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                              Tick-Borne Disease Working Group Virtual Meeting 22 Summary - Day 1


    

    

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Tick-Borne Disease Working Group Virtual Meeting 22 Summary - Day 1








  
  
    

  
      





July 19th, 2022

*Note: For context and clarity, speaker credentials will be included upon first mention in each meeting’s summary. Subsequently, individuals will be referenced by their first names to equalize expertise across the many diverse disciplines represented in this document. All perspectives and expertise, including patient-lived experience, is valued equally. Speaking on a first-name basis helps the Tick-Borne Disease Working Group ensure that all voices are heard and valued based on merit and without the bias of titles, eminence, or prestige.*

Welcome and Roll Call: Day 1

*James (Jim) Berger, MS, MT (ASCP), SBB, Senior Blood and Tissue Policy Advisor, Office of Infectious Disease and HIV/AIDS Policy, Office of the Assistant Secretary for Health, U.S. Department of Health and Human Services (HHS); Designated Federal Officer for the Tick-Borne Disease Working Group, called the meeting to order and conducted the roll call (see Appendix 1: Tick-Borne Disease Working Group Members and HHS Support Staff). The meeting began with a quorum.*

Recap of Meeting 21 and Meeting 22 Goals

Linden Hu, MD, Tufts University School of Medicine, Professor Microbiology and Medicine; Vice Dean for Research; Working Group Co-Chair, presented a recap of Meeting 21. The agenda for that meeting was as follows:

Public Comments
	LymeX Update
	Acceptance of Subcommittee Reports
	Discussion and Vote on Subcommittee Recommendations
	Diagnostics
		Changing Dynamics of Tick Ecology, Personal Protection, and Control
		Disease Prevention and Treatment
		Access to Care and Education
		Clinical Presentation and Pathogenesis
	Federal Inventory Update
	Review of Report to Congress Outline
	Division oof Report Writing Duties
	Update on Graphics for ReportLinden presented the objectives for Meeting 22, which include discussing draft chapters, reviewing graphic design options, designating writers to unassigned chapters, and reviewing next steps in the report preparation process. Linden presented the agenda for Day 1 of the July meeting, which was as follows:

Federal Inventory Update
	Remarks by ADM Levine, MD, Assistant Secretary for Health
	Public Comments
	Review and Discussion of Report Chapters
	Clinical Presentation and Pathogenesis
		Diagnostics
		Tick Ecology, Personal Protection, and Control
	Discussion of Unresolved Issues.2022 Federal Inventory Update

Meghan Walsh, PhD, Senior Associate, Center for Scientific Research, Rose Li & Associates, Inc., presented an update on the Federal Inventory, including preliminary results of the additional 2022 survey components.

***Objectives***

The objectives of the 2022 Federal Inventory are:

Expand the breadth and depth of the Federal Inventory to include additional survey components and a review of literature.
	Quantify tick-borne disease (TBD) programs, activities, and funding at the federal and state levels, and at relevant private organizations.
	Identify advances, overlaps, and gaps in TBD research in the United States.
	Provide a companion report to the Tick-Borne Disease Working Group Report to Congress concerning progress across the national TBD landscape.The inventory report will be a companion document to the 2022 Report to Congress to inform the Secretary of HHS and Congress regarding existing gaps within the TBD landscape.

***Development Phase***

Several components were added to the 2022 Federal Inventory, which include:

Redevelopment of the federal agency survey to align with Working Group subcommittee themes.
	Development of surveys for states and private organizations.
	These surveys were developed to adhere to the 2022 Tick-Borne Disease Working Group Subcommittee priority findings.
	Creation of a pilot feasibility study to collect Centers for Medicare and Medicaid (CMS) TBD data and reimbursement costs of Medicare claims.
	This study was formulated in response to the recommendations in the 2020 report.
	Construction of scoping review framework of published and unpublished literature to assess the current state of TBD research.***Federal Agency Surveys***

Agencies were selected based on their participation in surveys during the 2018 and 2020 cycles. These include:

Centers for Medicare & Medicaid Services (CMS)
	Centers for Disease Control and Prevention (CDC)
	National Institutes of Health (NIH)
	U.S. Food and Drug Administration (FDA)
	U.S. Department of Defense (DoD)
	U.S. Department of Agriculture (USDA)
	U.S. Department of Veterans Affairs (VA)Meghan noted that the federal agency survey aligns with themes from the 2022 Tick-Borne Disease Working Group Subcommittee reports. These seven agencies received memos from the Office of the Assistant Secretary for Health (OASH) requesting survey participation, as well as reminders and follow-ups. The new federal agency survey completion deadline is July 21. At the time of this meeting, DoD and FDA had responded to these requests.

***State Surveys***

Individual Working Group members and CDC staff were consulted to identify states for inclusion in the survey based on high incidence of TBDs. Appropriate points of contact and state health department leads were invited to participate and sent reminders and follow-ups. These states include:

Connecticut
	Indiana
	Maine
	New Jersey
	New York
	Pennsylvania
	Vermont
	West Virginia
	WisconsinMeghan noted a participation rate of 89 percent with eight out of nine states submitting results. The final deadline for survey completion was July 15. This information will be supplemented with data from additional state information sources, including CDC state data, state reports, and National Association of County and City Health Officials (NACCHO) vector-borne assessment survey data.

***Private Entity Surveys***

The goal of the private entity survey is to capture levels of funding and collaborative initiatives. Several actions have been completed since the April 2022 Working Group meeting, including:

Identification of relevant private organizations that provide funding for TBD research and/or programs.
	Determination of participants based on Working Group guidance.
	Tailoring of the survey to collect data from private organizations.
	Administration of the survey online via Survey Monkey.The following organizations were surveyed with an 86 percent response rate.

Bay Area Lyme Foundation
	Cohen Foundation
	Global Lyme Alliance
	LivLyme Foundation
	Lyme Disease Association
	Lyme X
	Project LymeMeghan provided some preliminary findings from the private entity surveys. She noted that respondents identified priority areas for TBD research including diagnostics, education, access to care, disease prevention, and tick ecology. Organizations did not plan to expand funding for research on disease pathogenesis, clinical presentation, or personal protection. Four of six private organizations reported funding levels from 2018-2022, and these four organizations all reported increases in funding for 2020 and decreases for 2021. All respondents reported support of 1-9 employees with funds budgeted for addressing TBDs. Based on budget allocation data provided, on average the highest funded area was access to care (86 percent) and the lowest was clinical presentation and pathogenesis (29 percent). According to the survey results, funding for advocating for high-risk categories of people allocated the most resources to addressing disease transmission in children, and the least in animal health professionals.

