BackgroundMethodsResultsSummary of Subcommittee Report to the Working GroupAppendix 1: References by Topic Appendix 2: Subcommittee Agendas and Top Line SummariesAppendix 3: Informed Consent for Treatment of Persistant Lyme DiseaseAppendix 4: The "Lyme Literate" Mental Health Evaluation Information and opinions in this report do not necessarily reflect the opinions of the working group, the U.S. Department of Health and Human Services, or any other component of the federal government. Readers should not consider the report or any part of it to be guidance or instruction regarding the diagnosis, care, or treatment of tick-borne diseases or to supersede in any way existing guidance. All subcommittee members actively participated in the development of this report. Members voted to approve submission of the report to the Working Group and on the wording of each of the possible actions contained in the report. The vote to submit the report indicates general agreement with the content of the document, but it does not necessarily indicate complete agreement with each and every statement in the full report. Background This subcommittee was tasked by the TBDWG with investigating any and all factors that might be helping or hindering patients with Lyme and other tick-borne diseases (TBDs) with regard to accessing care, which includes diagnosis and treatment of the disease(s) as well as any associated symptoms and co-infections, and support before and after diagnosis and treatment. To guide its investigation of these factors and inform our areas of focus, the subcommittee relied on: the expertise and experience of its members; presentations to the subcommittee by specific subject matter experts; a review of the available literature, especially any peer-reviewed research; and discussions of the various issues identified on our weekly subcommittee calls. Through this process, we identified several priority themes and issues that this subcommittee believes significantly impact Lyme/TBD patients in their attempts to readily access affordable and effective care and support. These themes and issues include, but are not limited to: The current state of patient access to care and the support available through patient advocacy groups, state and federal assistance programs, and free educational programs; Education and awareness for patients, their loved ones, and the general public, including historically underrepresented and high-risk patient populations such as children, low-income individuals, the elderly, the military and their family members, migrant workers, etc.; Legislation to protect the rights of patients and to protect practitioners who treat patients based on their clinical judgment from disciplinary action by state medical license boards; Basic and continuing medical education on Lyme and other TBDs for healthcare providers in multiple disciplines (e.g., primary care, cardiology, behavioral health, infectious disease, rheumatology, neurology, etc.); Current obstacles to affordable medical care, including inappropriate use by practitioners of CDC surveillance criteria as the standard for clinical diagnosis, denial by insurance companies for reimbursement of treatment/services based on same CDC criteria, costly and ineffective treatments by exploitive and unscrupulous practitioners, competing guidelines for treatment and care without a common and established standard of care (e.g., IDSA versus ILADS guidelines with current governmental and insurance industry preference for IDSA); and Proper and affordable diagnosis and treatment, especially the availability of reliable diagnostic testing, and including insurance coverage for mainstream and complementary treatment options, practitioner recognition of acute versus late-stage (including neuro-psychiatric manifestations) versus chronic disease versus post-treatment disorder, long-term recovery and support. Table 1: Members of the Access to Care & Patient Support Subcommittee Member Type Stakeholder Group Expertise (Co-Chair)Commander Scott J. Cooper, MMSc, PA-C, U.S. Public Health Service, Baltimore, MD Federal Senior Technical Advisor and Lead Officer for Medicare Hospital Health and Safety Regulations, Centers for Medicare and Medicaid Services, U.S. Department of Health and Human Services (Co-Chair)Paula Jackson Jones, Newcastle, ME Selected on 3/14/18 Public Advocate, patient President and Co-Founder, Midcoast Lyme Disease Support and Education Karen Vanderhoof-Forschner Previous Co-Chair, resigned 3/6/18 Public Advocate Robert Bransfield, MD, DLFAPA, Red Bank, NJ Public Provider Private Practice; Associate Professor, Department of Psychiatry, Rutgers-RWJ Medical School Sherrill Franklin, West Grove, PA Joined April 24, 2018 Public Advocate, patient Advocate for better diagnostic tools and definitive treatments for tick-borne diseases Anna Frost, PhD, Port Orchard, WA Public Researcher, patient Lyme disease researcher Holiday Goodreau, Denver, CO Public Advocate President and Executive Director, The LivLyme Foundation Enid Haller, LCSW, PhD, Holliston, MA Exited the role on April 24, 2018 Public Advocate, patient Executive Director, Lyme Center of Martha's Vineyard Colonel Nicole Malachowski, Springfield, VA Public Patient Retired, U.S. Air Force Leonard Schuchman, DO, MPH, FAAFP, Mount Laurel, NJ Public Provider Family Practitioner Sheila M. Statlender, PhD, Newton Centre, MA Public Provider, patient Clinical Psychologist, Private Practice; Chair, Massachusetts Lyme Legislative Task Force Kathleen Steele, LCSW, San Carlos, CA Public Provider Psychotherapist Table 2: Overview of Access to Care & Patient Support Subcommittee Meetings, 2018 Meeting No. Date Present Topics Addressed 1 February 28, 2018 Kristen Honey, Scott J. Cooper, Karen Vanderhoof-Forschner, Anna Frost, Robert Bransfield, Enid Haller, Paula Jackson Jones, Nicole Malachowski, Leonard Schuchman, Sheila Statlender, Kathleen Steele, Richard Wolitski, Cat Thomson Discussed the preparation of materials for the working group; troubleshot some technical issues around group communication and information sharing; focused on identifying, clarifying, and organizing key themes, issues, and questions that affect access to care and support to patients suffering from tick-borne diseases. 2 March 7, 2018 Kristen Honey, Scott J. Cooper, Anna Frost, Robert Bransfield, Holiday Goodreau, Enid Haller, Paula Jackson Jones, Nicole Malachowski, Leonard Schuchman, Kathleen Steele, Richard Wolitski, Cat Thomson Agreed to vote anonymously via email for a new non-federal co-chair; outlined the process for voting and decision-making in general; discussed timeline and deliverables; began deciding who would write about the group's six issues/priorities; discussed the process for using Sharepoint and engaging speakers; agreed to develop a workplan. 3 March 14, 2018 Kristen Honey, Scott J. Cooper, Anna Frost, Holiday Goodreau, Enid Haller, Paula Jackson Jones, Nicole Malachowski, Leonard Schuchman, Sheila Statlender, Kathleen Steele, Richard Wolitski, Cat Thomson Reviewed and discussed Vision, Values, Ethics pledge; discussed unity/division in the Lyme community, specifically within patient advocacy; announced new co-chair; reviewed timeline and deliverables; discussed division of six priorities and workplan 4 March 28, 2018 Kristen Honey, Scott J. Cooper, Paula Jackson Jones, Anna Frost, Holiday Goodreau, Enid Haller, Nicole Malachowski, Leonard Schuchman, Sheila Statlender, Kathleen Steele, Richard Wolitski, Cat Thomson The Access to Care Services and Support to Patients subcommittee spent most of the meeting discussing communication as well as their Issues and Priorities work plan (see summary of their discussion below). In addition, they made some initial decisions about which topics each member would write about. They worked to ensure all of the members could access the available collaboration tools with which to do the writing. And they made suggestions for guest speakers who could address gaps in their collective knowledge. 5 April 4, 2018 Kristen Honey, Scott J. Cooper, Paula Jackson Jones, Robert Bransfield, Anna Frost, Holiday Goodreau, Enid Haller, Nicole Malachowski, Sheila Statlender, Richard Wolitski, Cat Thomson The Access to Care Services and Support to Patients subcommittee briefly discussed speakers they would like to have present at the remainder of their meetings. They also heard from the Designated Federal Officer about some of the Tick-Borne Disease Working Group processes and discussed topics to include in their report to the working group. The topics they discussed are summarized below. 6 April 18, 2018 Scott J. Cooper, Paula Jackson Jones, Robert Bransfield, Anna Frost, Holiday Goodreau, Enid Haller, Nicole Malachowski, Leonard Schuchman, Sheila Statlender, Kathleen Steele, Richard Wolitski, Jennifer Gillissen, Cat Thomson The subcommittee received updates from the Tick-Borne Disease Working Group leadership and discussed using collaboration tools. They also heard from the following three speakers, along with the topics of their presentations: Betty Maloney, MD - Physician education and access to care; Scott Santarella - Testing initiatives; Mary Beth Pfeiffer - experience as an investigative reporter researching Lyme disease 7 April 25, 2018 Kristen Honey, Scott J. Cooper, Paula Jackson Jones, Sherrill Franklin, Anna Frost, Holiday Goodreau, Nicole Malachowski, Sheila Statlender, Kathleen Steele, Richard Wolitski, James Berger, Cat Thomson The subcommittee welcomed a new member, Sherill Franklin. They also received updates from the Tick-Borne Disease Working Group leadership and then heard the following three presentations: Bennett Nemser - Cohen Lyme and Tickborne Disease Initiative; Susan Green - helping patients empower themselves to handle insurance company denials & working to change state laws; Nevana Zubcevik, MD - Access to care challenges 8 May 2, 2018 Scott J. Cooper, Paula Jackson Jones, Sherrill Franklin, Anna Frost, Holiday Goodreau, Nicole Malachowski, Sherrill Franklin, Richard Wolitski, Jennifer Gillissen, Cat Thomson The subcommittee spent the meeting listening to the following three presenters: Lorrain Johnson - MyLymeData project; Tammy Crawford - Chronic Lyme sample blood bank; Richard Horowitz, MD - Physician perspective on access to care 9 May 3, 2018 Kristen Honey, Scott J. Cooper, Paula Jackson Jones, Sherrill Franklin, Anna Frost, Holiday Goodreau, Sheila Statlender, Richard Wolitski, Cat Thomson The subcommittee spent the entire meeting reviewing and discussing their report to the Tick-Borne Disease Working Group. Specifically, they discussed the potential actions they felt should be included in the report. Table 3: Presenters to the Access to Care & Patient Support Subcommittee Meeting No. Presenter Topics Discussed 6 Betty Maloney, MD, Minnesota Lyme activist and President of Partnership for Healing & Health Physician education and access to care 6 Scott Santarella, Global Lyme Alliance Testing initiatives 6 Mary Beth Pfeiffer, Author Experience as an investigative reporter researching Lyme disease 7 Bennett Nemser, Epidemiology, Senior Program Officer, Cohen Lyme Foundation Cohen Lyme and Tickborne Disease Initiative 7 Susan Green, Legislative Counsel NatCapLyme Helping patients empower themselves to handle insurance company denials & working to change state laws 7 Nevana Zubcevik, MD, Dean Center, Spaulding Rehabilitation Network Access to care challenges 8 Lorrain Johnson, LymeDisease.org MyLymeData project 8 Tammy Crawford, Executive Director, Focus on Lyme Chronic Lyme sample blood bank 8 Richard Horowitz, MD, Hudson Valley Healing Arts Center Physician perspective on access to care Table 4: Votes Taken by the Access to Care & Patient Support Subcommittee Meeting or Date Motion Results Minority Response 3/2/17 First vote on which Issues & Priorities document (A or B) to send to Working Group 0 of votes in favor of A. 8 of votes in favor of B. 1 person formally abstained. 2 failed to vote even after being contacted by a co-chair. Version B was submitted to Working Group. n/a 3/14/17 Select new subcommittee co-chair 6 votes in favor of Paula Jackson Jones. 4 votes in favor of Enid Haller. Paula Jackson Jones was sworn in as co-chair. n/a 5/4/18 Vote via email to approve the final Results section of the report, including all Potential Actions 9 votes in favor by email. 