability . . . . . . . . 19
Prevention . . . . . . . . . . 24
Vaccination . . . . . . . . . 25
Environmental Interventions . . . . . . . 25
Education . . . . . . . . . 30
Funding . . . . . . . . . . 32
REFERENCES . . . . . . . . . 34

In accordance with Section 181 of Chapter 68 of the Acts of 2011, the Commonwealth of
Massachusetts established the Special Commission to Conduct an Investigation and Study the
Incidence and Impact of Lyme Disease. The twenty-one member Commission was comprised of
individuals from a wide variety of backgrounds and was put in place in order to provide the most
comprehensive overview and insight into the various issues that surround this disease. The
members ranged from state legislators and state agency representatives to experts in treatment
and research to members of the public and Lyme disease activists. Upon the formation of the
Commission the members broke into five sub-commissions; State Surveillance and Reporting,
Education and Awareness, Funding, Prevention, and Insurance and Liability Issues in order to
address all tasks issued to the Commission under the Massachusetts General Acts of 2011. The
sub-commissions met on a regular basis and the full Commission came together once a month to
discuss each group’s findings. The following is a compilation of each sub-commission’s report
and it presents an overview of the Commission’s findings and recommendations for the state to
enact and enforce in order to ensure that the Lyme disease epidemic is controlled and that future
infections can be prevented.
The Commission discovered that the current state laboratory reporting is an obvious
strength for statewide surveillance in helping to gain a better idea of trends across the
Commonwealth. However, it fails to capture reports of Lyme disease for which laboratory
testing is not routinely reported or is not performed at the appropriate stage of the disease. The
Commission believes in the importance of enhancing current Lyme disease surveillance methods
in order to better determine disease burden, geographic distribution, risk groups, clinical features,
and changes in epidemiology over time, which then can be translated into data to assist the
Massachusetts Department of Public Health (MDPH) in targeting high-risk areas. The
recommendations of the Commission include evaluating the current laboratory-reporting
practices in order to gather more pertinent information surrounding the disease by updating the
current forms, as well as updating the reporting systems to an electronic format in order to
provide more easily presented and accessible data. Having school nurses provide surveillance
information regarding students would be another useful tool in surveillance. An all-payer claims
database analysis would also help determine the costs associated with the treatment of this
disease. Improved laboratory diagnostic methods are necessary in ensuring accurate diagnosis
and therefore that accurate treatment plans are being prescribed and seroconversion studies might
help identify whether the quality and completeness of surveillance data is proportional to the
amount of resources invested in the collection of data.
The most important focus of the Commission is the education and awareness of Lyme
disease. Educating the public for prevention is the key aspect in helping to prevent transmission
and therefore avoiding many of the difficulties that can arise for patients following infection. The
Commission recommends that appropriate knowledge, attitudes, and practices (KAP) surveys are
developed in order to establish a basis for targeting education and for the development of an
engaging and educational health promotion campaign to be distributed in communities. State
funding and advertisement subsidies should be provided to towns for tick bite protection and
tick-borne disease (TBD) prevention promotions. Recommendations for education of the medical
community include that healthcare providers be apprised of the spectrum of Lyme disease
(especially regarding relapsing or persisting symptoms), be made aware that currently published
recommendations and guidelines regarding treatment of Lyme disease are based on limited data,

that recommendations regarding antibiotic treatment of patients with persisting or relapsing
symptoms are based primarily on the results of one clinical trial, and remind physicians of the
Physician Protection Act; Section 12DD of Chapter 112 of the Massachusetts General Laws,
which protects doctors from facing disciplinary action should they choose to diagnose and treat
according to clinical criteria.
In order to educate physicians and other healthcare providers the Commission
recommends that this report be sent to each provider from provider-enrolled organizations, the
report be disseminated in medical publications and be accessible online. There should also be
support for professional educational forums across the state. It is also recommended that MDPH
communicate the limitations of laboratory testing to healthcare providers in Massachusetts and
regularly review its educational materials relative to new information pertaining to Lyme
disease. Although there is general agreement that published guidelines have never been intended
to replace clinical judgment, the differences in approach to treatments have led to a continuing
controversy that has significantly impacted the delivery of care for Lyme patients in
Massachusetts. This controversy underscores the compelling need for serious national
investments in scientific research directed at diagnosis and treatment options; both better Lyme
diagnostics through testing that is not dependent upon the production of antibodies and more
clinical research relative to treatment protocols. Establishing partnerships between local boards
of health and community spaces is important in ensuring the distribution of this material. The
implementation of an advisory committee is also essential in fulfilling these recommendations.
While the Physician Protection Act protects physicians from liability, it is not a guarantee
of treatment. Therefore, mandatory Lyme disease insurance coverage needs to be enacted in
Massachusetts. The Commission also recommends that a mechanism be devised to oversee
potential violations of the insurance mandate, should it be adopted, and to investigate reports of
potential discrimination against patients with Lyme disease.
In addition to education, other modes of prevention can provide protection from
infection. The Commission believes that the Pesticide Bureau should add specific tick-relevant
training though the pesticide licensing exam materials; look into spraying to control ticks;
implement a study to be conducted the State Reclamation Board to determine what extra funds
would be needed for each mosquito control district to expand the scope of their work to include
tick control measures; have the Department of Conservation and Recreation examine options for
reducing tick habitat; conduct a study to determine how to ensure compliance for tick control on
school properties; have MassWildlife study the costs and benefits of expanded access to
crossbow hunting; and have the Massachusetts Division of Fish and Wildlife explore the costs
and benefits of changing the archery safety zone to 150 feet of an inhabited dwelling to allow
greater access to sites for deer management.
The Commission recommends that state provide funding to provide the public and
medical community the most up-to-date materials regarding prevention, as well as diagnostic
tools and treatment practices and that the Commonwealth support state and federal funding for
tick-borne disease research.
It is important to note that the Commission members participated as individuals, and as
such, have voted to move the aforementioned recommendations forward. However, their
identification as Commission members does not imply full endorsement of all recommendations
or the official positions of agencies or organizations for which they work.


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