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Footnotes

Footnotes

Chapter 1 - Introduction

[1]        Mr Matt Chant, Committee Hansard, Brisbane, 15 April 2016, p. 15.

[2]        Journals of the Senate, No. 126–12 November 2015, p. 3380.

[3]        Department of Health, Submission 495, p. 2.

[4]        Professor John Mackenzie, Scoping study to develop a research project(s) to investigate the presence or absence of Lyme disease in Australia, 30 September 2013, p. 6, http://www.health.gov.au/lyme-disease (accessed 19 November 2015).

[5]        The committee notes that a number of other Borrelia species (not associated with Lyme disease) may cause a range of different diseases in humans and animals, such as B. recurrentis, B. duttonii, B. hermsii and B. turicatae (causes relapsing fever and transmitted to humans by lice and ticks in parts of Africa, Asia, southern Europe, North and South America); B. theileri (causes bovine borreliosis in cattle and transmitted by cattle ticks); B. lonestari (causes STARI – southern tick-associated rash illness – in the US); B. miyamotoi (found throughout Eurasia and the US and its role in human disease only recently demonstrated in Russia). See: Mackenzie, Scoping study, pp 12–13.

[6]        Mackenzie, Scoping study, p. 5.

[7]        Mackenzie, Scoping study, p. 5.

[8]        US Centers for Disease Control and Prevention (CDC), 'How many people get Lyme disease?' http://www.cdc.gov/lyme/stats/humancases.html (accessed 9 December 2015).

[9]        US CDC, 'CDC provides estimate of Americans diagnosed with Lyme disease each year', 19 August 2013, http://www.cdc.gov/media/releases/2013/p0819-lyme-disease.html (accessed 21 April 2016).

[10]      CDNA, Submission 531, pp 1–2.

[11]      Infectious Disease Society of America, 'Lyme Disease', http://www.idsociety.org/Lyme/ (accessed 8 December 2015). See: Gary Wormer et al, 'The Clinical Assessment, Treatment, and Prevention of Lyme Disease, Human Granulocytic Anaplasmosis, and Babesiosis: Clinical Practice Guidelines by the Infectious Diseases Society of America', Clinical Infectious Diseases, vol. 43, no. 9, pp 1089–1134, http://cid.oxfordjournals.org/content/43/9/1089.full (accessed 8 December 2015).

[12]      Department of Health, 'An Australian guideline on the diagnosis of overseas acquired Lyme Disease/Borreliosis', August 2015, http://www.health.gov.au/lyme-disease (accessed 27 April 2016). See: Submission 495, Attachment K.

[13]      See for example: HM Feder et. al, 'A critical appraisal of "chronic Lyme disease"', New England Journal of Medicine, v. 357, 2007, pp 1422–1430, http://www.nejm.org/doi/full/10.1056/NEJMra072023 (accessed 21 April 2016); Adriana Marques, 'Chronic Lyme Disease: An appraisal', Infectious Disease Clinics of North America, v. 22, n. 2, June 2008, pp 341–360, http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2430045/ (accessed 21 April 2016).

[14]      Department of Health, Submission 495, p. 2.

[15]      See: Lyme Disease Association of Australia (LDAA) Submission 528, Australian Chronic Infectious and Inflammatory Disease Society (ACIIDS) Submission 370, Dr Richard Schloeffel Submission 2, and Dr Hugh Derham Submission 453.

[16]      International Lyme and Associated Diseases Society, 'About Us', http://www.ilads.org/ilads/about-ilads.php (accessed 8 December 2015).

[17]      LDAA, Submission 528, p. 57.

[18]      ACIIDS, Submission 370, p. [11].

[19]      National Institute of Allergy and Infectious Diseases, 'Chronic Lyme Disease', http://www.niaid.nih.gov/topics/lymeDisease/Pages/chronic.aspx (accessed 1 December 2015).

[20]      'Post-Treatment Lyme Disease Syndrome', US Centers for Disease Control and Prevention, http://www.cdc.gov/lyme/postlds/index.html (accessed 1 December 2015).

[21]      Dr Gary Lum, Department of Health, Committee Hansard, Canberra, 20 April 2016, p. 10.

[22]      See: NSW Health, Submission 457; Australasian Society for Infectious Diseases Inc, Submission 496; Royal Australasian College of Physicians, Submission 754; Royal College of Pathologists Australasia, Submission 532.   

[23]      NSW Health, Submission 457, p. 1.

[24]      Lyme Disease Association of Australia, Submission 528, p. 5.

[25]      Ms Rebecca Vary, Committee Hansard, Perth, 14 April 2016, p. 18.

[26]      See: WA Department of Health, Submission 529; Victorian Department of Health and Human Services, Submission 547; NSW Health, Submission 457.