***Centers for Medicare and Medicaid Pilot***

The 2020 Tick-Borne Disease Working Group Report Recommendation 9.6 stipulated that CMS provide all information on Lyme disease and other tick-borne diseases and all applicable agency activities pertaining to these conditions:

Reimbursement costs for the diagnosis and treatment of beneficiaries with Lyme disease and other TBDs.
	Demonstration and pilot projects focused on Lyme disease and other TBDs.
	Quality measure development and implementation related to Lyme disease and other TBDs.As a result of these recommendations, Meghan’s team constructed a pilot feasibility study to collect this data. These activities included reviewing relevant literature and seeking advice from subject matter experts (SMEs) at CDC and CMS to determine a pilot design and confirm codes to request datasets from relevant organizations. These dataset requests include:

ICD 9 and 10 codes related to TBDs and conditions in 2018
	Common treatments and related symptoms
	Medicare reimbursements data
	Demographic information***Literature Review***

Meghan’s team is also conducting a rapid scoping review of the literature in TBD research to determine where gaps exist and help inform other Federal Inventory components. Methods for the literature review are based on the Arksey and O’Malley scoping review framework (2005), in order to provide an overview of the current landscape of published and unpublished literature concerning TBDs and illnesses in the United States since 2018.

Meghan noted that the review will include the basic, clinical, and translational research from January 1, 2018 through June 30, 2022 on topics including etiology, prevention, treatment, surveillance, diagnostics, duration of illness, pathogenesis, and access to care. Inclusion criteria will include all tick-borne diseases and conditions in human studies within the United States. Of 5,128 identified records, Meghan’s team will assess 632 full-text articles.

***Federal Inventory Review Timeline***

Meghan presented a timeline of relevant dates for completion of the inventory to coincide with the Working Group’s report submission.

April 1st – May 15th: Project Development
	May 16th – July 15th: Data Collection
	July 16th – September 20th: Final data collection, analysis, report writing, and finalization
	September 21st: Federal Inventory Report Submission***Discussion***

Jennifer Platt, DrPH, Co-founder, Tick-borne Conditions, inquired about the selection process for state surveys, which did not include southern states. Meghan noted that resources were only available for nine state surveys, but regional data will be used to bolster the results. Gabriella (Gaby) Zollner (Romero), PhD, Program Manager, Deployed Warfighter Protection Program, U.S. Department of Defense, asked if tick ecology and prevention would be excluded from the literature review, since the review only involves human studies. Meghan noted that studies in these areas will be included, provided they are not animal studies. Elizabeth (Betty) Maloney, MD, President, Partnership for Tick-borne Diseases Education, asked whether studies outside the United States would be included in the literature review. Meghan noted that papers containing data about the United States will be included regardless of publication location.  Betty also noted that lymedisease.org was also likely surveyed, and Meghan planned to investigate whether lymedisease.org representatives responded to the survey.

Remarks by ADM Rachel Levine, MD, Assistant Secretary for Health

ADM Rachel Levine, MD, Senior Associate, Assistant Secretary for Health, provided opening remarks for the Working Group’s 22nd meeting. ADM Levine expressed gratitude for the Working Group’s work and dedication to their challenging mission. She recognized that there are differing opinions about tick-borne diseases and looked forward to the final report. ADM Levine underlined the importance of studying tick-borne diseases, noting that ticks carry more zoonotic pathogens than any other vector. She highlighted that the incidence of tick-borne diseases more than doubled between 2004 and 2016 and that climate change is contributing to the spread of zoonotic diseases including those transmitted by ticks.

She was first exposed to the challenges of addressing tick-borne diseases as the Pennsylvania Secretary of Health. She noted that there are important lessons to be learned from this experience: Public health measures need to be collaborative across agencies and organizations and rely on expertise from many different fields. ADM Levine reflected on her experience working with the tick surveillance program in Pennsylvania and underscored the importance of modeling this collaborative work on a national scale.

She observed that ticks also affect animal populations, including moose, elk, caribou, deer, horses, dogs, and cats. She cited one study that found that 70 percent of black bears carry Powassan virus, which can spread during long-distance migrations. ADM Levine advocated for more studies of animals and how animal reservoirs can spread disease to people.

She lamented the tragic death of North Carolina Senator Kay Hagan, who passed away from complications of Powassan virus. Her passing led to centers of excellence to study the disease and prompted the development of the upcoming Vector-Borne Disease National Strategy. ADM Levine stressed the One Health approach to studying tick-borne diseases, which recognizes the environment in which zoonotic disease transmission occurs.

In closing, ADM Levine thanked the Working Group and underscored the need for actionable recommendations in their upcoming report to Congress and to HHS Secretary Becerra. She highlighted the importance of including the voices of those who have been afflicted by tick-borne disease in order to impress upon readers the pressing need to continue this work.

Overview of the Working Group’s Mission Statement, Vision Statement, and Values

Jim reviewed the Working Group’s Mission Statement, as follows:

The Tick-Borne Disease Working Group’s mission, as mandated through the 21st Century Cures Act, is to provide expertise and to review all efforts within the Department of Health and Human Services related to all tick-borne diseases, to help ensure inter-agency coordination and minimize overlap, and to examine research priorities. As part of this mandate, and in order to provide expertise, we will ensure that the membership of the Working Group represents a diversity of scientific disciplines and views and is comprised of both Federal and non-Federal representatives, including patients, and family members or caregivers, advocates of non-profit organizations in the interest of the patient with tick-borne illness, scientists, and researchers. A major responsibility of our mission will be to develop and regularly update the action of HHS from the past, present, and the future.

Jim then reviewed the Working Group’s Vision Statement, as follows:

**SHARED VISION:** A nation free of tick-borne diseases where new infections are prevented, and patients have access to affordable care that restores health.

Finally, Jim gave an overview of the Working Group’s Core Values, the complete versions of which are provided below.

**RESPECT: Everyone is valued**

We respect all people, treating them and their diverse experiences and perspectives with dignity, courtesy, and openness, and ask only that those we encounter in this mission return the same favor to us. Differing viewpoints are encouraged, always, with the underlying assumption that inclusivity and diversity of minority views will only strengthen and improve the quality of our collective efforts in the long term.

**INNOVATION: Shifting the paradigm, finding a better way**

We strive to have an open mind and think out of the box. We keep what works and change what doesn’t. We will transform outdated paradigms, when necessary, in order to improve the health and quality of life of every American.