1 abstained. n/a Methods The Chair and Vice-Chair of the Working Group selected two members for each subcommittee to serve as co-chairs (see Table 1). One was a federal employee (Commander Scott Cooper) and the other was a member of the public (Karen Vanderhoof-Forschner, later replaced by Paula Jackson Jones). If one of the members was not able to take on the co-chair duties, subcommittee members were selected by the single co-chair in active consultation with the Chair and Vice-Chair from among the subcommittee members. Subcommittee members were selected from a total of 220 nominations that were received from people who had nominated themselves to either one of the requests that were published in the Federal Register to serve on the Working Group or on a subcommittee. Of these, a total of 68 people expressed interest in the Access to Care Services and Support to Patients subcommittee. These nominees were considered using a two-stage process. First, the co-chairs reviewed all of the nominations and identified the people who have experience related to helping patients with tick-borne diseases, as well as some knowledge of the specific content of the subcommittee(s) of their choice. In addition, the co-chairs ensured that the perspectives of patients and other key stakeholders outlined in the 21st Century Cures Act were identified during the first round of review. Subsequently, the co-chairs discussed the identified individuals to select the best well-rounded and diverse candidates for the subcommittee. This list was sent to the TBDWG and the individuals selected were contacted and determined if they would participate in the Access to Care Services and Support to Patients subcommittee. Nine individuals consented to working on the subcommittee and thus became members of the subcommittee. On April 24, 2018, Enid Haller was replaced by Sherrill Franklin. The total composition of the subcommittee is shown in Table 1. The key characteristics of subcommittee co-chairs and members (e.g., professional expertise, past experience addressing these issues, patient, family member, etc.) are outlined in Table 1. Table 1 also demonstrates that one of the eleven members of the subcommittee represented a federal partner (U.S. Public Health Service) while nine of the ten members represented a non-federal perspective. From February 28 to May 3, 2018, subcommittee members met by teleconference and webinar each Wednesday from approximately 2:00 pm to 4:00 pm EST (Table 2). In the early stages, the subcommittee developed a process for collaborating on their report to the Tick-Borne Disease Working Group and voting on various actions and issues. The members also used email to organize their efforts and vote. The subcommittee's first milestone was to identify important issues and priorities related to Access to Care Services and Support to Patients that they then organized into key themes. The members volunteered to work in smaller groups, each of which was devoted to writing about one of the themes. Meanwhile, the subcommittee created a workplan to outline their approach to doing the work. Once everyone had written their sections, they were compiled into one document for review and revision. The group also met by phone to determine what Potential Actions to include in their report. They then voted on the Results section and submitted their final report to the Tick-Borne Disease Working Group. Results Note: Where not noted in the text, references are organized by topic in Appendix 1: References by Topic. Key Theme #1: Access to Care Services and Support - Past Issue #1: How did we get here? Background Access to care for Lyme and other tick-borne diseases is dependent upon a number of considerations. This includes the recognition of the disease, the recognition of the seriousness of the disease, the capability to diagnose the disease, the treatment capability, the education of a sufficient number of healthcare providers, the capacity to pay for the cost of assessment and treatment and the availability of adequate diagnosis and treatment for the general population. There have been challenges in all of these areas. It is particularly difficult to have access to care for a condition that some believe does not exist. The recognition of Lyme The recognition of Lyme and tick-borne diseases has followed a slow and convoluted path. Lyme is an ancient disease and the Lyme Borrelia has been found in 15 million-year-old fossilized ticks and in the 5,300-year-old Iceman in the Italian Alps. Josselyn stated that there was "an infinite number of ticks" in America in 1638. The disease was first described in Scotland in 1794. The erythema migrans rash was first described by Afselius in Sweden in 1909 and by Scrimenti in Wisconsin in 1970. Polly Murray drew critical attention to the disease in Lyme, Connecticut in 1975, and Willy Burgdorfer identified the causative agent. A number of highly defended conceptual errors occurred that delayed forward progress. These errors include statements such as these: Lyme disease is caused by a virus; Lyme is mostly a mostly arthritic disease. Lyme disease is treated with steroids. Short courses of antibiotic treatment are sufficient. Lyme disease is self-limiting; chronic symptoms are little more than the aches and pains of daily living. Chronic Lyme does not exist. The two-tier testing is accurate. There are no psychiatric manifestations. The geographical scope is very limited and the highly restrictive. Surveillance criteria can be used as diagnostic criteria. The recognition of the seriousness of the disease The position taken by policymakers focuses upon side effects of antibiotic treatments and antibiotic stewardship rather than the seriousness of the disease. In reality, Lyme and tick-borne diseases cause a significant number of deaths, disability, pain, and suffering. The capability to diagnose the disease The diagnosis of any disease requires a thorough clinical assessment, a knowledge of the best science available, clinical judgment, and a consideration of patient preferences. Due to the complexity of Lyme and associated tick-borne diseases, a proper assessment is labor intensive on the part of the examining physician. It is highly illogical to put excessive reliability upon any immune-based test when diagnosing an infection that is known to suppress and evade the immune system. Many of the lab tests covered by insurance companies are of poor quality while many of the more proficient labs are not covered by most private insurance companies. The treatment capability Borrelia is the most complex known bacteria and therefore requires a more complex treatment. Since there are many variables in coinfections, susceptibility, pathophysiology, and clinical presentations, it is very challenging to design proper studies to evaluate effective treatments of such a heterogeneous group. Two major treatment options are antibiotic treatments and therapies aimed at treating the symptoms resulting from the infection. Although rigid treatment protocols are advocated by some, they are ineffective; individualized treatments appear to be more effective. The education of a sufficient number of healthcare providers The complexity and controversy of the disease encourages many healthcare providers to attempt to avoid dealing with Lyme disease. Compounding the issue, some of the educational programs disseminate inaccurate information. This results in a shortage of healthcare providers who are willing and able to treat the disease. The capacity to pay for the cost of assessment and treatment Since adequate assessment and treatment requires a considerable amount of time and effort on the part of the treating healthcare professional, this adds to the cost of treatment. Insurance reimbursement systems do not make adjustments for the higher level of care needed by these patients. As a result, physicians who provide adequate care cannot function within the restraints of insurance company network requirements, and physicians who provide adequate care can rarely function within the restraints of insurance companies. Since insurance companies invariably use the lowest criteria for treatment, many of the antibiotics and other needed treatments are often not covered. This leads to the need for private pay for many of the necessary treatments, which many patients cannot afford, especially while they are disabled from the illness. The availability of adequate diagnosis and treatment for the general population It is difficult for all patients to understand how to access care for Lyme disease, regardless of their financial resources, but especially when they are suffering from fatigue, cognitive impairments, psychiatric symptoms and disability. The complexity, controversies, and costs involved in properly diagnosing and treating Lyme and other tick-borne diseases have made access to proper and affordable care available to very few. A greater recognition of Lyme and tick-borne diseases, a proper response to them, and improved access to care can help prevent unnecessary suffering, disability, death, developmental impairments, learning disabilities, mental illnesses, suicides, violence, general medical illnesses, and economic and non-economic costs (Bransfield, 2017; Bransfield, 2018a; Hamlen & Kliman, 2007; Johnson, Wilcox, Mankoff, & Stricker, 2014; Statlender, 2016; Zhang et al., 2006). Key Theme 2: Access to Care and Patient Support - Present Issue #2: What is the current state of access to care and which supports are available to patients & families? Advocacy Groups: What resources are available to patients and their families? State and Federal assistance programs (financial and treatment) Educational programs (free) Advocacy Groups: What resources are available to patients and their families? The idea behind an advocacy group or organization is to provide a voice for someone(s) who is otherwise not being heard. Sometimes advocacy occurs in the form of direct patient resources; other times it takes the form of legislation work or political and social activism. Advocacy groups are made up of current and former patients, their caregivers, family members, and friends, as well as community members who take an interest in the group's cause. These groups often come from a place of being victimized by their own personal health journey and pledge an allegiance to make change for others. Advocacy groups and the services they offer to patients and their families vary from group to group. Not all groups are alike or offer the same resources. Some are grassroots while others have official 501(c)3 status. Some focus on serving the needs of patients within their own state, while others focus on providing education and support to a national audience. Some advocacy groups exist solely to fund research or train medical providers. All these groups exist to change the status quo for the betterment of the patient. Direct patient resources can range from emotional and physical to financial assistance through support meetings, referrals to medical providers, and assistance to financial aid programs. Others focus on legislation, advocating for change at state and federal levels. Some groups provide community education raising awareness about tick-borne disease and prevention through local events, workshops, and conferences. State and Federal assistance programs (financial and treatment) Though many states offer free or reduced care programs to those that qualify, even with hardship programs in place, most of them do not cover doctors' visits or treatment for Lyme disease. There are, however, national organizations and companies that provide financial assistance for testing and treatment, again for those who qualify. The following is not a comprehensive list--please refer to individual resources for updates and applications. LivLyme Foundationwww.livlymefoundation.org The LivLyme Foundation supports children (ages 0-21) and their families by awarding annual grants to help pay for their Lyme medication and doctors' visits. Lyme Tap http://www.lymetap.com/ The Lyme Test Access Program is a nationwide patient assistance program that provide assistance for initial Lyme-related lab tests to patients who demonstrate true financial need. Lyme Lighthttp://lymelightfoundation.org Lyme Light provides financial assistance to anyone diagnosed with Lyme disease between the ages of 3 and 25 and who can demonstrate financial need. Lyme Aid 4Kidshttps://lymediseaseassociation.org The LymeAid 4 Kids (LA4K) fund began in 2004 and has helped children throughout the United States and Canada. Developed with the help of author Amy Tan, the fund is for children who do not have or receive insurance coverage for Lyme disease treatment for children and have economic difficulties. Donations can be made online to help LA4K as there are so many applicants, the fund does run out of money frequently. ClinicalTrialshttp://clinicaltrials.gov ClinicalTrials.gov is a registry and results database of federally and privately supported clinical trials conducted in the United States and around the world. ClinicalTrials.gov gives you information about a trial's purpose, who may participate, locations, and phone numbers for more details. This information should be used in conjunction with advice from health care professionals. GSK for youhttps://www.gskforyou.com GSK For You is a GlaxoSmithKline patient assistance program. It provides GSK prescription medicines-at no charge-to qualified patients who are enrolled in a Medicare Part D Prescription Drug Plan, as well as. low cost or no cost medications for non-medicare