[27]      Communicable Diseases Network Australia, Submission 531, p. 1.

[28]      Dr Gary Lum, Committee Hansard, Canberra, 20 April 2016, p. 5.

[29]      Professor Chris Baggoley, Estimates Hansard, 10 February 2016, p. 19.

[30]      Australian Medical Association (AMA), Submission 456, p. 4.

[31]      For terms of reference, see: Department of Health, Clinical Advisory Committee on Lyme Disease (CACLD), http://www.health.gov.au/internet/main/publishing.nsf/Content/ohp-cacld-lyme-disease.htm (accessed 18 November 2015).

[32]      Professor Chris Baggoley AO, Chief Medical Officer, Progress Report on Lyme Disease in Australia, 31 July 2014, http://www.health.gov.au/lyme-disease (accessed 18 November 2015).

[33]      Professor John Mackenzie, Scoping study to develop a research project(s) to investigate the presence or absence of Lyme disease in Australia, 30 September 2013, p. 4, http://www.health.gov.au/lyme-disease (accessed 19 November 2015).

[34]      Department of Health, Lyme Disease Treatment Round Table Meeting, 27 May 2014, http://www.health.gov.au/lyme-disease (accessed 19 November 2015).

[35]      See: Department of Health, An Australian guideline on the diagnosis of overseas acquired Lyme Disease/Borreliosis, August 2015, http://www.health.gov.au/lyme-disease (accessed 7 January 2015).

[36]      Professor Chris Baggoley AO, Chief Medical Officer, Progress Report on Lyme Disease in Australia, 20 August 2015, http://www.health.gov.au/lyme-disease (accessed 18 November 2015).

[37]      Department of Health, Response to question on notice SQ15-000771, Supplementary Estimates, 21 October 2015 (received 11 December 2015).

[38]      The Healthier Medicare package is a core part of the Australian Government's response to the recommendations of the Department of Health's Primary Health Care Advisory Group Report, Better Outcomes for people with Chronic and Complex Health Conditions, December 2015. See: http://www.health.gov.au/internet/main/publishing.nsf/Content/primary-phcag-report (accessed 22 April 2016).

[39]      Department of Health, 'A Healthier Medicare for chronically-ill patients', Joint Media Release, 31 March 2016, https://www.health.gov.au/internet/ministers/publishing.nsf/Content/health-mediarel-yr2016-ley021.htm (accessed 22 April 2016).

[40]      Repatriation Medical Authority, Notice of Investigation: Section 196G of the Veterans' Entitlements Act 1986, 12 May 2015, http://www.rma.gov.au/investigations/year/2015 (accessed 4 December 2015).

[41]      Repatriation Medical Authority, Lyme Disease, 4 April 2016, http://www.rma.gov.au/sops/condition/lyme-disease (accessed 21 April 2016).

[42]      Explanatory Statement, Statement of Principles concerning Lyme disease (Reasonable Hypothesis) (no. 25 of 2016), 4 April 2016, http://www.rma.gov.au/sops/condition/lyme-disease (accessed 21 April 2016).

[43]      House of Representatives Standing Committee on Health, Inquiry into Chronic Disease Prevention and Management in Primary Health Care, http://www.aph.gov.au/Parliamentary_Business/Committees/House/Health/Chronic_Disease (accessed 7 December 2015).

[44]      See: Senator Claire Moore, Senate Hansard, No. 9–20 August 2015, p. 5885; Mr Ken Wyatt MP, House of Representatives Hansard, Federation Chamber, 20 August 2015, p. 9114; Ms Gai Brodtmann MP, House of Representatives Hansard, Federation Chamber, 17 August 2015, p. 8614; Ms Jill Hall MP, House of Representatives Hansard, Federation Chamber,17 August 2015, pp 8586–8589; Mr Stephen Jones MP, House of Representatives Hansard, Federation Chamber, 17 August 2015, pp 8586–8587; Ms Jill Hall MP, House of Representatives Hansard, Federation Chamber, 28 May 2015, p. 5137; Mr John Murphy MP, House of Representatives Hansard, 15 May 2015, p. 3346.

[45]      This indicates those submitters who provided their postal address and whose submissions were accepted and published by 30 April 2016. This includes all submissions from each jurisdiction, including over 900 personal submissions, 28 submissions from organisations and a number of submissions from medical practitioners.

[46]      See, for example: Submission 121, Submission 178, Submission 202, and Submission 614.

[47]      See, for example: Submission 1014, Submission 277, Submission 548, Submission 700, Submission 615, Submission 262, and Submission 184. 

[48]      See, for example: Submission 606, Submission 164, Submission 324, and Submission 595.

[49]      Due to the large amount of criticism of medical practitioners made in submissions, the committee decided to redact the names of all practitioners, practices and hospitals from submissions.