**HONESTY and INTEGRITY: Find the truth, tell the truth**

We are honest, civil, and ethical in our conduct, speech, and interactions with our colleagues and collaborators. We expect our people to be humble, but not reticent, and to question the status quo whenever the data and the evidence support such questions, to not manipulate facts and data to a particular end or agenda, and to acknowledge and speak the truth where we find it.

**EXCELLENCE: Quality, real-world evidence underlies decision-making**

We seek out rigorous, evidence-based, data-driven, and human-centered insights and innovations—including physician and patient experiences—that we believe are essential for scientific and medical breakthroughs. We foster an environment of excellence that strives to achieve the highest ethical and professional standards, and which values the development of everyone’s skills, knowledge, and experience.

**COMPASSION: Finding solutions to relieve suffering**

We listen carefully with compassion and an open heart in order to find solutions which relieve the suffering of others. We promise to work tirelessly to serve the greater good until that goal is achieved.

**COLLABORATION: Work with citizens and patients as partners**

The best results and outcomes won’t be created behind closed doors but will be co-created in the open with input of the American public working together with these core values as our guide. We actively listen to the patient experiences shared with us, respect the lived experiences of patients and their advocates, and learn from their experiences in our pursuit of objective truth. Across diverse audiences, we communicate effectively and collaborate extensively to identify shared goals and leverage resources for maximum public health impact.

**ACCOUNTABILITY: The buck stops here**

We, as diligent stewards of the public trust and the funds provided by our fellow citizens, pledge to be transparent in all of our proceedings and to honor our commitments to ourselves and others, while taking full responsibility for our actions in service to American people.

***Objectives***

Jim reviewed the Working Group’s objectives, which are to provide expertise and review all efforts within HHS related to all tick-borne diseases, to help ensure interagency coordination and minimize overlap, and to examine research priorities. He outlined the Working Group’s duties, as follows:

No later than two years after the date of enactment of the authorizing legislation, review a summary of:
	Ongoing tick-borne disease research, including research related to causes, prevention, treatment, surveillance, diagnosis, diagnostics, duration of illness, and intervention;
		Advances made pursuant to such research;
		Federal activities related to tick-borne diseases, including (a) epidemiological activities related to tick-borne diseases and (b) basic, clinical, and translational tick-borne disease research related to the pathogenesis, prevention, diagnosis, and treatment of tick-borne diseases;
		Gaps in tick-borne disease research described in clause 3b;
		The Working Group’s meetings; and
		The comments received by the Working Group.
	Make recommendations to the Secretary regarding any appropriate changes or improvements to such activities and research.
	Solicit input from States, localities, and non-governmental entities, including organizations representing patients, health care providers, researchers, and industry regarding scientific advances, research questions, surveillance activities, and emerging strains and species of pathogenic organisms.Jim noted that the *21st Century Cures Act*will sunset six years after its enactment, in December 2022. He also noted that ADM Levine’s office requested to extend the Tick-Borne Disease Working Group, but no decision had been made at the time of this meeting.

Public Comments

Holiday Goodreau, Executive Director, LivLyme Foundation; Co-creator, TickTracker; Working Group Co-Chair, *welcomed public commenters and**reminded**the public**of the three ways to engage with the Working Group: (a) providing oral public comments at public meetings, (b) submitting written public comments for a public meeting by email**to*tickbornedisease@hhs.gov,*and (c) sending comments any time by email to*tickbornedisease@hhs.gov.

*Karl Studenroth*: Karl is an Airforce veteran and served for several years as park ranger in the United States Army Corps of Engineers (USACE). Karl also worked as a biologist for several agencies and has more than 14 years of federal service. Karl contracted Rocky Mountain spotted fever (RMSF) in the line of duty. It took two months to diagnose, leading to several health complications. Karl nearly lost his life in two separate emergency room visits and continues to experience ongoing neurological symptoms. Karl explained his difficulties obtaining health care and his fight to retain health benefits. He described himself as a whistleblower at USACE for not providing the proper care he requires.

*Alex Logg*: Alex reports a lifetime struggle with Lyme disease. She was bitten by a tick in her backyard in Bernardsville, NJ in 1997. Alex reported recurring symptoms and doctor visits throughout her childhood. In 2015, Alex was in a car accident and received a concussion, which she believes allowed Lyme disease to enter her brain. She described the following years as being bedridden and in severe pain. She credits her ability to function from an experimental treatment. Alex continues to experience cognitive impairments, memory loss, anxiety, and other neurological issues. Alex continues to struggle with accessing care and has difficulty finding doctors to treat her chronic symptoms. Alex advocated for more funding to develop early interventions for Lyme disease, education for clinicians, and improved diagnostics.

*Kathleen Wallace*: Kathleen has followed the Working Group since its inception. She emphasized the need for more research into multiple chemical sensitivity (MCS), a syndrome she believes is a gap in the study of tick-borne diseases. Kathleen provided a list of chemicals and symptoms, noting that individuals suffering from MCS lose access to public facilities. Kathleen advocated for research into this condition and more environmental accommodation. Kathleen described losing her home, her job, and family life due to MCS.

*Jamie Simoson*: Jamie spoke on behalf of her three-year-old son, Jonathan. He became ill after a tick bite. Jamie stated that the pediatrician dismissed the tick bite and Jonathan was not diagnosed with Powassan virus until weeks after his initial visit. Jonathan was subsequently hospitalized with a high fever and was incommunicative while suffering from encephalitis. Jamie is now seeking occupational and speech therapy to address the neurological damage her son experienced. She reported absence of support from her insurance company and pediatrician. Jonathan is unable to attend day care, which creates a burden for his family. Jamie advocated for increased education for clinicians, so they can respond early and properly to potential tick-borne diseases.

*Carl Tuttle*: Carl noted his comment was a follow-up to his written comment about the disabling stage of Lyme disease. Carl advocated for more research into maternal-fetal transmission. Carl cited several studies of potential treatments for Lyme disease. He commented that researchers studying antibiotics are harassed and ignored. Carl also expressed frustration about research focus on vaccines, rather than other treatments.

*Jeffrey Crater*: Jeffrey is a board member and founder of the Center for Lyme Action, a non-profit dedicated to advocating for Lyme disease patients. Jeffrey reported that he has two children with Lyme disease. He worked in politics in Washington, DC and believes structural change is needed to improve diagnostics, therapies, and cures for Lyme disease. The Center for Lyme Action published a Lyme Moonshot paper outlining the steps needed to improve care. Jeffery advocated for a national Lyme disease institute modeled after the National Cancer Institute (NCI) to address the numerous recommendations from the Working Group’s reports and other advocacy organizations. A center modeled after NCI could create a pipeline of young researchers to work on Lyme disease.