patients or people who do not have prescription coverage. It is a great program for Malarone and Mepron. Partnership for Prescription Assistance (PPA) https://www.pparx.org The Partnership for Prescription Assistance helps qualifying patients without prescription drug coverage get the medicines they need through the program that is right for them. Co-pay programs provide financial assistance for certain health care costs to patients who qualify financially and medically. PPA Discount Drug Card Programshttps://www.pparx.org/prescription_assistance_programs/savings_cards A list of many state and other "savings card" programs to help with cost of medications. Needy Medshttps://www.needymeds.org This is a Patient Assistance Program (PAP). PAPs are offered by pharmaceutical companies to help those most in need gain access to their medications at no or low cost. https://www.needymeds.org/medical-clinics This webpage, also part of Needy Meds, is specifically for those without insurance or who are unable to pay for a visit with a physician, NeedyMeds has compiled a nationwide list of free, low cost, and sliding scale clinics. Patient Advocate Foundation (Co-Pay Relief)http://www.copays.org The Patient Advocate Foundation (PAF) Co-Pay Relief Program (CPR) currently provides direct financial support to insured patients, including Medicare Part D beneficiaries, who must financially and medically qualify to access pharmaceutical co-payment assistance. Prescription Hopehttp://www.prescriptionhope.com/ Prescription Hope is program that helps people get prescriptions at a much lower price. RxAssisthttp://www.rxassist.org Patient assistance programs are run by pharmaceutical companies to provide free medications to people who cannot afford to buy their medicine. RxAssist offers a comprehensive database of these patient assistance programs. Rx Hopehttps://www.rxhope.com RxHope offers a helping hand to people in need of critical medications that they would normally have trouble affording. They act as your advocate in making the patient assistance program journey easier and faster by supplying vital information and help. Financial Assistance for Lyme Disease Patientshttp://lyme.kaiserpapers.org/financial-assistance.html Educational programs (free) Many advocacy groups host educational events, bringing in speakers that offer expert educational presentations on diagnosis and treatment and exhibitors that offer products and services that serve the needs not only of the patient but of the community at large. Often times, these events are free to all who attend. Patients and providers can learn about cutting-edge diagnostic tools as well as testing and treatment options. They can network with medical providers to receive free advice and direction. Many state and national advocacy groups, nonprofit organizations, and associations offer educational information on their websites. TickTracker.com, a free global app, has the largest collection of tick bite photos, rash photos, and worldwide mapping of ticks. With the data it collects, TickTracker.com will be able to see tick migration and outbreaks and help warn the public. It will also be used for scientific research. TickTracker.com is a program of the nonprofit, LivLyme Foundation. Key Theme 3: Awareness & Education - Public & Patients Issue #3: Public Education Advocacy Organizations Workshops Educational events Conferences Media coverage - what's being promoted or downplayed Schools Public Education Empowering individuals to prevent tick borne illness requires dissemination of information through many channels. Among the most obvious and accessible are schools. As aptly stated by the Bay Area Lyme Foundation, "Educators are a vital first line of defense against the spread of Lyme and other tick-borne diseases." The Bay Area Lyme Foundation website provides free access to rich, matter of fact, and up-to-date curriculum for teachers, outdoor educations, science teachers, health educators, students, and parents. Many advocacy groups and organizations are taking tick-borne disease education to the mainstream public, hosting local community education events and conferences with speakers and exhibitors, organizing workshops for medical providers and mental health clinicians to help bring awareness of tick-borne disease update-to-date. Many of these organizations are the mouthpieces for research, sharing publicly the latest diagnostic tools and treatment options along with newly discovered strains of tick and vector-borne diseases. These groups share patient stories as well as their own in hopes of conveying the importance of prevention practices and direction on what to do if bitten by a tick. Too many medical providers buy into the wait-and-see approach when research has shown that some tick-borne diseases are transmitted in less an hour. Raising awareness with up-to-date information arms the public and allows them to make informed decisions about their health needs. Educating the public is multi-faceted, from how to look for ticks to how to remove a tick correctly. The public needs information about what symptoms to look for, where to send ticks for testing, how and where to seek a medical provider who is knowledgeable about tick-borne diseases, the challenges associated with testing, knowing what test to ask for and what treatment options exist, and how to obtain the correct knowledge in dealing with a tick-borne disease. In August of 2013, the Centers for Disease Control (CDC) released a press release stating that they had grossly underreported the new cases of Lyme Disease by 10-fold: their report of 30,000 new cases per year was corrected to 300,000. In this same press release, they referred to Lyme Disease as the fastest growing infectious disease. "We know that routine surveillance only gives us part of the picture, and that the true number of illnesses is much greater," said Paul Mead, M.D., M.P.H, chief of epidemiology and surveillance for CDC's Lyme disease program. "This new preliminary estimate confirms that Lyme disease is a tremendous public health problem in the United States, and clearly highlights the urgent need for prevention." According to the CDC, children ages 5-14 are a high-risk population. Tick-borne disease curriculum is being written and integrated into many endemic states' educational plans, educating children with age appropriate material and school educators and nurses on prevention and awareness of exposure. Educational interventions to reduce Lyme disease (LD) among at-risk school children have had little study. However, a 2016 study was published in the PMC, U.S. National Library of Medicine, National Institute of Health called "A School-Based Intervention to Increase Lyme Disease Preventive Measures Among Elementary School-Aged Children." The study found that a short in-class educational program that includes elements of the Health Belief Model (HBM), including: (1) awareness and knowledge about the disease, (2) benefits of preventive behavior, and (3) confidence in ability to perform preventive behaviors can improve knowledge, attitude, and self-reported precautionary behavior among at-risk children. In 2008, a CDC funded Lyme Disease Prevention Curriculum program at Brigham and Women's Hospital, the open paragraph states as follows: "Lyme disease incidence continues to increase despite the growing knowledge of how to prevent it. The description of Lyme disease in 1976 and subsequent characterization of its mode of transmission, causative organism and treatment is one of the most remarkable advances in medicine in the last 25 years. Nevertheless, Lyme disease continues to grow as a public health problem. While Lyme disease affects all age groups, children have one of the highest rates. Prevention remains a challenge in this group." Provider Education Tick-borne disease (TBD) symptoms are often attributed to mental health conditions and may result in referrals to mental health providers. Patients experiencing TBD neuropsychiatric and cognitive symptoms may self-refer to mental health providers. While mental health professionals might provide some comfort in the face of their suffering and assist them in strengthening their ability to cope with the emotional pain, loss, changing functioning, roles and distress, psychotherapy/counseling will not result in the treatment of the underlying illness. Education in medical causation for mental health conditions is not a standard dimension of training for non-medical mental health care providers. In a study published in the Primary Care Companion Journal of Clinical Psychiatry, it was reported that medical doctors, primary care, and psychiatrists, were three times more likely to identify underlying medical illnesses contributing to mental health symptoms, such as mood concerns, behavioral symptoms, and anxiety, than non-medically trained mental health providers. (See Appendix 4: The "Lyme-Literate Mental Health Evaluation") Failure to identify a covert medical illness such as a tick-borne disease inadvertently contributes to the patient's delay in receiving a correct diagnosis and treatment, which can have dire consequences. Further, well-intentioned, yet uninformed clinicians may play a role in the diminished sense of agency on the part of the patient, as interventions do not result in amelioration of their symptoms. Potential Actions Provide education regarding prevention and recognition of tick-borne diseases, ticks, tick bites and how to remove a tick correctly. Audience-specific messaging and outreach. The audience includes but is not limited to the following groups: Schools (all levels), Nurses/ Clinics, Primary/Family Care Physicians, Rural Family Physicians, Emergency Room Doctors, Infectious Disease Doctors, Mental Health Professionals, Specialist Doctors, Summer Camps for kids, FireFighter, First Responders, Police, NCAA, Athletic Coaches/ Program, Park/Wildlife Employees, Hunters, Native American tribes and populations, Underserved populations, including racial minorities. Have a more comprehensive and interactive website at the federal level; app/technology (e.g. TickTracker.com) Federal government to include TBD curriculum in the school system, especially in endemic regions Treat Lyme and other tick-borne diseases as chronic illnesses. Even without definitive or settled science determining the exact cause, there is agreement on all sides that debilitating symptoms linger for up to 20 percent of Lyme disease patients. The approach for other chronic conditions is to address and manage the medical, social, economic, and psychological challenges faced by those with chronic conditions or chronic symptoms. Lyme and tick-borne illness should be no exception. Issue #4: Legislation Laws to promote patient rights Laws to protect physicians Legislation All too often, legislation for patient rights for access to adequate diagnostic and treatment options as well as protection for physicians falls upon the patients and their families. In endemic states, where providers treat the patients until they are better, these medical providers fall prey to attacks from other medical providers who feel they are compromising the health of the patient. When the Infectious Disease Society of America (IDSA) wrote their guidelines for treating Lyme Disease, they included a footnote that read as follows: "These guidelines were developed and issued on behalf of the Infectious Diseases Society of America. It is important to realize that guidelines cannot always account for individual variation among patients. They are not intended to supplant physician judgment with respect to particular patients or special clinical situations. The Infectious Diseases Society of America considers adherence to these guidelines to be voluntary, with the ultimate determination regarding their application to be made by the physician in the light of each patient's individual circumstances." And yet, medical providers have faced disciplinary action and fines from state licensing boards because they choose to determine the direction of their patients' treatment based on individual circumstances and treatment responses. So, it falls on each state to produce legislation to promote public awareness and protection for patients and providers. Physician protection laws afford licensed providers the right to diagnose and treat Lyme disease according to clinical criteria (MA legislation "Administration of long-term antibiotic therapy upon diagnosis of Lyme Disease"). https://malegislature.gov/Laws/GeneralLaws/PartI/TitleXVI/Chapter112/Section12DD Lyme disease treatment coverage insurance mandates, which require insurance coverage for treatments based on clinical diagnoses and criteria, when made by licensed providers (MA Legislation "An Act Relative to the Long-term Antibiotic Therapy for the Treatment of Lyme Disease") https://malegislature.gov/Laws/SessionLaws/Acts/2016/Chapter183 The language must be careful and precise in this legislation, to assure that it remains