[50]      At its hearings in Perth, the committee heard from Ms Michelle Nettle and Ms Carol Adams whose children had taken their own lives following a long battle with chronic debilitating symptoms. See: Committee Hansard, Perth, 14 April 2016, pp 47–49.

[51]      Mrs Meaghan Sullivan, Committee Hansard, Brisbane, 15 April 2016, p. 18.

[52]      To protect the privacy of children, the committee decided to redact the names of all children named in submissions. The committee also decided to accept any submission from children as unpublished correspondence.

[53]      Ms Marie Huttley-Jackson, Submission 415, p. 3.

[54]      Submission 519, p. [1].

[55]      The committee heard that in Western Australia, relapsing fever (caused by a different species of Borrelia) was removed from the list of notifiable diseases in 2007 as no cases had been reported. The WA Department of Health advised that the removal of relapsing fever from the list of notifiable diseases was in accordance with the CDNA's guidelines and criteria for assessing whether an infectious disease should be notifiable. See WA Department of Health, Response to question on notice, received 22 April 2016.

[56]      CDNA, Submission 531, p. 7.

[57]      Victorian Department of Health and Human Services (DHHS), Submission 547, p. 1.

[58]      See, for example: Global Lyme and Invisible Illness Organisation / Lyme Australia Recognition and Awareness, Submission 822, p. 8.

[59]      Ms Elaine Kelly, Committee Hansard, Perth, 14 April 2016, p. 9.

[60]      According to these surveys, Lyme-like illness disproportionately affects women (73 per cent of respondents were female compared to 27 per cent male). See: LDAA, Submission 528, p. 13.

[61]      Ms Sharon Whiteman, Committee Hansard, Brisbane, 15 April 2016, p. 2.

[62]      WA Department of Health, Submission 529, p. 1.

[63]      Ms Sharon Whiteman, Committee Hansard, Brisbane, 15 April 2016, p. 5.

[64]      Ms Rebecca Bool, Committee Hansard, Perth, 14 April 2016, p. 26.

Chapter 2 - Experience of patients and access to treatment

[1]        See: Submission 42; Submission 298.

[2]        See: Submission 123; Submission 287.

[3]        See: Submission 405, Submission 586; Submission 834.

[4]        See, for example: Submission104; Submission 149; Submission 206; Submission 295; Submission 320.

[5]        See, for example: Submission 110; Submission 116; Submission 186.

[6]        See, for example: Submission 19; Mr Paul Fenwick, Submission 27; Ms Christine Linigen, Submission 70; Submission 72; Submission 104; Ms Natalie Young, Submission 140; Submission 142; Submission 143; Submission 149; Submission 163; Submission 169; Submission 198; Submission 206.

[7]        See, for example: Submission 114; Submission 170; Submission 178; Submission 196.

[8]        Dr Gary Lum, Committee Hansard, Canberra, 20 April 2016, pp 2–3.

[9]        Name withheld, Submission 298, p. 2.

[10]      See: Name withheld, Submission 519, pp 2–3.

[11]      Dr Gary Lum, Committee Hansard, Canberra, 20 April 2016, p. 2.

[12]      Dr Gary Lum, Committee Hansard, Canberra, 20 April 2016, p. 13.

[13]      See, for example: Department of Health, Submission 495; Western Australian Department of Health, Submission 529; Victorian Department of Health and Human Services (DHHS), Submission 547; Royal College of Pathologists of Australasia, Submission 532.

[14]      Submission 495, p. 2.

[15]      Professor Chris Baggoley, Progress Report on Lyme Disease in Australia, 31 July 2014, http://www.health.gov.au/lyme-disease (accessed 3 May 2016).

[16]      See: Communicable Diseases Network Australia (CDNA), Submission 531; Royal Australasian College of Physicians, Submission 754; Australian Society for Microbiology, Submission 781; NSW Health, Submission 457; Victorian DHHS, Submission 547.

[17]      RCPA, Position statement: Diagnostic Laboratory testing for Borreliosis ('Lyme Disease' or similar syndromes) in Australia and New Zealand, February 2014, http://www.rcpa.edu.au/Library/College-Policies/Position-Statements/Diagnostic-Laboratory-testing-for-Borreliosis-Lyme (accessed 7 December 2015).

[18]      Professor Chris Baggoley, Progress Report on Lyme Disease in Australia, 31 July 2014, http://www.health.gov.au/lyme-disease (accessed 3 May 2016).

[19]      Dr Gary Lum, Committee Hansard, Canberra, 20 April 2016, p. 2.

[20]      R.C. Russell et al, 'Lyme disease: a search for a causative agent in ticks in south-eastern Australia', Epidemiology and Infections, v. 122, n. 2, 1994, p. 376, https://www.jstor.org/stable/3864539 (accessed 11 January 2015).