*Jonathan Meek*: Jonathan is a physician with both Lyme disease and babesiosis. He became ill after a camping trip in Somerset, New Jersey in 2016. With flu-like symptoms, he presented to his primary care physician, who doubted he had Lyme disease because there was no bull’s-eye rash. After worsening symptoms, Jonathan sought emergency care and different physicians suspected a *Babesia* infection. Jonathan went on to experience severe inflammatory conditions which continue to the present. As a healthcare worker, Jonathan understands the importance of education in changing the clinical understanding of chronic diseases. He is deeply concerned about the responses he has received from other physicians regarding his condition. Jonathan also expressed disappointment in the lack of diagnostic and treatment options.

*Felicia Chillak*: Felicia’s husband, Michael, contracted Powassan virus in 2020. Felicia stated that initially physicians minimized her insistence that he had a tick-borne disease, and it took four weeks for Michael to get a diagnosis. Michael and his family suffered greatly as he lost brain function. He is currently in a nursing facility. Felicia underscored the speed with which Powassan can be transmitted and noted the continued spread of ticks carrying the virus across the United States. She noted that those who develop encephalitis are at high risk for mortality or lifelong neurological problems. Felicia advocated that HHS raise awareness about Powassan virus, particularly in areas with high prevalence of tick-borne diseases. She also advocated that HHS collect biological samples with which to test therapeutics, such as steroids and intravenous immunoglobulin treatments, to prevent further damage to patients. Felicia stated HHS should educate providers and establish a central tick testing lab where samples can be sent for analysis.

*Monica White*: Monica is the president of Colorado Tick-Borne Disease Infections and has lived with Lyme disease for 16 years due to lack of early diagnosis and treatment. She is formerly a firefighter for the U.S. Forest Service but is only functional with a battery of antibiotics and other drugs. Monica says she experiences relapses, and after her latest hospital stay, she was dismissed by doctors who did not believe that her illness was due to tick-borne disease. Monica stated that her children contracted Lyme disease and co-infections congenitally, and both children experienced delays in diagnosis and treatment. Monica advocated for improved treatment for patients with persistent disease, stating that the lack of resources available is causing the health care system to fail these patients. She stressed that patients must be the focus of the Working Group in its final phase.

*Kristina Bauer*: Kristina commented that she has four children who contracted Lyme disease congenitally. As founder of Texas Lyme Alliance, she has been advocating for an update of pediatric care for tick-borne diseases but has not seen any progress. Kristina explained that she interacted with providers throughout her life who dismissed or misdiagnosed her tick-borne illness. Kristina has only been able to find relief through expensive integrative therapies. She highlighted the need for 90-day courses of antibiotics for persistent Lyme disease and complained that many patients are denied treatment. Kristina advocated for improved clinician education for Lyme disease and commended new electronic health record codes that note tick-borne disease in patient charts.

*Betty Gordon*: Betty explained that, after her husband Jack passed away in 2014, she sought brain autopsies, which revealed chronic Lyme disease and bartonellosis. Betty described her disappointment in being previously ignored by the research community; however, she noted that there are researchers currently studying her husband’s donated brain tissue. Betty also tested positive for both Lyme disease and *Bartonella*infection, which she says went misdiagnosed for decades. She expressed frustration at the lack of clinician education for tick-borne diseases and advocated for its improvement. She lauded the Working Group for engaging patient advocates as leaders in the group.

*Art Christiani*: Art reported being a corporate executive for 30 years in good physical condition, which changed rapidly after his Lyme disease diagnosis. Art stressed the importance of listening to patients, which he said is lacking in the provider community. Art stated that he was diagnosed with Lyme disease three times, with treatments of doxycycline the first two times; however, his diagnosis was delayed the third time, and he experienced neurological, physical, and emotional damage. Art commented that if he stopped taking antibiotics, he would experience debilitating symptoms that prevent him from working. He added that he has been in car accidents due to seizures from his illness. Art also complained of the lack of insurance coverage to treat chronic Lyme disease due to insufficient provider education. He advocated for rapid prescription of doxycycline for patients and new tests for immunocompromised patients to remove barriers to treatment.

Vote on Rewording of Chapter Recommendations

Linden informed the Working Group that a vote was scheduled to allow changes to recommendations in two chapters: Access to Care and Education, and Changing Dynamics of Tick Ecology, Personal Protection, and Control. Since the previous Working Group meeting, issues had arisen that required changes to particular recommendations in these chapters, which will be discussed in more detail during chapter discussions. The Working Group agreed to hold a single vote allowing changes in recommendations for both chapters.

***Vote***

Twelve members voted yes to allow changes in recommendations for the Access to Care and Education Chapter and Changing Dynamics of Tick Ecology, Personal Protection and Control Chapter. The motion passed.

Clinical Presentation and Pathogenesis Chapter Review

Linden opened the discussion of individual chapters and member feedback by explaining that each member would explain their comment in the manuscript, as well as any recommended revisions. Chapter authors would then have an opportunity to respond. Subsequently, Working Group members would be able to discuss each comment. Cat Thomson, RLA contractor, was present to display chapter manuscript and member comments on screen and record Working Group decisions made to address each comment.

**Comment 1 from Holiday Goodreau**

In her comment, Holiday agreed with another comment from Betty later in the chapter regarding photo selection. The Working Group planned to discuss the comment when they got to the relevant section.

**Comment 2 from Kristen Honey**

Kristen Honey, PhD, PMP Executive Director of InnovationX, HHS, explained that language that implies “post-infection” can be replaced with the term “infection-associated chronic illnesses,” in keeping with newer terminology associated with Long COVID. Kristen suggested that this phrasing be used for chronic or persistent Lyme disease to indicate ongoing infection. She recommended that the language be changed throughout the entire report.