true to its intent. With this in mind, the following terms are defined as follows: Long-term antibiotic therapy: The administration of oral, intramuscular or intravenous antibiotics singly or in combination, for periods of time in excess of 4 weeks, as defined by the physician protection legislation. Lyme disease: The presence of signs or symptoms compatible with acute infection with Borrealia burgdorferi; or: Late stage, persistent or chronic infection w/B. burgdorferi; or: Complications related to such infection; or: Other strains of Borrelia that become identified or recognized In Maine, (1) legislation was passed (LD 1709) requiring a report to be written every year for public awareness with the status of tick-borne disease surveillance and tick-borne disease case counts every year; (2) legislation was passed (LD 597) acknowledging the difficulty in diagnosing and treating Lyme Disease along with information on risk of long term antibiotic therapy; (3) legislation was passed (LD422) to improve access to treatment for Lyme Disease, allowing a medical provider to prescribe, administer, or dispense long-term antibiotic therapy to eliminate infection or control a patient's symptoms. The following website provides a list of states that have patient and provider legislative concerning diagnosing and treating Lyme and tick-borne disease: https://lymediseaseassociation.org/category/about-us/lda-programs-a-achievements/government/ Federal legislative efforts: https://lymediseaseassociation.org/category/federal-legislation/ Potential Actions Mandatory insurance coverage Enforcement existing laws Laws to protect patients' rights, including informed consent regarding the two published standards of care for Lyme disease. Laws to protect physicians who wish to treat according to clinical criteria and/or ILADs guidelines. Implement federal demographic reporting. Include a Lyme/Tick-borne Disease checkbox on health forms within the federal government to gather accurate date about prevalence, health impact, and cost of tick-borne diseases. Include a checkbox on medical intake forms within government healthcare institutions and programs including but not limited to: Veterans Health Administration (VHA), National Cancer Institute (NCI) Hospitals, Other NIH health facilities, Federally funded health care Centers of Excellence, Medicare, Medicaid, State Children's Health Insurance Program (SCHIP), Indian Health Service (IHS), CHAMPUS, DOD, TRICARE & others. Hold Congressional hearings to gather data and correct Lyme public health and human rights issues. Legislative oversight and investigative hearings or some combination of hearings may be critical to correct the public health and human rights issues facing tick-borne disease patients: Legislative Hearingsprovide a forum where facts and opinions from witnesses and stakeholders from varied backgrounds are presented prior to considering legislation. Investigative Hearings provide a legislative remedy to address problems especially if there is a suspicion of wrongdoing on the part of public officials. Oversight Hearings review or study current law, issues and activities while focusing on the quality of federal programs. Efficiency, economy and effectiveness of government operations are scrutinized. Adapting Maryland's "Patient Information Disclosure Act" as a model for legislation-notifies patient when any diagnostic test is performed that lack a high level of reliability (not necessarily restricted to Lyme testing). Federal government--Extend to Medicare and ERISA law Issue #5: Patient Education Recognizing that they have a tick-borne disease Having current information to work with Knowing where to find the resources in their own state Through education and awareness about Lyme and tick-borne disease, patients and the community at large are taught the differences between tick-borne diseases, what disease certain ticks are known to carry, and how to recognize signs and symptom. Many public health offices dissemintate information about ticks and prevention but continue to share outdated information on transmission times and prophylactic dosing that continues to put the patients in harm's way. Medical providers are not known to give out information regarding support meetings and resource to their Lyme disease patients like they would a cancer or diabetes patient. Advocacy groups and organizations continue to be the front runner in sharing that information directly with patients and the public. Not all ticks are going to transmit Lyme disease (Borrelia burgdorferi), which is known to present with the classic bulls-eye rash. Educating what other tick-borne diseases exist in the area and how they present will empower a patient to recognize signs and symptoms and seek medical attention when needed. Potential Actions Add existing resources to state public health pages and Behavioral health associations Use Public Service Announcements to educate people Have pamphlets available at doctors' offices (tick removal, availability of tick testing, etc.) in very patient-friendly language-outline symptoms Educate that patients can present with any number of symptoms and in differing intensity, advise of many different types of rashes Dispel myths and promote reality, update (and keep up-to-date) information that is promoted to provider and the public Issue #6: Provider Education Primary Care Physicians Specialty Care Physicians Mental Health Professionals Lyme Literate Workshops (peer-to-peer training) ILADEF Free Physician CME modules (See lymecme.info below - Dr. Betty Maloney) The following is a list of organizations that offer comprehensive training programs to further a medical provider's knowledge on the complexities of diagnosing and treating Lyme and Tick-borne diseases: International Lyme and Associated Diseases Society Educational Foundationhttp://www.ilads.org/education/physician-training.php Global Lyme Alliancehttps://globallymealliance.org/education-awareness/physicians-training-program/ Global Lyme Alliance provides CME-accredited educational programs for healthcare professionals to learn more about diagnosing and treating Lyme and other tick-borne diseases. Partnership for Tick-borne Diseases Education (PTDE)https://www.partnershipfortick-bornediseaseseducation.org/ PTDE develops and makes evidence-based educational modules available to medical professionals regarding tick borne diseases for CME credits. LymeCMEhttps://www.lymecme.info/ LymeCME offers free, AAFP-accredited courses for physicians Partnership for Healing and Health (PHH) https://www.partnershipforhealingandhealth.com/about-us/ PHH is a medical information company dedicated to bringing reliable scientific and medical information to the attention of the general public, employers and healthcare professionals. PHH provides accredited CME programs on Lyme disease for physicians and other health professionals as well as Lyme disease education and training programs for private organizations and government agencies. Potential Action Formal physician education on tick-borne diseases, starting in medical school and including behavioral health-associations, nurses, family nurse practitioners, Physician Assistants, Certified Nurse Assistants Key Theme 4: Access to Affordable Medical Care Issue #7: Federal & State Government Barriers Dogma Negative/Improper usage of CDC surveillance criteria (never intended for clinical diagnosis) IDSA vs ILADS:Two Standards of Care Guidelines vs Standards of Care Federal influenceson States Grants (facilities who rely on grants follow orders from above) StateLicensing Boards (physician fear of disciplinary action) Potential Actions Revert back to 2011 language on the CDC website (for language, see p. 54 of Results doc) Post ILADS guidelines on CDC website Draw attention to footnote on the IDSA guidelines Allocate more balanced funding for Lyme and tick-borne diseases to match communication Establish tick-borne disease centers of excellence (Centers of Excellence already exist to serve patients facing serious health and public health challenges ranging from autism to cancer to minority health disparities) Hold a Congressional hearing about tick-borne diseases Potential Action Seven: Allocate increase funding for tick-borne disease in the area of research, treatment and prevention (Highlight the disproportionate funding for Lyme vs. cancer, HIV/AIDS) Protection from job discrimination due to Lyme and TBDs Protection for students of all ages from discrimination due to Lyme and TBDs Increase Research Funding Through Department of Defense Congressionally Directed Medical Research Program (DOD CDMRP). Research grants through the DOD CDMRP benefit both the military and civilian populations. CDMRP investigator-initiated awards for tick-borne disease research promote a wide range of research from basic through translational, including studies in animals and humans. These awards fund rigorous, high-impact studies that have the potential to significantly improve diagnosis, treatment and prevention of tick-borne diseases. [The unique structure of the DOD CDMRP allows it to be more flexible than traditional competitive peer-reviewed medical research programs. As the Institute of Medicine states in its reviews, "the program fills a unique niche among public and private funding sources." In addition, due to the program's flexibility, DOD is able to administer it with great efficiency and little bureaucracy. This means 90% of the funding goes directly to competitive peer-reviewed research grants. Finally, educated, trained consumer advocates participate in a process where research proposals are reviewed for scientific quality and program relevance, thereby engaging the public and helping to ensure transparency]. Issue #8: Insurance Blocks Denying services/treatment-based on IDSA criteria Out of Pocket expenses to patient Disability cost on the economy Lifetime cost for chronic illness (testing/treatment/support) An obstacle to affordable care is the managed care/HMO system. The majority of doctors referred to as "Lyme-literate" are not a part of managed care systems, thus inaccessible to patients who need to obtain care within their provider group. Those who have resources to seek care outside their HMO, or who are covered by preferred provider medical insurance plans, may seek treatment from a Lyme-literate doctor. However, Lyme-literate doctors most often do not direct bill insurance companies, leaving the patient to pay for care out of pocket, sustaining higher co-pay, and submitting claims to the insurance companies for reimbursement. Attempts to claim reimbursement for services are fraught with detours and often arrive at a dead-end, without reimbursement being received. Initial rejection of claims is common, followed by long hold times on the telephone attempting to get assistance from the insurance carrier, cumbersome documentation, and required resubmission of claims. Obstacles presented by insurance companies include long periods of awaiting authorization for treatment and prior authorization for specialized medications not on the general formulary. This delay in treatment can have detrimental impact on the healing process of the patient. When patients are severely ill, some with neurological issues, managing the reimbursement, claims, and appeal processes is grueling. The necessary sustained tenacity, tracking and recordkeeping, and potential additional costs are often not possible for persons who are facing a multitude of symptoms which may include neurological processing deficits and exhaustion. Without an advocate or family member to assist, patients sometimes report "giving up," feeling that they are not capable of fighting the battle for reimbursement concurrent to fighting for their health. This further contributes to their financial vulnerability and may obstruct their ability to obtain the doctor-recommended treatment. Potential Actions Insurance to cover Lyme treatment and limited Lyme testing Streamline reimbursement process for patients Streamline patient/doctor PA/appeal process Include mental health coverage Issue #9: Underrepresented & High-Risk Populations Children Low Income Mental Health patients Native Americans Military Service Members, Military Families, and Veterans Migrant Workers Pregnant Women Elderly Children Demographic data indicate that children are one of the highest risk groups for contracting tick-borne diseases. Families may be especially hard hit when more than one child is ill due to higher medical costs and time lost at work for caregiving. The stress that these children and their families experience is enormous. In addition to the need for financial resources, there is tremendous need for enlightened academic services and accommodations for children in the schools. Students with tick-borne diseases are at risk for cognitive impairments which may include visual and auditory processing disturbances, slowed processing speed, difficulty with working memory, executive