Growing evidence of an emerging tick- borne disease that causes a Lyme-like illness for many Australia patients. Professor Noel. Campbell Fellow Australasian College of Nutritional and Environmental Medicine Executive Summary: Over the past three decades, thousands of Australian families have felt the impact of Lyme and other tick-borne diseases (TBDs), with an estimated10,000 individuals affected each year. Whether it is a laborer who cannot continue his work because of debilitating joint pain, or a child who misses school because of debilitating fatigue, pain and cognitive dysfunction, TBDs can have a significant effect on the day to day lives of Australians. Since Lyme disease was first identified in Australia in 1982, the disease has spread geographically, and in severity. It has been documented that there has been an increase in tickborne diseases in Australia, including early and late forms, as well as an increase in neurological cases. The patient experience may be characterized by delays in diagnosis, confusion, frustration, ongoing illness, with, in many cases poor outcomes, disability and a significant financial burden. (Most recently, we have started to record deaths in Australia from tickborne diseases.) Recognizing these facts, the Parliament of Australia has referred these matters to the Senate Community Affairs References committee for enquiry and report. The Senate acknowledged the significant toll TBDs may exact on individuals, families, communities, and the state, noting that TBDs pose a serious threat to the health and quality of life of many residents and visitors to Australia. The purpose of this inquiry should be to establish a Lyme and related tickborne diseases task force charged with exploring and identifying recommendations related to education and awareness, long- term effects of misdiagnosis, prevention, and surveillance. The intent of the recommendations are generally to improve Australia’s response to the tickborne disease burden. This submission reflects the history of TBDs in Australia, and includes specific recommendations as well as implementation strategies, case studies, and resource needs. While the Senate Inquiry will be the result of months of research and co-collaboration, it is clear that its report is merely the beginning of a much-needed dialogue and structured planning process across the country. The primary recommendations in this submission focus on increased and improve surveillance, prevention of tick exposure strategies and tactics, as well as education and awareness for healthcare practitioners(HCPs), patients, the general public and other stakeholders. In contemplating each recommendation, the author carefully considered each of the countries key stakeholders, including patients of all ages and their families, vulnerable populations, health care providers, domestic animals, researchers, Government agencies, policy makers, schools and community organisations, and the general public. Key Themes: 1. Tickborne disease knowledge and research is evolving rapidly. It will be vital to encourage critical research, to understand the scope and scale of Lyme and other TBDs in Australia, and to develop options to improve the public health response and the community/ patient outcomes. 2. Different schools of thought exist among all stakeholders regarding Lyme. Ambiguities do exist so it is important to promote a strong and academically rigourous pursuit of better research to help clarify the best options for patients. We are encouraged to keep an open mind, and to continue to explore the nature of these diseases and their health impacts. 3. The most critical research gap is the lack of a gold standard test for Lyme and other tickborne infections; a test that can quickly and accurately diagnose the disease, and prove or disprove ongoing persistence. Research into bio- resonance for diagnosis and treatment of Lyme disease is producing encouraging results in Melbourne Australia. 4. Without more research and surveillance, it will be difficult to stay ahead of this rapidly evolving public health problem. 5. The cost to Australia of doing nothing is considerable. 6. Without targeted and significant funding, it is unlikely these recommendations can be deployed in an effective and impactful way. 7. Collaboration among the commonwealth’s diverse stakeholders Will help ensure programs and strategies are innovative, effective, and measurable. Too many Australians have suffered the consequences of Lyme and TBD’s, and without action, thousands more remain at risk. This is important public health challenge affects all Australians -every state has reported ticks infected with bacteria. And yet our children, our elderly, and our 2 immunocompromised are most at risk and most vulnerable to their impact. Our actions now, will significantly impact Australian youth’s risk and future potential. The author respectfully requests Swift action on the enclose recommendations by all state leaders charged with ensuring the protection and well being of the Commonwealth’s residents. 3 Growing evidence of an emerging tick-borne disease that causes a Lyme like illness for many Australian patients: Senate Enquiry: Summary Index: See detailed Index Page 384 The prevalence and geographic distribution of Lyme-like illness in Australia: 3 Methods of reducing the stigma associated with Lyme-like illness: 24. The process for diagnosis of patients with a Lyme like illness: 29 Evidence of investments in contemporary research into Australian pathogens specifically acquired through the bite of a tick. 39 Potential investment into research to discover unique local causative agents causing a growing number of Australians debilitating illness. 294 The signs and symptoms Australians with Lyme-like illness are enduring, and the treatment they receive from medical professionals. 310 Any other related matters. 4 a. The prevalence and geographic distribution of Lyme-like illness in Australia: Lyme Disease Association of Australia Map of Australia showing prevalence of proven cases of Lyme disease: There are no formal figures on the illness, but the Lyme Disease Association estimates there are more than 10,000 diagnosed cases in Australia. The organisation estimates that many more cases, perhaps hundreds of thousands, are undisagnosed. Significant Impact on the Quality of Life in Australia: Lyme disease is a complex infection that has several manifestations and can affect different systems within the body including the skin, joints, heart, and nervous system. Lyme disease may carry significant and potentially lifechanging burdens, especially if the disease goes undiagnosed or untreated for a prolonged period. Unfortunately, it is common for Lyme disease to go undetected and untreated in absence of the hallmark bull’s-eye (erythema migrans) rash, leading to 5 functional impairments and quality of life impacts, such as damage and infections of the joints, heart, and nervous system. Many of the symptoms of TBDs are similar to those of other conditions, which further complicates diagnoses at any stage. Like syphilis, which is also caused by spirochete bacteria, some researchers also refer to Lyme disease as “the New Great Imitator.” The fever, muscle aches, and fatigue associated with Lyme disease or other TBDS can be mistaken for viral infections, such as influenza or infectious mononucleosis. Joint pain can be mistaken for other types of arthritis, such as juvenile rheumatoid arthritis (JRA), and neurologic signs of Lyme disease can mimic those caused by other conditions, such as multiple sclerosis (MS) and amyotrophic lateral sclerosis (ALS). As mentioned previously, Lyme disease and other TBDs can have significant consequences for patients, including – in the most severe cases – death. In 2013, a 52 year-old adult in New Jersey died from contracting the Powassan virus and in 2014, a three year-old child in Pennsylvania died from Rocky Mountain spotted fever. Recent research has identified co-infections with Lyme disease and one or more other TBD as a significant concern because of diagnostic challenges as well as the intensity and duration of symptoms. Economic Costs of Tick-Borne Diseases: Beyond the significant personal impacts these diseases may cause, TBDs also create a significant economic burden in Australia. Over $10 million in annual medical expenses in the Australia have been attributed to Lyme disease as well as up to $10,000 per patient annually in lost productivity. Lyme disease patients required 87 percent more visits to the doctor, and 71 percent more visits to the emergency room in comparison with those without Lyme disease. Diverse Perspectives of the Medical Community: The rapid expansion of TBDs in Australia is further complicated by a lack of consensus among researchers and healthcare practitioners (HCPs) in many critical areas. There are two organizations that have published guidelines for diagnosis and treatment of Lyme and other TBDs: the Infectious Disease Society of America (IDSA), and the International Lyme and Associated Diseases Society (ILADS). The medical community varies in its approach to treating patients with Lyme disease, for example, the adherence to a specific timeframe for antibiotic treatment. Representation of the diversity of these views calls for a “broad spectrum of views to be represented and communicated to patients”. Areas of concern: We require additional research to address unanswered questions about TBDs, such as: 1) What are the biologic processes in humans that cause ongoing symptoms