Members discussed the importance of indicating ongoing infection in the language describing tick-borne diseases. Linden observed that this issue had been flagged in numerous parts of the report and recommended a consistent use of terms. He noted that wherever the science is not settled, pathogenesis-agnostic terms were appropriate. Monica E. Embers, PhD, Associate Professor and Director of Vector-borne Disease, CAPT Rebecca Bunnell, MPAS, PA-C, Senior Advisor, Division of Model Learning Systems, Learning and Diffusion Group, The Center for Medicare and Medicaid Innovation, Centers for Medicare and Medicaid Services, and Jennifer agreed. Charles Benjamin (Ben) Beard, PhD, Deputy Director, Division of Vector-borne Diseases, Centers for Disease Control and Prevention, noted that the terminology comes from the previous report. Dennis Dixon, PhD, Chief, Bacteriology and Mycology Branch, National Institute of Allergy and Infectious Diseases, National Institutes of Health, U.S. Department of Health and Human Services, stated that terminology should be determined by the particular stage or sequence of disease. Kirby C. Stafford III, PhD, Chief Scientist and State Entomologist, Department of Entomology, Center for Vector Biology & Zoonotic Diseases, The Connecticut Agricultural Experiment Station, proposed using the term “tick-associated chronic illnesses.”

After some discussion, the members assembled a list of potential terms and agreed to hold a separate discussion after the chapter reviews on Day 2 to come to a consensus on the nomenclature for tick-borne diseases in the report.

**Comment 3 from Kristen Honey**

Because this comment involved terminology for a later discussion, group members agreed to disregard the comment.

**Comment 4 from Betty Maloney**

Betty recommended changing the word “chapter” to “report.” Ben agreed with the change.

**Comment 5 from Betty Maloney**

Betty questioned if there would be content related to health equity, which was included in a bulleted list in the chapter but not explained. Jennifer recommended writing a paragraph that references the more detailed discussions of health equity in the Access to Care chapter.

**Comment 6 from Kristen Honey**

Kristen explained that the passage about the percentage of patients who do not recover and continue to have persistent symptoms could be adjusted—as there are a range of studies with different percentages attributed to this group. She recommended using statistics from the 2020 HHS Health+ Lyme Disease report. Jennifer agreed to add the reference during chapter revisions.

**Comment 7 from Betty Maloney**

Betty noted that the 5 to 20 percent statistic regarding patients who experience symptoms from tick-borne illnesses differs from other studies, and the passage itself was not cited. Ben responded that the statistic was meant to capture a range of studies. Betty explained that some studies show that up to approximately 30 percent of patients had persistent symptoms. Members agreed to adopt the “up to 30 percent” language and to cite studies that support this statistic. Rather than citing numerous studies, Linden recommended referencing a review article encompassing the results of several studies. Monica offered to help with references and confirm the precise numbers.

**Comment 8 from Betty Maloney**

Betty explained that her comment primarily involved clarifying the wording in passages about supporting literature and post-infection terminology. Chapter authors agreed to revise the section according to Betty’s comment.

**Comment 9 from Betty Maloney**

Betty noted that the section involving the photograph of a pregnant woman should be adjusted to portray this person being infected in an environment other than a wooded area—specifically a suburban backyard. She explained that the point was to demonstrate the risk for tick-borne diseases in developed locations. Ben agreed and Holiday recommended also adding children to demonstrate risk to this population, as well. Chapter authors agreed to work with graphic designers to find a more appropriate image.

**Comment 10 from Betty Maloney**

Betty noted that this passage involved terminology, which will be handled in a separate conversation later in the meeting.

**Comment 11-12 from Betty Maloney and Jennifer Platt**

Betty stated that she had trouble following the passage, which was intended to compare two ideas but did not. In a follow-up comment, Jennifer agreed and recommended reorganization of the section.

**Comment 13-14 from Betty Maloney**

These comments involved terminology that will be resolved once members have reached consensus on the terms they will use throughout the report.

**Comment 15 from Betty Maloney**

Betty explained that her comment involved the portrayal of overlapping symptoms. Members recognized this was a minor change in language and the authors agreed to revise the section.

**Comment 16 from Betty Maloney**

Betty expressed concern about the dismissive tone of a passage involving patient symptoms, which she recognized was not intended. Jennifer volunteered to revise the passage.

**Comment 17 from Betty Maloney**

Betty’s comment was a minor grammatical change, which was revised during the meeting.

**Comment 18 from Betty Maloney**

Betty explained that she preferred “associated” rather than “attributed” language in discussing symptoms of persistent Lyme disease due to the latter often being used to dismiss patients. Ben noted that his subcommittee had a diversity of views of Lyme disease (both Infectious Diseases Society of America and International Lyme and Associated Diseases Society) and the “attributed” language was voted on; however, he recognized that the Working Group was not bound by this decision and agreed that “associated” was a more inclusive term. Members agreed to make the change globally.

**Comments 19-21 from Betty Maloney**

These comments involved terminology that will be resolved once members have reached consensus on the terms they will use throughout the report.

**Comment 22 from Betty Maloney**

This comment refers to the discussion of Comment 5 and will be adjusted accordingly.

**Comment 23 from Betty Maloney**

This comment involved terminology that will be resolved once members have reached consensus on the terms they will use throughout the report. Authors will also reword the passage for clarity.

**Comment 24 from Betty Maloney**

This comment involved a descriptor in the rationale which members revised.

**Overall Comment from Jennifer Platt**

Jennifer observed that public comments were often beyond the scope of the chapter, but wanted to find appropriate language to acknowledge them at the end of the chapter. Betty, Linden, and Monica expressed discomfort in putting undue emphasis on particular issues brought forward in public comments, particularly those that have not been studied. Linden proposed using general patient-centered language to acknowledge the comments, which could be placed in the Public Comments chapter. Members agreed to this addition.

Diagnostics Chapter Review

Holiday opened the discussion of the Diagnostics chapter to review member comments. Cat was present to record Working Group decisions made to address each comment.

**Comment 1 from Betty Maloney**

Betty noted that this chapter was laid out differently than other chapters. Monica agreed to make modifications to ensure consistency between chapters.

**Comment 2 from Kristen Honey**

Kristen commented that recommendation 3 was based on an unfunded mandate for an innovation pipeline and advised that it should be altered to be actionable. Monica agreed and noted that Biomedical Advanced Research and Development Authority (BARDA) was originally included as a funding organization in the recommendation; however, the Working Group previously agreed to remove specifics. Rebecca recommended providing examples of organizations that received funding. Linden advised putting this addition into the rationale for the recommendation. LTC Michelle Colacicco-Mayhugh, PhD, PMP, Deputy Medical Entomology Consultant to the U.S. Army Surgeon General, suggested simply adding the “funded” descriptor in the text. Monica will add this language and examples to the rationale.

***Vote***

As part of this conversation, Betty, Rebecca, and Ben promoted the idea of placing the rationale directly below the recommendations at the front of each chapter (and remove the rationales from the end of each chapter). Eleven members voted for the motion. The motion passed.

***Vote***

The members also agreed to have a vote to add language about a funded mandate and examples of other funded mandates to the rationale. Eleven members voted for the motion. The motion passed.