functioning, and more. When the underlying infectious illness is unrecognized or poorly understood, students are at risk for misdiagnosis with a primary psychiatric disorder or learning disability, including attention deficit disorder, school or social phobia, oppositional defiant disorder, and more. These misdiagnoses overlook or ignore critical symptoms such as pain, fatigue, sleep deprivation, sensory sensitivities, processing issues and more, each of which may impair attention and impede academic progress. The unpredictable course of the illness, including day to day fluctuations in its symptoms, challenge the typical service plans in place for students with learning disabilities, or with illnesses which have a more predictable course or defined endpoint. School field trips into Lyme-endemic areas and playgrounds place children at risk for contracting Lyme disease. Prevention and awareness measures must be implemented in these situations, including but not limited to appropriate notification and balanced information regarding risk and prevention provided to parents. Students with Lyme disease all too often face the added burden of needing to convince the school authorities of the reality and credibility of their ongoing illness. They require flexible attendance policies without fear of truancy charges. Existing models of accommodations provided in 504 plans and IEPs often are not suited for children with TBD. Current educational systems may present the options of "attend or don't attend;" home teaching or school attendance. Hybrid and creatively designed plans are necessary to provide opportunities for the richest and most "normal" growth and development for children who are, by no fault of their own, faced with a childhood riddled with myriad symptoms which compromise their ability to fully engage in mainstream education. Socialization is an essential part of the process of child development and a crucial element of human well-being. Punitive measures can be enforced such as disallowing students to attend after school activities if they have not attended school. As TBD symptoms wax and wane, even over the course of the day, excluding children from meaningful socialization with their peers is punishing, isolating and intensifies the emotional pain and loss for these children. Further, the longer a young person is at home and outside the peer environment, the more difficult it may be to re-enter. This isolation may result in unintended social and emotional consequences that compound the challenges the young person faces. TBD, with all of its clinical and physiological complexity, creates a ripple effect of devastation beyond the patient's body into every arena of his or her life. In part determined by the timing of diagnosis, access to and effectiveness of treatment, and the severity of symptoms, the patient's life trajectory is severely disrupted. Among the myriad losses is one's role in the community, school, work, and within the family. This may be true not only for the patient, but family members as well as they pull back from social activities, abandon career or school plans, eliminate hobbies and place other relationships on hold to become caregivers, advocates, case managers, educators, negotiators, researchers, transporters, record keepers, emotional supporters, spiritual guides and errand doers. Finances become strapped. Families and patients talk about selling or taking loans out against their homes, reducing the family to one car, in two-parent families one parent giving up their job or interrupting their career, and abandoning planning of all kinds as the needs and condition of the patient is unpredictable day-to- day. Other family financial priorities are set aside to pay for uncovered care. Relationships may become strained. Spouses become caregivers. Divorces occur. Well children feel marginalized and may work to be the ideal child, become invisible, or compete for attention. Friends fall away. Isolation, which is, in and of itself, a public health issue becomes a significant contributing factor to the overall quality of life and well-being of the individual and family. The health impact on caregivers is well documented. In 2003 a review of 23 studies involving 3,072 participants, psychologist Peter Vitaliano, PhD, and his found that care givers, compared to non-care givers had a 23 percent higher level of stress hormones and a 15 percent lower level of antibody responses than non- caregivers, thus rendering them more vulnerable to infections, increasing the risk of high blood pressure, glucose levels, hypertension and diabetes. Other studies demonstrate higher levels of depression amongst caregivers and that the immune system continues to be compromised years after the care giving has ceased, thus contributing to the onset of chronic illness in the caregivers and the resulting costs. This calls out the need for care giver support, not only to relieve their suffering, but to reduce the cost to society as a whole, precipitated by the compounding illness, job loss, loss of the ability to prepare for retirement, depletion of educational accounts- the list goes on. Every member of a family is affected, and the family's quality of life as a whole is radically impacted. A study published in the International Journal of General Medicine reveals that the experience of chronic and life-altering illness on the family is profound, having great impact on the relationships, finances, employment, emotional well-being. Spiritual and existential distress is often an integral part of this experience, as well. It follows that the family quality of life is a dimension of health care which has been neglected and needs to be addressed to provide support for both the patient and family unit. Complicated grieving can be a result of the tremendous loss which occurs in all arenas of a person's and family's lives. For patients with TBD, this disruption to the psychosocial aspects of the patient and family is multiplied by the societal context of controversy and confusion, in which Lyme disease occurs. Client stories replete with tales of mistreatment by disbelieving health care providers whom they once trusted, the misapplication of psychopathological diagnoses, the stigmatization of chronic Lyme as hypochondria or categorized as medically unexplained symptoms, the alienation of members of one's support system converge to create a non-supportive to hostile environment in which the patient is struggling to address severe illness and survive. As such, it is not an optimal healing environment. When combined with tremendous and widespread loss, financial and medical survival concerns, disabling and traumatizing symptoms, the result may be medical trauma and, in some cases, the development of PTSD, secondary to the societal and elements of the medical communities' response to persons with TBD. There is extensive research which demonstrates the impact of trauma and a stressed autonomic nervous system has on health and healing. The suggestion that medical treatment can be traumatic seems antithetical to the Hippocratic Oath and our cultures' historical, deep and abiding respect and trust in medical professionals. However, TBD patients report significant and repeated experiences with medical staff which are experienced as disrespectful, confrontational, and deeply distressing. Patients talk about the stress of needing to obtain medical care from providers who do not believe them, do not see their suffering as real, and who hold the power in terms of access to medical care. This can result in symptoms of medical trauma (avoidance, anxiety, intrusive memories, intense emotions or numbing, hyper-vigilance) and impact the patient's sense of safety and optimism for treatment which can lead to improvement in their health status. Children are more vulnerable to the impact of disbelief, and parents report stress and anxiety, struggling to maintain employment and parent their other children, while advocating for services, and at the same time trying to protect their child from systems and experiences which threaten further harm. A patient whose functioning is dramatically compromised or whose choices are dictated by geography or their HMO, may not be able to simply leave one provider or institution to find another more responsive provider/system. The illness itself can prevent self-advocacy. Persons who do not have a family member or friend to assist with coordination of care, research and advocacy are severely limited in their ability to secure appropriate medical intervention, which may lead to a sense of hopelessness and desperation. Plummeting financial security and lost earning potential has resulted in homelessness for some patients. Parents have been reported to child protective agencies; some have been accused of Munchausen Syndrome by Proxy (MSBP) and have had to defend themselves in court. Schools must adopt an enlightened, informed approach for dealing with students and their families who suffer from TBDs. This will promote a productive collaboration and avoid the adversarial relationship which might otherwise develop, enabling them to fulfill their obligation to provide a free and appropriate public education (FAPE) to students with TBDs. In terms of legal protections, 504 plans and IDEA special education law may be utilized to develop appropriate, individualized education plans (IEP's). Mental Health Patients Thousands of articles show a causal association between infections and mental illness, and 400 articles support the causal association between tick-borne disease and mental illness. These include but are not limited to depression, anxiety, bipolar illness, cognitive impairments and psychosis. Dr. Robert Bransfield and others have addressed the immunological, neurological, and mechanisms by which the Lyme bacteria, Borrelia burgdorferi (Bb), may cause neuropsychiatric symptoms. Given unreliable diagnostic testing, physicians who fail to identify a medical explanation for a patient's physical symptoms may erroneously attribute them to emotional factors; in such cases, misdiagnosis with anxiety or somatization is not uncommon. Patients who experience Lyme-induced neuropsychiatric symptoms are particularly at risk for misdiagnosis with a primary psychiatric disorder. This results in inadequate medical treatment, and also adds to the patient's distress and despair. Many of these patients bounce between hospitalizations in psychiatric and medical facilities, with little appreciation of the infectious etiology of their neuropsychiatric symptomatology. This disrupts continuity of care and results in a fragmented approach to complex, multi-systemic illnesses. There is a need for dual diagnosis inpatient units equipped to treat patients with infection-induced neuropsychiatric symptoms. Patients with neuropsychiatric symptoms also may experience an exacerbation of these symptoms as part of a Jarisch-Herxheimer or die-off reaction; these may include increased depression, suicidality, anxiety, agitation, cutting, cognitive confusion, aggressive behavior and more. Here again, is essential that practitioners understand the etiology of such symptoms, both in order to implement appropriate support services, as well as to ensure continuity of care with regard to the medical treatment. Inadequate access to care for Lyme/tick-borne diseases has serious implications and results in fatalities, a broad spectrum of psychiatric and general medical illness, impairment, disability, presenteeism, absenteeism, lost productivity, caretaker burden economic losses and suffering. Psychiatric fatalities area a result of suicide (1200/year in US), drug overdoses and homicides. Inadequate access to treatment for chronic psychiatric symptoms and chronic pain has contributed greatly to an epidemic of opioid and other substance abuse and deaths in this country. Access to care barriers are further compounded by pharmaceutical benefit management companies that create formularies that obstruct access to less addictive treatments and have step therapy policies favoring he use of the more addictive generic opioids and benzodiazepines which strongly influences prescribing patterns. Other neuropsychiatric fatalities are a result of congenital Lyme infections, Lyme meningitis, symptomatic late Lyme neuroborreliosis, late Lyme neuritis or neuropathy, meningovascular and neuroborreliosis with cerebral infarcts, intracranial aneurysm, late Lyme encephalitis, late Lyme meningo-encephalitis or meningomyelo encephalitis, atrophic form of Lyme meningo- encephalitis with dementia & subacute presenile dementia. Somatic fatalities are a result of Lyme nephritis, Lyme hepatitis, Lyme aortic aneurysm, coronary artery aneurysm, late Lyme endocarditis, Lyme carditis, late Lyme disease of liver and other viscera, late Lyme disease of kidney & ureter and late Lyme disease of bronchus & lung. Other countries often follow United States healthcare policies regarding Lyme