Chapter 1Introduction
Referral
1.1On 20 November 2024, the following matter was referred to the Senate Community Affairs References Committee (the committee) for inquiry and report by 26March2025:
Issues related to the access to diagnosis and treatment for people in Australia with tick-borne diseases, with particular reference to:
a. the initiatives and resources developed to improve awareness, diagnosis, treatment and management of tick-borne diseases in Australia since the release in 2016 of the Community Affairs References Committee report Growing evidence of an emerging tick-borne disease that causes a Lyme-like illness for many Australian patients;
b. the adequacy and effectiveness of the ‘debilitating symptom complexes attributed to ticks’ clinical pathway to support patients;
c. current research to advance the management of complex inflammatory diseases; and
d. any other related matters.
Conduct of the inquiry
1.2Details of the inquiry were published on the committee’s website and the committee invited a number of organisations and individuals to lodge submissions. The committee received 259submissions, which are listed at Appendix1.
1.3The committee held one public hearing, in Canberra on 29 January 2025.
1.4A list of witnesses who gave evidence at this public hearing is available at Appendix2.
Structure of the report
1.5This report is comprised of five chapters, as outlined below:
Chapter 1 provides an introduction to the report, previous inquiries, and tick-bornediseases;
Chapter 2 examines the development and use of the Debilitating Symptom Complex Attributed to Ticks Clinical Pathway (DSCATT Pathway), and government fundedresearch;
Chapter 3 examines evidence received in relation to the diagnosis and treatment of tick-borneillnesses;
Chapter 4 provides an overview of the experiences of patients in seeking diagnosis and treatment;and
Chapter 5 contains the committee view and recommendations.
Acknowledgements
1.6The committee thanks all those who contributed to the inquiry by making submissions, and appearing before the committee at its public hearing.
1.7In particular, the committee acknowledges the courage and generosity of those who shared their direct and contemporary lived experiences. The submissions and evidence deepened the committee’s understanding of the matter.
Statement of intent
1.8The committee is cognisant of the considerable debate that exists in Australia regarding whether Lyme disease can be locally acquired. It also recognises that there is an ongoing debate internationally regarding both the existence and nomenclature of ‘Chronic Lyme disease’.
1.9Where submitters refer to receiving a diagnosis of Lyme disease, Chronic Lyme or other tick-borne diseases; or refer to being misdiagnosed when they do not receive such a diagnosis, the committee includes this information to accurately refer to the evidence it has received. It does not express a view on whether such diagnoses are correct, nor does it intend to express a view on whether Lyme disease is present inAustralia.
1.10This committee, like its predecessors in 2016, recognises that patients are suffering, and their symptoms are real.
Previous inquiries
1.11On 12 November 2015, the Senate referred the following matter to the Senate Community Affairs References Committee for inquiry and report:
The growing evidence of an emerging tick-borne disease that causes a Lyme-like illness for many Australianpatients.
The terms of reference were:
(a)the prevalence and geographic distribution of Lyme-like illness inAustralia;
(b)methods to reduce the stigma associated with Lyme-like illness for patients, doctors andresearchers;
(c)the process for diagnosis of patients with a Lyme-like illness, with a specific focus on the laboratory testing procedures and associated quality assurance processes, including recognition of accredited international laboratory testing;
(d)evidence of investments in contemporary research into Australian pathogens specifically acquired through the bite of a tick and including other potential vectors;
(e)potential investment into research to discover unique local causative agents causing a growing number of Australians debilitating illness;
(f)the signs and symptoms Australians with Lyme-like illness are enduring, and the treatment they receive from medical professionals; and
(g)any other related matters.
1.12Due to the federal election, however, the inquiry lapsed at the dissolution of the Senate on 9 May 2016, by which time the committee had held three hearings, in Perth, Brisbane and Canberra. Given the large volume of evidence received, the committee tabled a comprehensive interim report on 4 May 2016, just prior to the dissolution of the Senate.
1.13The Interim Report made three recommendations including that the matter be re-referred for inquiry in the 45th Parliament, and that the Australian Government further develop education and awareness strategies for both the public and medical professionals in the prevention, diagnosis and treatment of tick-borne illnesses. It also recommended ongoing engagement between the Chief Medical Officer and medical and patient representatives.