**Comment 3 from Betty Maloney**

Betty explained that her comment on using “gold standard” as a descriptor for two-tier testing was impractical. Monica proposed changing the language to “widely used.”

**Comment 4-5 from Linden Hu and Betty Maloney**

Linden noted that referring to tick-testing services as personalized medicine was unclear. Betty explained her response that the findings from the results of the tick-test can determine what treatment to provide the patient. Ben noted that the CDC does not recommend using tick testing to guide clinical judgment because a patient may have been bitten by more than one tick, which might not be submitted for testing. Monica responded that there could be a distinction drawn between treating individuals and personalized medicine as a field; she opted to remove it to simplify the passage.

**Comment 5 from Gaby Zollner**

Gaby noted that diagnostic tests identify pathogens rather than the disease itself. Monica noted it was an oversight and will change the language to “infections.”

**Comment 6 from Gaby Zollner**

Gaby explained that “disease sensitivity” was confusing in the context of diagnostics. Monica noted this was a similar oversight and the comment was revised during the meeting.

**Comment 7 from Jennifer Platt**

Jennifer expressed dismay with the passage identifying the blacklegged tick as “the most medically important arthropod” in the United States. Monica agreed and recommended rewording it to reflect the high frequency of diseases it causes. Ben added that the blacklegged tick carries a number of pathogens including Lyme, which has the highest case rates of tick-borne disease nationally. Kirby recommended stating that the blacklegged tick is “one of the most important,” in order not to diminish the research importance of other ticks. Betty added the phrase, “based on studies to date” to provide relevance. Monica agreed to the change and recommended adding a reference to CDC epidemiology.

**Comment 8 from Betty Maloney**

Betty recommended a minor revision to the language of the passage.

**Comment 9 from Linden Hu**

Linden explained that more bridging sentences were needed in the passage to explain that more confirmation studies were needed. Linden agreed to help revise the section.

**Comment 10 from Kristen Honey**

Kristen promoted the idea of altering a passage about the difficulty of advancing new diagnostic advances to commercially viable products to recommend direct congressional appropriations to fund such efforts. She recommended providing concrete examples. Gaby observed that this language was a theme throughout the report and should be highlighted in the introduction chapter. Dennis advised that the language should reflect the challenges to commercialization even with government support. Linden proposed using orphan drug development as a comparison. Kristen offered to help articulate examples of developing new markets and will work with Monica to revise the passage.

**Comment 11 from Kristen Honey**

Kristen proposed adding a paragraph on the LymeX diagnostic competitions. Monica agreed with including this material.

**Comment 12 from Linden Hu**

Linden explained that the tone of the passage about lumping together diagnostic approaches was more negative than other chapters without specific examples. Monica agreed and proposed rewording or eliminating the section. Betty encouraged rewording and highlighted the need to add language that supports patients. Ben advised adding more specifics about FDA-certified tests. Betty drew a distinction between CLIA- and non-CLIA-certified labs as a way to express a hierarchy of test reliability. Monica will revise the passage based on both Ben and Betty’s comments.

**Comment 13 from Linden Hu**

Linden noted that the tone of the passage regarding commercialized tests without published clinical performance data could be eliminated. Monica agreed. Betty and Kristen discussed the merits of adding detail about the shortcomings of tests. Ben recommended simply taking the section out as Linden proposed. Monica will take out the sentence and replace it with a comment about a gap in streamlining testing standards.

**Comment 14 from Linden Hu**

Linden explained that the passage set basic and translational science against each other and was unnecessary. He recommended adding a sentence about promoting more funding for translational science instead. Monica agreed and will revise the passage.

**Comment 15 from Gaby Zollner**

Gaby emphasized the importance of providing more funding to translational research and recommending adding this idea to the introduction. Monica agreed and referenced the public comment on the lack of funding support for tick-borne disease research compared to other fields of disease research. Kristen recommended keeping the passage and adding it to the introduction, as well.

**Comment 16 from Betty Maloney**

Betty agreed with adding language to promote the commercial development of diagnostic tests to the introduction chapter in her comment, but she suggested waiting to discuss this until the working group can address that chapter directly. Jennifer emphasized the importance of developing at home tests. Monica noted that several technologies are available, but not commercially available.

**Comment 17 from Linden Hu**

Linden explained that the controversy laid out in the passage was not well-defined and recommended removing the section. Monica agreed to remove the language and instead add language about the varying quality of diagnostic tests.

**Comment 18 from Linden Hu**

Linden stated that the passage did not include examples of well-validated tests that had been disregarded. Monica opted to revise the section to provide examples or delete it.

**Comment 19 from Linden Hu**

Linden noted that “Lyme wars” may not be a productive way of framing controversies surrounding Lyme disease. He observed that there was general consensus that better tests are needed. Monica agreed. Betty asserted that there are controversies, and that even though tone was important, they should be acknowledged. Linden agreed that controversies should be discussed but asserted that this might not be the area to express them—given the consensus about needing better tests. Monica observed that poor diagnostic testing has contributed to the controversies themselves, which end up reducing access to care. Betty and Holiday agreed.

**Comment 20 from Gaby Zollner**

Gaby noted that the passage involving the national framework needs to be revised to reflect the current national strategy. Monica agreed to the revisions.

Tick Ecology Chapter Review

Linden opened the discussion of the Tick Ecology chapter to review member comments. Cat was present to record Working Group decisions made to address each comment.

**Comment 1 from Kirby Stafford**

Kirby explained that “conditions” was undefined in the third recommendation. He advised changing the language to “illnesses.” Ben noted that the intent of the language was meant to include syndromes such as Alpha-gal (AGS) along with other tick-borne diseases but was open to Kirby’s suggestion. Members agreed and changed the language to “tick-associated illnesses” to express Ben’s intent in broad terms.

**Comment 2 from Kristen Honey**

In her comment, Kristen suggested referencing interdisciplinary approaches to a passage about tick suppression methods. She explained that this approach could include using available crowdsourced technology, such as the tick tracker application, to reduce incidence of tick bites. Kirby responded that the passage was meant to examine the limits of tick suppression methods and was meant to be limited in scope. Linden and Kristen agreed that this idea could be better suited in the introductory chapter and possibly the conclusion of the report.

Members also discussed other technological opportunities for tick suppression. Kirby noted that the Tick Ecology subcommittee spoke with BARDA, and BARDA representation presented on possible technological avenues. Monica inquired about the potential work by Advanced Research Projects Agency for Health (ARPA-H), a new federal program focused on accelerating discoveries in health science. Kristen provided some detail on how Defense Advanced Research Projects Agency (DARPA), a similar program has operated. Dennis noted that the program is new, and details are currently unavailable.