disease. Effective polices have positive benefit on global health while flawed policies can have catastrophic effects upon access to care. The need for a coordinated, multidisciplinary treatment team approach must include education and training for mental health professionals regarding the full spectrum of symptoms possible with Lyme disease. One effort in this regard has been an annual conference from 2010-2016, sponsored by the Lyme Connection, the Leir Charitable Trust Foundation and the Lyme Disease Association, Inc. Presenters have included Lyme disease medical specialist Kenneth Liegner, M.D., psychiatrist Robert Bransfield, M.D., neuropsychologist Judith G. Leventhal, Ph.D, clinical psychologist Sheila M. Statlender, Ph.D. and social worker Sandra Berenbaum, L.C.S.W., all of whom have had extensive experience treating patients with tick-borne disease in their practices. This group has presented a similar conference at Bryant University in Rhode Island. (See Appendix 4: The “Lyme-Literate” Mental Health Evaluation.) In summary, patients with infection-induced neuropsychiatric symptoms are at risk for misdiagnosis with a primary psychiatric disorder. Familiarity with the full spectrum of symptoms possible with tick-borne diseases is essential in order to provide these patients with an effective, multi-systemic treatment approach which recognizes the underlying infectious etiology. Native Americans The federal government is obligated by law to provide medical care to American Indians and Alaska natives through the Indian Health Service (IHS), an agency of HHS. Many are considered to be low-income and dependent upon Medicaid for their healthcare. The IHS is chronically under-funded, and on reservations, HIS facilities often do not have services that people elsewhere commonly expect. Moreover, they are often hours away by from the patients who need their services by car. Those limited facilities can be hours away by car. Military Service Members, Military Families, and Veterans Members of the military (active duty) and their families are at a distinct disadvantage because they struggle to maintain consistency with primary care providers. Because the military is under-resourced and under-manned (across the board including medical providers), many military service members and their families do not receive consistency of care over time with the same provider. Continuity of care is vital to accurately diagnosing and adequately treating chronic Lyme and tick-borne diseases. Military medicine is well suited for acute, easy-to-diagnose illnesses, injuries, and infections. It is not well suited for chronic or complex conditions because both families and medical providers are regularly deployed and moved to different locations. Military members, their families and by extension, our veterans are the most high-risk population due to exposure of global species and strains of tick-borne disease. In the case of veterans, they may be medically separated and/or retired people with undiagnosed or misdiagnosed diseases. Unless they hit the twenty-year pension mark, which allows them more choice in the medical providers they want to see, veterans are dependent on Veteran's Administration's healthcare. As such, they are subjected to the same federal guidelines for diagnosing and treating tick-borne illness that are being called into questions by this subcommittee. Hispanic Populations Hispanics compromise 43.6% of grounds maintenance workers and 43.4% of workers in farming, forestry, and fishing industries, leading to higher rates of exposure to ticks, and potentially tick-borne diseases. Compared to non-Hispanics, Hispanics displayed signs of disseminated infection and symptoms onset during the fall at a significantly higher rate. Placing this population at further risk, only 58.5% were reported as having health insurance during the 2009 to 2013 period compared to 84.9% of non-Hispanic whites. Moreover, 15.5% of Hispanics studied reported not seeking or delaying medical intervention. Migrant Workers Due to outdoor working habits, with limited or no healthcare, migrant workers have a high-risk exposure to tick-borne diseases without the means for adequate diagnosis and/or proper treatment. Pregnant Women Gestational tick-borne disease is transmitted to unborn children in utero and has the potential to cause premature labor and fetal death. Potential Actions For healthcare provision to be available across demographics Educational materials in multiple languages Required that entities that take federal money to provide education Ob/Gyn TBD training for potential gestational transmission during pregnancy Key Theme 5: Access to Proper Diagnosis & Treatment Issue #10: Proper Diagnosis & Proper Treatment Physician knowledge Acute vs Post-Treatment Lyme Disorder vs Chronic Late stage Lyme neuro-psychiatric symptoms Exploitation of patients with costly and extreme treatments A willingness to treat until better (remission) Affordable and reliable diagnostic tools All tick-borne illness including strains and species, sensitivity and specificity across the board Proper Diagnosis, Treatment, and Informed Consent Chronic Lyme disease patients have significantly impaired quality of life and greater healthcare utilization compared to the general population and patients with other chronic diseases. Forty percent of those with chronic Lyme report being unable to work due to Lyme disease, and twenty-four percent of patients with chronic Lyme disease report being on disability at some point in their illness. Lyme disease patients frequently experience significant delays in diagnosis and treatment. These combined factors underscore the tremendous need for earlier diagnosis and innovative treatment approaches. Ideally, practice guidelines enable physicians to draw on the best evidence-based medicine (EBM) to provide proper treatment. However, the guideline development process can be imperfect. A study of the guidelines of the Infectious Diseases Society of America (IDSA) found that only one in seven of their guideline recommendations was based on strong evidence. The National Guidelines Clearinghouse (NGC) lists twenty-five medical conditions with conflicting guidelines. EBM is the integration of clinical expertise, patient values, and the best research evidence into the decision-making process for patient care. With respect to Lyme disease, however, the scientific evidence base regarding treatment is lacking. Only three NIH funded randomized controlled double-blind studies exist, and each of them utilized very small sample sizes. These studies yielded conflicting results regarding the value of extended antibiotic treatment, but two found improvement in levels of fatigue. Several observational trials do support further treatment but are discounted by the IDSA. Under these circumstances, who decides the appropriate course of treatment for the patient? The IDSA contends that the existing evidence base is too weak to warrant intervention beyond twenty-eight days of antibiotic treatment. The International Lyme and Associated Diseases Society (ILADS), on the other hand, contends that, given the very poor quality of life for patients with Lyme disease, the evidence is strong enough to support treatment. ILADS has published Lyme disease treatment guidelines which adhere to the Grading of Recommendations Assessment, Development and Evaluation (GRADE) system as its basis for evidence assessment and the development of recommendations; this is the system recommended by the Institute of Medicine to ensure a transparent and trustworthy guideline process. These published guidelines are posted on the National Guidelines Clearinghouse. Currently available diagnostic tests are unable to monitor treatment progress or demonstrate eradication of the disease. Even the IDSA, whose Lyme disease treatment guidelines are most frequently utilized by health insurers to determine coverage, notes that “guidelines cannot always account for individual variation among patients. They are not intended to supplant physician judgement….” In spite of this, mainstream dogma has continued to promote a model of Lyme disease based on unreliable diagnostic testing and an arbitrary end point for antibiotic treatment. Inappropriate use of surveillance criteria, the absence of a strong clinical definition, the presence of co-infections and health insurers utilizing problematic criteria to restrict coverage has negatively impacted proper diagnosis and treatment in the clinical setting. EBM only works when you have scientific evidence; however, lacking evidence or in light of conflicting evidence, the reliance of clinical judgement and patient values becomes all the more critical. Each of these factors has negatively impeded patient support and access to care. The legal doctrine of informed consent requires physicians to inform patients of existing treatment options, their probable outcomes, and the risks and benefits associated with each. For a patient who may be too ill to work or to attend school, the potential benefits of treatment may well outweigh the risks. It is essential that patients be provided informed consent, together with the authority to decide which of the available treatment options they wish to follow. In keeping with this, health insurance companies must be required to provide coverage for those treatments, as has occurred through legislative action in several states, including Massachusetts, Rhode Island and California. Potential Actions Funding research to lead to accurate diagnosis and treatment of all stages Better physician training – med schools, especially endemic areas Include tick-borne disease education with mental health training Introduce Informed Consent Form into medical visits. (See Appendix 3: Informed Consent for Treatment of Persistent Lyme Disease.) Issue #11: Affordable treatment options Insurance blocks (denying services/treatment) Mainstream and Alternative options covered Long-Term Recovery & Support Physical & Occupational Therapy Potential Actions Update coding – currently for acute, need for chronic and co-infections Expand insurance coverage for complimentary/alternative visits and treatment options (such as but not limited to PT/OT, reiki, acupuncture) Summary of the Access to Care and Support to Patients Subcommittee Report to Working Group In the weeks and months that we have met, we have taken all the key themes and issues identified barriers to patients accessing care services and support and summarized our priority issues that we present to you here today. We have also recognized services currently available to patients at both a state and national level. It is our hope that you will review our concerns and accept our potential action items as you move forward with your report to Congress. Where Can We Improve? Provide affordable and accessible healthcare service to reduce the incidence of preventable diseases, promote early detection and diagnosis of these diseases at the stage when they are most easily treated, and reduce mortality and morbidity of chronic disease. If people cannot afford the services or if the services do not exist within a reasonable travel distance, patients will forego treatment and run the risk of chronic illness and disability. For children, this negatively impacts their academic progress and their parents may lose time at work, causing further economic hardship. Address educational gaps: This requires familiarity with the signs and symptoms of tick-borne disease (TBD), including both Lyme and co-infections, and knowing when to seek help, as well as information regarding the unreliability of available diagnostic testing. Assist with finding providers familiar with the complexity of TBD and promote legislation that will require health insurers to provide appropriate coverage for those treatments, ideally on the federal level, as several states have done already. This will alleviate the financial strain currently associated with such treatments and allow a greater number of patients to access necessary care, a factor particularly important for families with more than one family member who is ill. Require better physician education, which will reduce the number of physicians that many people see before being correctly diagnosed with TBD and prevent delays in treatment which lead to more chronic and disabling symptoms. This will also reduce the cost of treatment in terms of time, energy, finances and heartache. Promote improved public awareness and understanding of TBDs, to alleviate the isolation and despair experienced by so many patients, who often experience loss of support from family and friends unfamiliar with the complexity of the disease. What Needs to Change? Education has been one of our top priorities to facilitate appropriate, timely diagnosis and treatment, and to minimize the risk of chronic illness and disability. There is an urgent need for more accurate, affordable, and reliable testing to reduce the risk of