1.14On 9 November 2016, the Government Response to the Interim Report wastabled.
1.15On 13 September 2016, the Senate agreed to re-refer the inquiry with a reporting date of 30November2016. The committee did not call for further evidence, having already received and considered over 1200submissions prior to tabling its interim report. It did however hold an additional publichearing.
1.16The committee’s final report made 12 recommendations.
1.17On 15 November 2017, the Government Response to the Final Report wastabled.
Tick-borne illnesses in Australia
1.18Ticks are known to transmit pathogens to humans, and cause illness, both in Australia and internationally. The Australian Government recognises the presence of a number of endemic tick-borne pathogens, which are outlined below. The below sections are not intended to provide an exhaustive list of tick-borne illnesses, but to highlight those which have been raised inevidence.
Rickettsial infections
1.19Two systemic infections known to be transmitted by tick bites in Australia are: infection with Rickettsia spp. which causes Queensland tick typhus (QTT), Flinders Island spotted fever (FISF), and Australian spotted fever (ASF); and infection with Coxiella burnetii which causes Qfever.
1.20The species of Australian ticks known to bite humans and transmit bacterial infectionare:
the Australian paralysis tick, endemic on the east coast of Australia and which causes QTT due to Rickettsia australis and Q fever due to C. burnetii;
the common marsupial tick occurs in New South Wales, Queensland, South Australia, Western Australia, Tasmania and Victoria and which causes QTT; and ASF due to Rickettsia honei subsp. marmionii;
the southern paralysis tick occurs in New South Wales, Victoria and Tasmania and which causes QTT;
the ornate kangaroo tick occurs throughout much of the central, northern and western Australia and which causes Q fever;
the southern reptile tick occurs mainly in south eastern Australia and which causes FISF due to R. honei;and
the Haemaphysalis novaeguineae (no common name) tick which causesASF.
1.21QTT is regularly seen on the east coast of Australia from the Torres Strait Islands to the south-eastern corner of Victoria, with the northern suburbs of Sydney being a very common location for QTT infection. Common symptoms include fever, headache, tiredness, muscle aches, a rash, and swollen glands near the tick bite. QTT may be severe and have unusual features. Less common symptoms include painful joints, enlarged spleen, abdominal pain, dry cough, sore throat, conjunctivitis, and photophobia. While QTT is not known to affect the central nervous system, there have been reports of confusion, seizures, and hallucinations as symptoms of QTT.
1.22The southern reptile tick is the only known organism that transmits the FISF bacterium, and the only organism in which this bacterium lives, grows and multiplies. FISF has been reported on Flinders Island and on mainland Tasmania; in south-eastern Australia; south western coastal areas of Western Australia; and south-eastern coastal regions of South Australia. FISF symptoms include fever, headache, muscle pain, transient joint pain, rash and occasionally acough.
1.23ASF is a recently recognised Rickettsial infection similar to FISF, and according to the Department of Health and Aged Care (the department), there have only seven confirmed cases identified. The only known tick that can host the bacterium that causes ASF is called Haemaphysalis novaeguineae. This tick does not have a common name. It is known to bite numerous animals, as well as humans, and is found in both northern Australia and Papua New Guinea. These ticks are not known to live in southern Australia. The symptoms of ASF include fever and headache, joint pain, muscle pain andrash.
1.24Q fever is caused by the bacterium Coxiella burnetii, carried by animals such as cattle, sheep, goats, and kangaroos. Humans usually catch the infection by breathing in droplets and dust contaminated by birth fluids, faeces, or urine from infected animals. Tick-to-human transmission occurs infrequently, through tick bites, breathing in tick excreta or direct contact (e.g. removal of ticks from domestic animals, aerosol-generating activities such as shearing, or crushing ticks with bare hands).
Babesiosis
1.25Babesiosis is an infection in both people and animals caused by the Babesia parasite. Babesia infects and damages red blood cells, with symptoms resembling an influenza-like illness with fever, chills, headaches, muscle aches, and fatigue. Jaundice can also occur. Babesiosis can be severe and life-threatening, particularly for those with vulnerabilities such as age, a lack of a spleen, or other illnesses. However, most people with Babesia infections will feel well and not experience symptoms.