**Comment 3 from Jennifer Platt**

Jennifer responded to the description of a referenced study, noting it was unclear whether integrated programs work; she asserted more investigation is needed—and observed a lack of studies in the southern states targeting *Amblyomma*. Betty asked Kirby about the study, recalling limited residential participation. Kirby acknowledged this was a common issue with large integrated studies, but he believed more such studies were needed. Ben also recognized integrated program studies have not yielded positive results. Jennifer noted that such studies had been done with *Ixodes scapularis,*but *Amblyomma*was understudied. Kirby agreed with this assessment.

**Comment 4 from Jennifer Platt**

Related to her previous comment, Jennifer noted that there are differences in the aggressiveness of *Ixodes*and *Amblyomma*, which should be acknowledged in the highlighted passage. Linden noted this could easily be added and Kirby agreed to revise.

**Comment 5 from Linden Hu**

Linden questioned whether specific tick control products should be referenced in the text, rather than generic language. Betty recommended against mentioning specific products in order to avoid confusing readers. Ben suggested language indicating “nootkatone-based products” to keep the language broad. Kirby agreed to the revision.

**Comment 6 from Betty Maloney**

Betty related a passage on personal protective equipment (PPE) to her experience presenting at arborist conferences on tick-borne disease risk. She noted that the risks for tick-borne illness were not stressed; thus, employees were avoiding using the unwieldly PPE. Betty wanted to highlight PPE programs to educational efforts to ensure there’s understanding of the risks for tick-borne illnesses in workplace settings. Ben underscored the importance of both employers and employees being educated in this area. Kirby recommended a revision to add language about education programs in the passage.

Discussion of Unresolved Issues

Linden opened a discussion on any unresolved issues that emerged from Day 1 of the July Working Group meeting, noting that members were interested in having a substantive discussion on terminology to reach consensus for consistent use of terms throughout the report.

**Terminology Discussion**

Cat presented the list of terms formulated by members earlier in the meeting, which included various ways of describing tick-borne disease, as well as long-term symptoms experienced by COVID-19 patients.

Linden reiterated sentiments he had heard from members, indicating that they wanted to use methods to broadly describe the mechanisms of tick-borne diseases. In practice, Linden identified the spirit of this process by employing terms that are accurate without being cumbersome. Monica recommended using “infection-associated chronic illness” when comparing chronic tick-borne illness to COVID-19-related chronic illness. Ben noted that chronic COVID-19 illness itself has numerous terms associated with it, including post-acute sequalae (PASC) and Long COVID. Kristen noted that upcoming federal strategy plans on COVID-19 use Long COVID as a preferred term, and she suggested the members adopt it for consistency. Holiday noted that Dr. Aucott at Johns Hopkins University is using “Long Lyme” to talk about persistent Lyme disease while referencing the ongoing symptomatic experience of Long COVID patients. Betty disagreed with this usage because it is not used widely in Lyme disease literature.

Jennifer recommended using “tick-associated chronic illnesses” as a broad term to discuss all diseases and syndromes related to tick bites. Sunil Sood, MD, Chair of Pediatrics, South Shore University Hospital, Attending Physician, Infectious Diseases, Cohen Children’s Medical Center, Professor of Pediatrics at Hofstra/Northwell, agreed with Jennifer. Betty contended that other, additional terms were needed for specific diseases.

Betty observed that there are a number of terms associated with chronic Lyme disease. She recognized that the challenge in identifying the best terminology relates to a lack of scientific understanding of whether patients were experiencing ongoing active infections. Betty noted that “chronic” was a term often dismissed by the medical community and had potential negative connotations. Her subcommittee used Persistent Lyme Disease/Chronic Lyme Disease (PLD/CLD) to include terms preferred by both patient advocates and providers. Ben disagreed with PLD/CLD term because it was not clear if patients have ongoing infections or persistent symptoms resulting from damage caused by past infections. Betty acknowledged Ben’s point but wanted to ensure an accurate portrayal of the illness. Ben responded that he preferred the term “persistent symptoms associated with Lyme disease” as a way of keeping terminology broad while preserving accuracy. This was the term used in the 2020 Tick-Borne Disease Working Group Report. Betty agreed that the term was agnostic to the mechanism of disease (ongoing infection or not) and endorsed its use; although she thought “illness” was preferred to “symptoms,” to be consistent with the catch-all term—infection-associated chronic illnesses. Monica added that “illness” was a broad term that captured both signs and symptoms. Dennis noted that NIH uses post-treatment Lyme disease syndrome (PTLDS) in various studies and recommended the group preserve that term when speaking precisely about them.

Holiday suggested adding a separate category for tick-borne co-infections, which also manifest as chronic or persistent symptoms. Members agreed. Kirby added the term current and persistent coinfections for more specificity.

Ben suggested eliminating all terms to which there was not broad agreement in order to simplify the discussion. Jennifer encouraged the group to include a glossary of terms in the report, regardless of what they choose—and members agreed. Linden observed that the Working Group preferred Long COVID when talking about persistent symptoms related to a COVID-19 infection. Members agreed. Linden also noted that tick-associated chronic illness was a broad term that could be used to discuss tick-borne diseases more broadly. Members also agreed with this observation. Monica indicated a preference for creating a hierarchy of terms to use depending on context. Linden agreed. Cat created the list below, based on the above discussion:

Infection-associated chronic Illnesses
	Long COVID
		Tick-bite associated chronic illness
		Persistent symptoms [illness] associated with Lyme disease
			Post-treatment Lyme disease syndrome (PTLDS) – when citing literature or speaking about specific populations.
			Persistent Lyme disease/Chronic Lyme disease (PLD/CLD)
			Persistent symptoms associated with other tick-borne diseases
			Persistent manifestations associated with Lyme disease
			Current and persistent coinfectionsLinden encouraged members to consider the entire list of terms for a vote. Linden and Betty agreed that members should also hold a vote to preserve either persistent illness associated with Lyme disease or PLD/CLD as a term, but not both. Linden polled the Working Group if they wanted to vote on Day 1 or Day 2. The Working Group opted to vote on Day 1.

***Vote***

Nine members voted to adopt *persistent illness associated with Lyme disease*as terminology in the report. Two members voted to adopt PLD/CLD.