misdiagnosis leading to chronic illness, miscarriage, disability, unexplained neuropsychiatric disease (depression, anxiety, OCD, psychosis, suicide) and even death. The CDC must restore the language included in 2011, which is currently omitted from the case definition posted on their website: “this surveillance case definition was developed for national reporting of Lyme disease; it is not intended to be used in clinical diagnosis.” Provider education must include the following statement, which appears as a footnote in the Lyme disease treatment guidelines published by the Infectious Diseases Society of America (IDSA): It is important to realize that guidelines cannot always account for individual variation among patients. They are not intended to supplant physician judgment with respect to particular patients or special clinical situations. The Infectious Diseases Society of America considers adherence to these guidelines to be voluntary, with the ultimate determination regarding their application to be made by the physician in the light of each patient's individual circumstances. Given the unsettled science regarding TBD, providers must be familiar with both sets of published treatment guidelines and prepared to share that information with their patients, including the potential risks and benefits of each treatment choice. This is similar to what is currently done in the areas of breast cancer and prostate screening, and Lyme disease deserves no less. Only when providers are fully informed themselves will they be able to provide shared decision-making and true informed consent for their patients. The need for legislation, similar to what has been passed in several states: 1) Physician protection, which affords licensed providers the right to diagnose and treat according to clinical criteria, 2) Lyme and TBD treatment coverage insurance mandate, which require insurance coverage for treatment based on clinical diagnosis and criteria, when made by licensed providers and 3) Patient information disclosures legislation requiring that patients and providers be appraised of the limitations or unreliability of laboratory testing for Lyme and TBDs. Lyme disease is a complex, potentially multi-systemic illness which requires considerable time to evaluate and treat, to coordinate care with other specialists, and consult with social service agencies which may be involved. Current reimbursement practices must allow providers enough time to do this properly and receive appropriate compensation for their time and expertise. This will encourage more providers to take on the challenges of treating patients with this disease, preventing provider burnout and financial stress. In conclusion, our subcommittee has identified barriers to access to care and patient support that lead to misdiagnosis, promote improper treatment, and contribute to the ranks of chronically ill and disabled communities. It is essential to address these barriers to care, and to extend to all TBD patients the compassion, caring and respect that they deserve. Respectfully submitted. Appendix 1: References by Topic Key Theme 1: Access to Care and Support: Past Issue #1: How did we get here? Background American Psychiatric Association. (2016). The American Psychiatric Association practice guidelines for the psychiatric evaluation of adults (3rd ed.). Retrieved March 3, 2017, from http://psychiatryonline.org/doi/pdf/10.1176/appi.books.9780890426760 Andrade, B. B., Teixeira, C. R., Barral, A., & Barral-Netto, M. (2005). Haematophagous arthropod saliva and host defense system: A tale of tear and blood. Annals of the Brazilian Academy of Sciences, 77(4), 665-693. Ang, C. W., Notermans, D. W., Hommes, M., Simoons-Smit, A. M., & Herremans, T. (2011). Large differences between test strategies for the detection of anti-Borrelia antibodies are revealed by comparing eight ELISAs and five immunoblots. European Journal of Microbiology & Infectious Diseases, 30, 1027-1032. doi:10.1007/s10096-011-1157-6 Bakken, L. L., Callister, S. M., Wand, P. J., & Schell, R. F. (1997). Interlaboratory comparison of test results for detection of Lyme disease by 516 participants in the Wisconsin State Laboratory of Hygiene/College of American Pathologists Proficiency Testing Program. Journal of Clinical Microbiology, 35(3), 537-543. Bransfield, R. C. (1996). The neuropsychiatric assessment of Lyme disease. Retrieved March 3, 2017, from http://www.mentalhealthandillness.com/lymeframes.html Bransfield, R. C. (April 25, 1998). The neuropsychiatric assessment of Lyme disease by the primary care physician. 11th Annual International Scientific Conference on Lyme Disease & Other Spirochetal and Tick-borne Disorders: New York. Bransfield, R. C. (2017). Suicide and Lyme and associated diseases. Neuropsychiatric Disease and Treatment, 13, 1575-1587. doi:10.2147/NDT.S136137 Bransfield, R. C. (2018a). Aggressiveness, violence, homicidality, homicide, and Lyme disease. Neuropsychiatric Disease and Treatment, 14, 693-713. Bransfield, R. C. (April 28, 2018b). Lyme borreliosis and mental illness: Past, present and future [PowerPoint slides]. European Lyme Borreliosis Conference: Villach, Austria. Burgdorfer, W., Barbour, A. G., Hayes, S. F., Benach, J. L., Grunwaldt, E., & Davis, J. P. (1982). Lyme disease: A tick-born spirochetosis? Science, 216(4552), 1317-1319. Chowdri, H. M., Gugliotta, J. L., Berardi, V. P., Goethert, H. K., Molloy, P. J., Sterling, S. L., & Telford III, S. R. (2013). Borrelia miyamotoi infection presenting as human granulocytic anaplasmosis. Annals of Internal Medicine, 159, 21-27. Clark, K. L., Leydet, B., & Hartman, S. (2013). Lyme Borreliosis in human patients in Florida and Georgia, USA. International Journal of Medical Sciences, 10(7), 915-931. doi:10.7150/ijms.6273 Clark, K. L., Leydet, B. F., & Threlkeld, C. (2014). Geographical and genospecies distribution of Borrelia burgdorferi sensu lato DNA detected in humans in the USA. Journal of Medical Microbiology, 63, 674-684. doi:10.1099/jmm.0.073122-0 Conant, J. L., Powers, J., Sharp, G., Mead, P. S., & Nelson, C. A. (2018). Lyme Disease Testing in a High-Incidence State: Clinician Knowledge and Patterns. American Journal of Clinical Pathology, 149(3):234-240. doi:10.1093/ajcp/aqx153 Frost, A. (2016). A grounded theory exploration of knowing: Beginning with the reality of the lyme body (Doctoral dissertation). Gonzaga University, Spokane, WA. Girard, Y. A., Fedorova, N., & Lane, R. S. (2011). Genetic diversity of Borrelia burgdorferi and detection of B. bissettii-like DNA in serum of north-coastal California residents. Journal of Clinical Microbiology, 49(3), 945-954. doi:10.1128/JCM.01689-10 Hamlen, R. A., & Kliman, D. S. (2007). Lyme disease: Etiology, neuropsychological sequelae, and educational impact. Newspaper of the National Association of School Psychologists, 35(5), 34-36. Hersh, M. H., Ostfeld, R. S., McHenry, D. J., Tibbetts, M., Brunner, J. L., Killilea, M. E., . . . Keesing, F. (2014). Co-infection of blacklegged ticks with Babesia microti and Borrelia burgdorferi is higher than expected and acquired from small mammal hosts. PLoS One, 9(6), 1-8. Horowitz, R. I. (2013). Why can’t I get better? Solving the mystery of Lyme & chronic disease. New York: St. Martin’s Press. Johnson, L., Aylward, A., & Stricker, R. B. (2011). Healthcare access and burden of care for patients with Lyme disease: A large United States survey. Health Policy, 102, 64-71. Johnson, L., & Stricker, R. B. (2010a). Final report of the Lyme disease review panel of the Infectious Diseases Society of America: A pyrrhic victory? Clinical Infectious Diseases, 51(9), 1108-1009. doi:10.1086/656690 Johnson, L., Wilcox, S., Mankoff, J., & Stricker, R. B. (2014). Severity of chronic lyme disease compared to other chronic conditions: A quality of life survey. PeerJ, 2(e322), 1-21. doi:10.7717/peerj.322 doi:10.1016/j.healthpol.2011.05.007 Keller, A., Graefen, A., Ball, M., Matzas, M., Boisguerin, V., Maixner, F., . . . Zink, A. (2012). New insights into the Tyrolean Iceman’s origin and phenotype as inferred by whole-genome sequencing. Nature Communications, 3(698), 1-9. doi:10.1038/ncomms1701 Luger, S. W., & Krauss, E. (1990). Serologic tests for Lyme disease. Archives of Internal Medicine, 150, 761-763. Murray, P. (1996). The widening circle: A Lyme disease pioneer tells her story. New York: St. Martin’s Press. Poinar, Jr., G. (2014). Spirochete-like cells in a Dominican amber Ambylomma tick (Arachnida: Ixodidae). Historical Biology, 26, 1-6. doi:10.1080/08912963.2014.897699 Rister, R. (2015). New tick-borne infection similar to Lyme disease appears in US and UK. SteadyHealth. Retrieved April 29, 2018, from https://www.steadyhealth.com Sokolowski, R. (2000). Introduction to phenomenology. Cambridge, NY: Cambridge University Press. Spielman, A., Telford III, S. R., & Pollack, R. J. (1993). The origins and course of the present outbreak of Lyme disease. In H. S. Ginsberg (Ed.), Ecology and environmental management of Lyme disease (pp. 83-96). New Brunswick, NJ: Rutgers University Press. Statlender, S. (October 21, 2016). The brain and behavior in tick-borne diseases: Diagnostic challenges for mental health practitioners. Infectious Causes of Mental Illness: The Impact of Infections on the Brain: Ridgefield, CT. Stricker, R. B., & Lautin, A. (2003). The Lyme wars: Time to listen. Expert Opinion on Investigational Drugs, 12(10), 1609-1614. Stricker, R. B., Lautin, A., & Burrascano, J. J. (2006). Lyme disease: The quest for magic bullets. Chemotherapy, 52, 53-59. doi:10.1159/000091726 Weintraub, P. (2013). Cure unknown: Inside the Lyme epidemic (Rev. ed.). New York: St. Martin’s Press. Wormser, G. P., Dattwyler, R. J., Shapiro, E. D., Halperin, J. J., Steere, A. C., Klempner, M. S., . . . Nadelman, R. B. (2006). The clinical assessment, treatment, and prevention of Lyme disease, human granulocytic anaplasmosis, babesiosis: Clinical practice guidelines by the Infectious Diseases Society of America. Clinical Infectious Diseases, 43(9), 1089-1134. doi:10.1086/508667 Zhang, X., Martin, M. I., Peña, C. A., Hopkins, A. B., Wroth, L., & Fix, A. D. (2006). Economic impact of Lyme disease. Emerging Infectious Diseases, 12(4), 653-660. Key Theme 2: Access to Care and Patient Support - Present Issue #2: What is the current state of access to care and which supports are available to patients & families? Key Theme 3: Awareness & Education - Public & Patients Issue #3: Public Education Public Education www.bayarealyme.org/educators/school-administrators/ https://www.cdc.gov/media/releases/2013/p0819-lyme-disease.html https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4960477/ http://www.bwhpreventlyme.org/wp-content/uploads/2008/05/curriculumfinalversion5-12-08.pdf Other relevant articles: https://globallymealliance.org/education-awareness/curriculum-educational-activities/ http://www.maine.gov/dhhs/mecdc/infectious-disease/epi/school-curriculum/index.shtml https://www.cdph.ca.gov/Programs/CID/DCDC/CDPH%20Document%20Library/DLTTBCurriculumGu%20ide.pdf%20module.lymediseaseassociation.org/School_Curriculum_Order_Form.doc http://www.newburyport.k12.ma.us/District/Departments/Health-Services/Teacher-Resources/Lyme-andTick-Borne-Diseases-for-Teachers/index.html Issue #3: Public Education Legislation http://www.mldse.org/p/legislation.html Key Theme 4: Access to Affordable Medical Care Issue #7: Federal & State Government Barriers Adrion, E. R., Aucott, J., Lemke, K. W., & Weiner, J. P. (2015). Health care costs, utilization and patterns of care following Lyme disease. PLoS One, 10(2), 1-14. doi:10/1371/journal.pone.0116767 Center for Telehealth and e-Health Law. (n.d.a). Physician licensure [Website]. Retrieved September 8, 2015, from http://ctel.org/ Center for Telehealth and e-Health Law. (n.d.b). Reimbursement [Website]. Retrieved September 8, 2015, from http://ctel.org/ Centers for Disease Control and Prevention. (n.d.a). FY 2014 operating plan. Retrieved December 9, 2014, from http://www.cdc.gov/fmo/topic/Budget%20Information/appropriations_budget_form_pdf/FY2014_CDC_Operating_Plan.pdf Centers for Disease Control and Prevention. (n.d.b). FY 2017 operating plan. Retrieved April 23, 2018, from https://www.cdc.gov/budget/documents/fy2017/fy-2017-cdc-operating-plan.pdf Harris, E., & Younggren, J. N. (2011). Risk management in the digital world. Professional Psychology: Research and Practice, 42(6), 412-418. doi:10.1037/a0025139 Johnson, L., Aylward, A., & Stricker, R. B. (2011). Healthcare access and burden of care for patients with Lyme disease: A large United States survey. Health Policy, 102, 64-71. doi:10.1016/j.healthpol.2011.05.007 Johnson, L., & Stricker, R. B. (2010). The Infectious Diseases Society of America Lyme guidelines: A cautionary tale about the development of clinical practice guidelines. Philosophy, Ethics, and Humanities in Medicine, 5(9), 1-17. doi:10.1186/1747-5341-5-9 Johnson, L., Wilcox, S., Mankoff, J., & Stricker, R. B. (2014). Severity of chronic Lyme