1.26Ticks in the Ixodes family (this family includes the Australian paralysis tick, the common marsupial tick, and the southern paralysis tick) are the most common tick linked to babesiosis transmission, although the tick vector has not been identified for all Babesia species and strains.
1.27The small nymph stage of the Ixodes tick is the most likely to carry and spread Babesia parasites to people. Because of their size people may not notice or recall the tick bite. Large adult ticks can also spread the infection but not as commonly as the nymphs.
1.28Babesia infection has been reported worldwide, with most cases reported from the north-east of the United States or from Europe. In 2012, a case of severe babesiosis was reported in an individual from the south coast of New South Wales. This was the first reported human case of babesiosis believed to have been acquired in Australia.
1.29The Babesia parasite causing the infections was identified directly and was found to be closely related to the strain most commonly associated with human babesiosis in North America (Babesia microti). It is not known which type of tick was responsible for transmitting the infection in this case.
1.30It is not known how common it is for the Babesia parasites that cause human disease to infect ticks in New South Wales. It is assumed to be rare, given that only one human case has been reported. It is possible that other cases may have occurred in the past but were not recognised, particularly as most infections cause nosymptoms.
Allergies
1.31As noted above, tick bites can lead to a variety of illnesses in patients, the most common being allergic reactions. In some cases, people can experience severe allergic reactions, and develop mammalian meat allergy/anaphylaxis (MMA or alpha-gal syndrome(AGS)).
1.32Tick allergies can range from mild to life threatening anaphylaxis. In Australia, where tick bites are common, life threatening allergic reactions to ticks are much more common than similarly severe reactions to bees and wasps. Tick allergies are a common cause for attendance at hospital emergency departments in regions where ticks are commonly found. For example, over a two-year period, one hospital in New South Wales recorded over 550 presentations of tick bite to its emergency department, with 34 of these resulting in anaphylaxis, and over 75per cent of these requiring adrenaline use.
1.33Crucially, people only have an anaphylactic reaction to a tick bite when a tick is disturbed while attached to the skin. As such, it is important to kill ticks using ether-containing sprays before removing them.
1.34MMA is a serious, potentially life-threatening allergic reaction that may occur after people eat red meat, (‘mammalian meats’) or are exposed to other products containing alpha-gal, and occurs after a tick bite. ‘Mammalian meats’ means all commonly eaten mammalian meats (such as beef, pork, lamb, kangaroo, and venison). In people with MMA, severe allergic reactions are more common and anaphylaxis can occur in up to 60 per cent of patients.
1.35The allergen associated with MMA is present in the gut, saliva and blood feeding pool of certain species of ticks, including the Australian paralysis tick. More recently the tick Ixodes (Endopalpiger) australiensis has been found to cause MMA in Western Australia. Other areas where ticks are hyperendemic include the Northern Beaches area of Sydney, Maleny in Queensland, Denmark in Western Australia, and down the eastern seaboard of Australia as far as Lakes Entrance in Victoria. Approximately 60 per cent of the Australian population are now potentially exposed to ticks that can lead people to develop MMA ifbitten.
Other illnesses
1.36There are a range of other pathogens carried by ticks, some of which can be transmitted to humans from tick-bites. The presence and transmission of a number of pathogens to humans is contested in the Australian scientific and medical community. The purpose of this section of the report is to outline these illnesses, as a number of submitters raise the possibility of being affected by these pathogens after tick bites both locally and overseas. It is not the intention of the committee to determine whether these pathogens are present or being transmitted to humans from tick bites in Australia or overseas, but to note the concerns ofsubmitters.
Lyme disease
1.37Lyme disease is a bacterial infection transmitted to humans through the bite of an infected tick. Lyme disease is endemic across many countries in the Northern Hemisphere, mainly in the northeast of the United States, some areas of Europe including the United Kingdom, and some parts ofAsia.