Ben contended that he did not want to eliminate PLD/CLD, but instead preserve it for use in specific relevant circumstances where it is referenced in the literature. Betty also observed that one voting member was unable to participate. Linden and Holiday recommended the group hold a second vote the following day to allow time for deliberation.

Adjournment

The meeting was adjourned at 4:30 pm EST.

Appendix 1: Tick-Borne Disease Working Group Members and HHS Support Staff

Tick-borne Disease Working Group

**In alphabetical order:**

**Co-Chair**

*Holiday Goodreau*, Executive Director, LivLyme Foundation, Co-creator, TickTracker (Present)

**Co-Chair**

*Linden Hu*, MD, Professor of Microbiology and Medicine, Vice Dean for Research, Tufts University School of Medicine (Present)****

*Charles Benjamin (Ben) Beard*, PhD, Deputy Director, Division of Vector-borne Diseases, Centers for Disease Control and Prevention, U.S. Department of Health and Human Services

*CAPT Rebecca Bunnell*, MPAS, PA-C, Senior Advisor, Learning and Diffusion Group, *Center for Medicare & Medicaid Innovation**,* Centers for Medicare & Medicaid Services, U.S. Department of Health and Human Services (Present)****

*Dennis Dixon*, PhD, Chief, Bacteriology and Mycology Branch, National Institute of Allergy and Infectious Diseases, National Institutes of Health, U.S. Department of Health and Human Services (Present)****

*Monica E. Embers*, PhD, Associate Professor and Director of Vector-borne Disease Research, Tulane National Primate Research Center (Present)****

*Elizabeth Maloney*, MD, President, Partnership for Tick-borne Diseases Education (Present)****

*Robert J. Miller*, PhD, National Program Leader, Agricultural Research Service, U.S. Department of Agriculture (Present)****

*CDR Todd Myers,* PhD, HCLD (ABB), MB (ASCP), Office of Counterterrorism and Emerging Threats, Office of the Chief Scientist, Office of the Commissioner, U.S. Food and Drug Administration, U.S. Department of Health and Human Services (Present)****

*Jennifer Platt*, DrPH, Co-founder, Tick-borne Conditions United (Present)****

*Sunil K. Sood*, MD, Chair of Pediatrics, South Shore University Hospital, Attending Physician, Infectious Diseases, Cohen Children’s Medical Center, Professor of Pediatrics at Hofstra/Northwell (Present)****

*Kirby C. Stafford III*, PhD, Chief Scientist and State Entomologist, Department of Entomology, Center for Vector Biology & Zoonotic Diseases, The Connecticut Agricultural Experiment Station (Present)****

*Leith Jason States*, MD, MPH (FMF), Deputy Chief Medical Officer, Office of the Assistant Secretary for Health, U.S. Department of Health and Human Services (Present)****

*Gabriella Zollner (Romero)*, PhD, Program Manager, Deployed Warfighter Protection Program, U.S. Department of Defense (Present)

Alternative Federal Representatives

**In alphabetical order:**

*Kristen Honey*, PhD, PMP Executive Director of InnovationX, U.S. Department of Health and Human Services

*RADM Estella Jones*, DVM, U.S. Public Health Service, Deputy Director, OCTET U.S. Food and Drug Administration

*Andrew Y. Li*, PhD, Research Entomologist, Invasive Insect Biocontrol & Behavior Laboratory, U.S. Department of Agriculture

*Samuel S. Perdue*, PhD, Chief, Basic Sciences, Bacteriology and Mycology Branch at National Institutes of Health

*CDR Monica Reed-Asante*, PharmD, USPHS, Pharmacist, Senior Health Insurance Specialist for Centers for Medicare and Medicaid Services

*LTC Michelle Colacicco-Mayhugh*, PhD, PMP, Deputy Medical Entomology Consultant to the U.S. Army Surgeon General

HHS Support Staff

**In alphabetical order:**

*James (Jim) Berger*, MS, MT (ASCP), SBB, Designated Federal Officer, Tick-Borne Disease Working Group, Senior Blood and Tissue Policy Advisory, Office of Infectious Disease and HIV/AIDS Policy, U.S. Department of Health and Human Services

*B. Kaye Hayes*, MPA, Alternate Designated Federal Officer, Tick-Borne Disease Working Group, Deputy Director, Office of Infectious Disease and HIV/AIDS Policy, Office of the Assistant Secretary for Health, U.S. Department of Health and Human Services

*Chinedu Okeke*, MD, MPH-TM, MPA, Senior Policy Advisor, Office of Infectious Disease and HIV/AIDS Policy, U.S. Department of Health and Human Services

*Lauren Overman*, MPH, CPH, Public Health Analyst, Office of Infectious Disease and HIV/AIDS Policy, U.S. Department of Health and Human Services

*Allison Petkoff*, Public Health Analyst, Office of Infectious Disease and HIV/AIDS Policy, U.S. Department of Health and Human Services****

Appendix 2: Writing Groups for the 2022 Report to Congress and the HHS Secretary

**(Chapter leads are bold.)**

Executive Summary—Linden Hu, To be determined (TBD)

Chapter 1: Introduction—***Holiday Goodreau**, **Linden Hu**, Ben Beard, Rebecca Bunnell, Monica Embers, Betty Maloney, Jennifer Platt, Leith States*

Chapter 2: Methods—RLA

Chapter 3: Changing Dynamics of Tick Ecology, Personal Protection, and Control—***Robert Miller**, **Kirby Stafford**, Michelle Colacicco-Mayhugh, Jennifer Platt, Gabriella Zollner (Romero)*

Chapter 4: Clinical Presentation and Pathogenesis—***Ben Beard**, **Jennifer Platt**, **Leith States**, Rebecca Bunnell, Monica Embers, Betty Maloney (resigned), Sunil Sood*

Chapter 5: Diagnostics—***Monica Embers**, **Todd Myers**, Michelle Colacicco-Mayhugh*

Chapter 6: Disease Prevention and Treatment—***Dennis Dixon**, **Sunil Sood**, Monica Embers, Sam Perdue, Jennifer Platt*

Chapter 7: Access to Care and Education—***Rebecca Bunnell***, ***Betty Maloney**,****Leith States, Gabriella Zollner (Romero)*

Chapter 8: Public Comment—*Holiday Goodreau*, *Linden Hu*, *Lauren Overman*, *Jenifer Platt*, *Gabriella Zollner (Romero)*

Chapter 9: Looking to the Future—TBD

Chapter 10: Conclusions—TBD

                    
  


Content created by Office of Infectious Disease and HIV/AIDS Policy (OIDP) Content last reviewed November 16, 2022Back to top
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