disease compared to other chronic conditions: A quality of life survey. PeerJ, 2(e322), 1-21. doi:10.7717/peerj.322 Johnson, M., & Feder, Jr., H. M. (2010). Chronic Lyme disease: A survey of Connecticut primary care physicians. The Journal of Pediatrics, 157, 1025-1029. doi:10.1016/j.jpeds.2010.06.031 Maloney, E. L. (2011). The management of Ixodes scapularis bites in the Upper Midwest. Wisconsin Medical Journal, 110(2), 78-85. National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention, Centers for Disease Control and Prevention. (2011). HIV surveillance report (Vol. 23). Retrieved from http://www.cdc.gov/ Seaver, J. (2015, March 24). Please help Lyme doctor Yang in San Diego who is being targeted [Web log post].Jenna’s Lyme Blog. Retrieved from http://lymediseaseresource.com/ U.S. Senate, Committee on Labor and Human Resources. (1993, August 5). Lyme disease: A diagnostic and treatment dilemma (S. Hrg. 103-265). Washington, D.C.: U.S. Government Printing Office. U.S. Department of Health and Human Services, Centers for Disease Control and Prevention. (2014, September 2). Breast cancer statistics [Website]. Retrieved November 12, 2014, from http://www.cdc.gov/cancer/breast/statistics/ Under Our Skin. (n.d.) The doctor is in: An important update on Dr. Joseph Jemsek [Web log post]. Author. Retrieved August 31, 2015, from http://underourskin.com/ Zhang, X., Martin, M. I., Peña, C. A., Hopkins, A. B., Wroth, L., & Fix, A. D. (2006). Economic impact of Lyme disease. Emerging Infectious Diseases, 12(4), 653-660. Issue #9: Underrepresented & High-Risk Populations Children Bloom, B.J., Wyckoff, P.M., Meissner, H.C., & Steere, A.C. Neurocognitive abnormalities in children after classic manifestations of Lyme disease. Pediatric Infectious Disease Journal, 17, 1998, pp. 189-196. Hamlen, R. & Kliman, D. Lyme disease: Etiology, neuropsychological sequelae and educational impact. Pediatric School Psychology Communique. Volume 36: No. 5, February, 2007, pp. 34-35. Leventhal, Judith. Infection-induced neurocognitive impairments: The neuropsychological evaluation. Presented as part of "Infectious Causes of Mental Illness: The Impact of Infections on the Brain." Lear Retreat Center, Ridgefield, CT., October 21, 2016. Sponsored by Lyme Connection, the Leir Charitable Foundation and the Lyme Disease Association, Inc. McAuliffe, P., Brassard, M., & Fallon, B. Memory and executive functions in adolescents with post-treatment Lyme disease. Applied Neuropsychology, 15: 208-219, 2008. Tager. F.A., Fallon, B.A., Keilp, J.,Rissenberg, M., Jones, C.R. & Liebowitz, M. A controlled study of cognitive deficits in children with Lyme disease. Journal of Neuropsychiatry and Clinical Neurosciences, 2001, 13, 500-507. Weintraub, P. Munchausen: Unusual Suspects. Psychology Today, September 1, 2007. Mental Health Patients Bransfield, R. “Lyme Borreliosis and Mental Illness: Past, Present and Future.” Presentation to the European Lyme Borreliosis Conference, International Conference of the Germans Borreliosis-Society. Bransfield, R. Lyme disease, tick-borne diseases and neuropsychiatric disorders. Psychiatric Times: Special Report – Comorbidity. December, 2007. Bransfield, R. Aggressiveness, violence, homicidality, homicide, and Lyme disease. Neuropsychiatric disease and treatment. Dove Press 2018:14. Fallon, B. & Nields, J. Lyme disease: a neuropsychiatric illness. Am J Psychiatry 151:11, November, 1994, pp. 1571-1580. Statlender, S. The Brain and Behavior in Tick-Born Diseases: Diagnostic Challenges for Mental Health Practitioners. Presented as part of "Infectious Causes of Mental Illness: The Impact of Infections on the Brain." Lear Retreat Center, Ridgefield, CT., October 21, 2016. Sponsored by Lyme Connection, the Leir Charitable Foundation and the Lyme Disease Association, Inc. Weintraub, P. Emerging diseases: An infection can change your personality – there’s plenty of proof. March 30, 2009. Retrieved from https://www.psychologytoday.com/us/blog/emerging-diseases/200903/infection-can-change-your-personality-theres-plenty-proof. 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Stricker RB1, Johnson L2. https://www.lymedisease.org/mylymedata/ Ethical Decision Making About Lyme Disease Policy https://www.youtube.com/watch?v=2iQweqOZnXU Qual Health Res. 2017 Mar;27(4):534-546. doi: 10.1177/1049732315619380. Epub 2016 Jul 10. Living in Limbo: Contested Narratives of Patients With Chronic Symptoms Following Lyme Disease. Rebman AW1,2, Aucott JN2, Weinstein ER1,2, Bechtold KT2, Smith KC3, Leonard L3,4. Dusenbery, Maya (2018). Doing Harm, Harper Collins Centers of excellence in healthcare institutions: what they are and how to assemble them James K. Elrod1 and John L. Fortenberry, Jr.1,2 http://cdmrp.army.mil/aboutus NY Times, Gina Kolata, https://www.nytimes.com/2009/06/28/health/research/28cancer.html Health system frameworks and performance indicators in eight countries: A comparative international analysis Jeffrey Braithwaite,1 Peter Hibbert,1 Brette Blakely,1 Jennifer Plumb,2 Natalie Hannaford,3 Janet Cameron Long Appendix 2: Access to Care Services and Support to Patients Subcommittee Agendas and Top Line Summaries Meeting Summary 1, February 28, 2018 Agenda Roll call Discussion of the working plan Vote on the working plan Discussion about the first draft submission of the "Issues and Priorities" report Vote to approve and have the first draft of the "Issues and Priorities" report submitted to the writer Discussion about the "Methods" report submission Vote to submit the "Methods" report to the writer as a completed document Technology - accessing files and email Wrap-up Summary of Key Points Are Lyme disease and other tick-borne diseases new? What are the needs of the public and patients relating to tick-borne diseases? Is there a lack of access to affordable medical care for people with tick-borne diseases? Are there barriers to patients seeking proper diagnosis and treatment? Are there barriers to diagnosis and treatment that exist at the federal or state government levels? Key Discussion Point-The Past, Present, and Future of Access to Care and Support to Patients Key Discussion Point-Barriers to Accessing and Providing Patient Care and Support Key Discussion Point-The Past, Present, and Future of Access to Care and Support to Patients Key Discussion Point-Barriers to Accessing and Providing Patient Care and Support Meeting Summary 2, March 7, 2018 Agenda Roll Call Call Summary from Wednesday, 28 FEB 2018 Group Nominations and Decision for the Non-Federal Subcommittee Co-Chair Discussion of the Voting and Decision-Making Process for Subcommittees of the Tick-Borne Disease Working Group Timeline for Deliverables to the Tick-Borne Disease Working Group Next Deliverable-Background and/or Methods Section(s) Division of the Six Issues/Priorities Technology - Accessing Files Other Issues/Wrap-Up Summary of Key Points Key Discussion Point- Group nominations and decision for non-Federal subcommittee co-chair Key Discussion Point- Discussion of the voting and decision-making process for subcommittees of the Tick-Borne Disease Working Group Key Discussion Point-Timeline and Division of Work on Deliverables to the Tick-Borne Disease Working Group Key Discussion Point-Organization of Topics in the Report to the Tick-Borne Disease Working Group Key Discussion Point-Establishing a Work Plan and Identifying Possible Speakers Meeting Summary 3, March 14, 2018 Agenda Roll call Vision, Values, and Ethics pledge for the TBDWG and its subcommittees Open discussion and reflection on the above Open discussion on questions/observations regarding unity in the Lyme/TBD community, specifically with patient advocacy Announcement of new co-chair with vote tallies for the nominees and verbal acceptance of position by the member selected Revised Timeline for Access to Care/Patient Support deliverables to TBDWG Next deliverable-Background and Methods sections Division of the six Issues/Priorities identified in Table 2 of the draft section and outline of work plan Other issues/Wrap-up Summary of Key Points Key Discussion Point-Review and Discussion of Ethics Pledge, Mission, Vision, and Values Key Discussion Point-Unity and Division in the Lyme/Tick-Borne Disease Community Meeting Summary 4, March 28, 2018 Agenda Roll call Addressing Issues of Communication Division of writing tasks for the subcommittee report to the Tick-Borne Disease Working Group-work plan/outline Other issues/Wrap-up Summary of Key Points Key Discussion Point-Communication Within and Outside the Subcommittee Key Discussion Point-Issues and Priorities Meeting Summary 5, April 4, 2018 Agenda Roll call Open forum for DFO and TBDWG Vice-Chair if needed Discussion of documents submitted to subcommittee as well as other relevant documents/issues Update on speaker presentations on next three calls Division of the subcommittee report to TBDWG-- work plan/outline Other issues/Wrap-up Summary of Key Points Key Discussion Point-Working Group Processes Key Discussion Point-Topics to Include in the Report to the Tick-Borne Disease Working Group Meeting Summary 6, April 18, 2018 Agenda Roll call Updates from DFO and TBDWG Vice-Chair as needed General housekeeping, especially regarding any issues with SharePoint Speaker presentations Presentation 1: Patient Access to Care: The Role of Physician Education Betty Maloney, MD; Minnesota Lyme activist and President of Partnership for Healing & Health Presentation 2: Global Lyme Alliance Activities Scott Santarella; Global Lyme Alliance Presentation 3: Experiences as an Investigative Reporter Researching Lyme Diseases Mary Beth Pfeiffer; Author/Journalist (LYME: The First Epidemic of Climate Change) Meeting Summary 7, April 25, 2018 Agenda Roll call Welcome and introduction of new member to the subcommittee Updates from DFO and TBDWG Vice-Chair as needed Speaker presentations Presentation 1: Cohen Lyme and Tick-borne Disease Initiative Bennett (Ben) Nemser, MPH; Epidemiology; Senior Program Officer, Steven & Alexandra Cohen Lyme Foundation Presentation 2: Recent Work Helping Patients with Insurance Company Denials and Working to Change State Laws Susan Green; Legislative Counsel, NatCapLyme Presentation 3: Access to Care Challenges Nevena Zubcevik, DO, MSPT; Clinical Co-Director, Spaulding Rehabilitation Network Meeting Summary 8, May 2, 2018 Agenda Roll call Speaker presentations Presentation 1: MyLyme Data Lorraine Johnson, JD, MBA; Chief Executive Officer, LymeDisease.org Presentation 2: Creation of the Focus on Lyme Biorepository Tammy Crawford; Founder, Executive Director, Focus on Lyme Presentation 3: Barriers and Opportunities for Improved Access to Care and Support to Patients Richard Horowitz, MD; Medical Director, Hudson Valley Healing Arts Center Meeting Summary 9, May 3, 2018 Agenda Roll call Determination of Potential Actions for the final report to the Tick-Borne Disease Working Group Appendix 3: Informed Consent for Treatment of Persistent Lyme Disease This information is accessible on the LymeDisease.org website at https://www.lymedisease.org/wp-content/uploads/2018/05/Informed-consent-for-Lyme-treatment.pdf. Appendix 4: The "Lyme-Literate" Mental Health Evaluation Sheila M. Statlender, PhD The following list is not meant to be all-inclusive, but rather to provide examples of the types of questions which are helpful in screening for possible Lyme-induced neuropsychiatric symptoms in our patients. Are the symptoms of new onset? Do they represent a marked change, in terms of previous level of functioning? Does the patient live in a Lyme-endemic area or has s/he visited on recently? Does the patient engage in activities that are high-risk, in terms of Lyme disease? Examples include gardening, hiking and camping, although many tick bites occur in the back yard. Does s/he own an indoor/outdoor animal? Does the patient report a history of tick attachment(s)? Has the patient ever been treated for Lyme or another tick-borne disease? If so, was treatment administered and for how long? Has the patient ever suspected that s/he had Lyme disease, but was told that it was ruled out? Has the patient ever noticed improvement in symptoms after a course of antibiotics for another reason? Ever noticed that antibiotics made them feel worse? (Jarisch-Herxheimer reaction) Does that patient report new onset medical symptoms? What type? Typical examples may include but are not limited to new onset headaches, often of migraine intensity, sever fatigue, joint pain, gastrointestinal distress, shooting pains and/or tingling in the extremities, light or sound sensitivity. Does the patient report new onset cognitive difficulties? These may include but are not limited to difficulties with concentration and attention, recent memory, reduced processing speed, as well as a tendency to get lost, even in familiar places. The informal term for these combined difficulties is "brain fog." Does the patient have family members or a family pet that was diagnosed with Lyme disease?