A patient perspective Submission to the Senate Inquiry on the Growing Evidence of an emerging tick-borne disease that causes a Lyme-like illness for many Australian patients Lyme Disease Association of Australia March 2016 “In the fullness of time, the mainstream handling of chronic Lyme disease will be viewed as one of the most shameful episodes in the history of medicine because elements of academic medicine, elements of government and virtually the entire insurance industry have colluded to deny a disease. This has resulted in needless suffering of many individuals who deteriorate and sometimes die for lack of timely application of treatment or denial of treatment beyond some arbitrary duration”. Dr Kenneth B. Leigner Table of Contents Background ................................................................................................................................. 4 Introduction ................................................................................................................................ 4 What’s in a name? .............................................................................................................................. 5 Executive summary ...................................................................................................................... 6 Recommendations .............................................................................................................................. 8 (A) ToR the prevalence and geographic distribution of Lyme-like illness in Australia .................... 10 A 1. Disease surveillance ................................................................................................................... 10 A 2. Prevalence ................................................................................................................................. 13 A 3. Prevalence and geographic distribution conclusion .................................................................. 17 (B) ToR methods to reduce the stigma associated with Lyme-like illness for patients, doctors and researchers ................................................................................................................................ 19 B 1. Nomenclature associated stigma ............................................................................................... 19 B 2. Stigma resulting from derogatory language .............................................................................. 21 B 3. Treatment related stigma .......................................................................................................... 22 B 4. Research associated stigma ....................................................................................................... 24 B 5. Medico-legal related stigma ...................................................................................................... 25 (C) TOR 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 ................................................................................. 32 C 1.An examination of the Australian guideline on the diagnosis of overseas Lyme disease / Borreliosis ......................................................................................................................................... 32 C 2. Pathology testing in Australia produces discordant results ...................................................... 37 C 3. The use of overseas laboratories in testing for Lyme disease in Australian patients ................ 41 C 4. The pathology accreditation process in Australia appears conflicted ....................................... 43 C 5. International coordination of laboratory accreditation ............................................................ 43 C 6. Other diagnostic tests that could aid in the detection of Lyme disease ................................... 44 C 7. Unanswered questions regarding pathology testing in Australia .............................................. 44 C 8. Diagnostic processes require urgent review .............................................................................. 46 (D) ToR evidence of investments in contemporary research into Australian pathogens specifically acquired through the bite of a tick and including other potential vectors .................................... 47 D 1. Murdoch University - Investigations into Babesiosis ................................................................. 47 D 2. Murdoch University -Investigations into Lyme Borreliosis, Bartonellosis and Rickettsiosis ...... 48 1 | Page D 3. Murdoch University - Molecular toolkits to investigate zoonotic tick-borne pathogens ......... 48 D 4. Historical evidence of Borrelia in Australia is systematically ignored ....................................... 49 D 5. Research recommendations ...................................................................................................... 51 D 6. Other vectors ............................................................................................................................. 52 D 7. Options for contemporary research into Australian Pathogens ............................................... 52 (E)ToR potential investment into research to discover unique local causative agents causing a growing number of Australian’s debilitating illness ..................................................................... 54 E 1. Investments into multiple sclerosis research total $2.75 million .............................................. 54 E 2. International research to discover unique local causative agents ............................................. 55 E 3. Research to cover epidemiology of disease through the study of patients .............................. 55 E 4. Recommendations to prioritise investments into research into unique causative agents in Australia ............................................................................................................................................ 55 (F) ToR the signs and symptoms Australians with Lyme-like illness are enduring, and the treatment they receive from medical professionals ..................................................................................... 57 F 1. Signs and symptoms ................................................................................................................... 57 F 2. The treatment of patients with Lyme-like illness ....................................................................... 61 F 3. The treatment patients received from medical professionals ................................................... 67 F 4. Costs to government .................................................................................................................. 80 F 5. Conclusions on the signs, symptoms and treatment of patients ............................................... 80 (G) ToR any other related matters .............................................................................................. 81 G 1. Risk of transmission through blood transfusion ........................................................................ 81 G 2. Other forms of transmission ...................................................................................................... 81 G 3. Australia’s international obligations .......................................................................................... 82 Appendices ................................................................................................................................ 84 APPENDIX 1. ...................................................................................................................................... 85 APPENDIX 2 ....................................................................................................................................... 86 APPENDIX 3 ....................................................................................................................................... 90 APPENDIX 4 ....................................................................................................................................... 91 References ............................................................................................................................... 101 2 | Page Index of Figures and tables Figure 1: illustration of the timeline of Borrelia discovery in Australia ................................................ 11 Figure 2: Demographic profile of Australian patients ........................................................................... 13 Figure 3: Distribution of patients with positive diagnosis of Lyme disease .......................................... 14 Figure 4: Google search terms - Lyme Disease Australia ...................................................................... 15 Figure 5: Estimated cases per year - lyme, breast cancer, HIV & MS ................................................... 16 Figure 6: Location of reported tick bites from patients with Lyme disease ......................................... 17 Figure 7: Borrelia Burgdorferi vs the constellation of pathogens found in Australian ticks ................. 20 Figure 8: Hospital related treatment difficulties .................................................................................. 23 Figure 9: Overview of AHPRA’s performance across key functions