1.38Lyme disease-causing bacteria belong to a group of Borrelia bacteria known as the Borrelia burgdorferi complex. Worldwide, there are over 19 types of Borrelia bacteria in this complex. The main species within this group that are recognised as causing Lyme disease include:
Borrelia burgdorferi (in North America, Europe)
Borrelia afzelii (in Europe, China)
Borrelia garinii (in Europe, Asia).
1.39The Australian Government states that ‘scientists have not found Borrelia burgdorferi in Australian ticks despite extensive surveys and research’. As such, ‘unless compelling scientific evidence verifies the presence of Borrelia burgdorferi bacteria in Australia or the native Borreliaspecies is shown to cause Lyme disease, the Australian Government is not in a position to support the diagnosis of locally acquired Lyme disease’.
1.40As such, ‘Lyme disease is only considered clinically relevant in patients with an international travel history to a Lyme disease-endemic area, who are experiencing supporting symptoms, and/or a verified tick bite, and/ or laboratory test results performed by an accredited laboratory’.
1.41Lyme disease is customarily divided into three stages with clinical manifestations varying in occurrence and incidence.
1.42Stage one can include a circular bullseye rash called ‘erythema migrans’ rash (EM), other non-EM rashes, and flu-like symptoms such as headache, fever and joint-pain. Stage two can include symptoms such as multiple EM lesions, nervous system effects such as facial palsy, mild neck stiffness, headache and lymphocytic meningitis. It can also include cardiac issues, and arthritis attacks. Stage three can ‘potentially occur after months to several years following the initial infection though the pathologic mechanism is unclear. It is hypothesised that any ongoing symptoms are more immune related which may or may not be a consequence to the initial infection. Ongoing infection remains a debatable diagnosis by the medical profession globally’.
Anaplasmosis and ehrlichiosis
1.43Human granulocytic anaplasmosis (HGA), formerly known as human granulocytic ehrlichiosis, is an acute febrile disease caused by the rickettsial bacterium Anaplasma phagocytophilum, previously known as Ehrlichia phagocytophilum. This pathogen is transmitted by ticks. The incidence of HGA (cases/million/year) globally jumped from 1.4 in 2000 to 6.1 in 2010 and 6.3 in 2012. Although, there have been no reports of HGA in Australia, data is limited. Further investigation would be required to determine whether ticks in Australia can act as a vector.
1.44Human monocytic ehrlichiosis (HME) is a rare infectious tick-borne infection caused by bacteria from the Ehrlichia family. There are several forms of human ehrlichiosis, each of which is caused by a different strain of the bacteria, and they are often carried by different species of tick. Human ehrlichiosis is found in countries around the world, including the US. Within Australia there are as yet no reports of HME.
1.45Anaplasma and Ehrlichia species have been detected in Australian paralysis ticks and ornate kangaroo ticks. Further research is required to determine if these species can cause disease in humans and animals.
Bartonellosis
1.46The three most common diseases caused by the genus Bartonella are Carrion’s disease, cat scratch disease and Trench fever, with the diseases transmitted when humans are scratched by domestic or feral cats or by contact with arthropods including body lice, fleas and sand flies. Symptoms and signs include: a papule or pustule at the site of the bite; abdominal pain; bone pain; fever; enlarged lymph nodes; headache; rash; lesions in the skin, subcutaneous tissue, bone or other organs; vascular lesions in the liver and spleen; severe anaemia; and subacute endocarditis.
1.47Additionally, it is now recognised that Bartonella may cause a wide spectrum of other symptoms in some patients and that these may mimic a Lyme-like illness including rheumatic manifestations, fibromyalgia and chronic fatigue syndrome, neurological disease and endocarditis.
1.48Bartonella species occur in both domestic and wild animals in Australia. Bartonella clarridgeiae and B. henselae, the causative agents of cat scratch disease, are found in cats, fleas and humans in Australia though these two species are most frequently transmitted to humans by cat fleas rather than ticks.
1.49Several Bartonella species have been reported in ticks and fleas collected from marsupial hosts, including brush-tailed bettong or woylie, western barred bandicoots, yellow-footed antechinus, and eastern grey kangaroos as well as from various rodents as hosts. However, it is uncertain whether these species of Bartonella can cause human disease, or whether the tick-vectors bite humans.