[21]      Paper provided to the committee by Professor John Mackenzie: Melissa Judith Chalada, John Stenos, Richard Stewart Bradbury, 'Is there a Lyme-like disease in Australia', One Health, 2016, Volume 2, pp 42–54, http://www.sciencedirect.com/science/article/pii/S2352771416300039 (accessed 20 April 2016).

[22]      See, for example: 'The brutal bite of a hidden illness in Australia', Sunday Times Magazine (WA), 18 April 2016, http://www.perthnow.com.au/news/western-australia/stm/the-brutal-bite-of-a-hidden-illness-in-australia--lyme-disease/news-story/7eff05d29199ba092742fd5ff9f23266 (accessed 29 April 2016); ' Lyme disease: Australians "being treated worse than a dog riddled with mange,"' ABC Online, 12 January 2015, http://www.abc.net.au/news/2016-01-11/lyme-disease-treatment-in-australia-criticised-by-john-madigan/7080708 (accessed 18 January 2015), 'Canberra family ticked off about lack of recognition of Lyme disease', Canberra Times, 24 December 2015, http://www.canberratimes.com.au/act-news/canberra-family-ticked-off-about-lack-of-recognition-of-lyme-disease-20151217-glpovr.html (accessed 5 January 2015); 'Lyme disease from tick bite but the doctors say it doesn't exist', Courier Mail, 15 November 2015 (accessed 5 January 2015); 'Lyme disease: Federal MP calls for greater recognition of tick-borne illness affecting "thousands"', ABC Online, 22 August 2015, http://www.abc.net.au/news/2015-08-20/federal-parliament-calls-for-lyme-disease-recognition/6710810 (accessed 5 January 2015).

[23]      Lyme Disease Association of Australia (LDAA), Submission 528, p. 6.

[24]      See: Peter Mayne, 'Emerging incidence of Lyme borreliosis, babesiosis, bartonellosis, and granulocytic ehrlichiosis in Australia', International Journal of General Medicine, v. 4, 2011, pp 850–851, https://www.dovepress.com/articles.php?article_id=19731 (accessed 7 January 2015); Peter Mayne et al, 'Evidence for Ixodes holocyclus (Acarina: Ixodidae) as a Vector for Human Lyme Borreliosis Infection in Australia', Journal of Insect Science, v. 14, 2014, p. 3, http://jinsectscience.oxfordjournals.org/content/14/1/271 (accessed 7 January 2015).

[25]      Communicable Diseases Network Australia (CDNA), Submission 531, pp 5–6.

[26]      Dr Mualla McManus, Committee Hansard, Brisbane, 15 April 2016, p. 28.

[27]      See, for example: Australian Medical Association (AMA), Submission 456; Australian Society for Microbiology, Submission 781; Australian Rickettsial Reference Laboratory Foundation, Submission 459; CDNA, Submission 531.

[28]      Professor Stephen Graves, Committee Hansard, Brisbane, 15 April 2016, p. 45.

[29]      Professor Stephen Graves, Committee Hansard, Brisbane, 15 April 2016, p. 46.

[30]      Dr Margaret Hardy, Committee Hansard, Brisbane, 15 April 2016, p. 39.

[31]      LDAA, Submission 528, pp 57–58.

[32]      Submission 528, p. 58.

[33]      Ms Linda Ebden, Committee Hansard, Perth, 14 April 2016, p. 24.

[34]      Ms Natalie Young, Submission 140, p. 4.

[35]      Professor Peter Collignon, Committee Hansard, Perth, 14 April 2016, p. 31.

[36]      Department of Health, Preventing and treating tick bites, October 2015, http://www.health.gov.au/lyme-disease (accessed 20 November 2015).

[37]      Professor Stephen Graves, Committee Hansard, Brisbane, 15 April 2016, p. 45.

[38]      The first reported case of human babesiosis acquired in Australia was published in 2012. See: Sanjaya Senanayake et al, 'First report of human babesiosis in Australia', Medical Journal of Australia, v. 196, 2012, pp 350–352. See: Professor Peter Collignon, Submission 458, Attachment B.

[39]      Mackenzie, Scoping study, pp 17–19.

[40]      Professor Stephen Graves, Committee Hansard, Brisbane, 15 April 2016, p. 46.

[41]      Professor Peter Collignon, Committee Hansard, Perth, 14 April 2016, pp 34–35.

[42]      See: Submission 495, Attachment I. In his 2015 progress report on the Clinical Advisory Committee on Lyme Disease (CACLD), sent to the President of the Australian Medical Association and presidents of relevant medical colleges, the Chief Medical Officer advised that this prevention document was being prepared and would be available from the department's website. See: Submission 495, Attachment J.

[43]      Dr Gary Lum, Committee Hansard, Canberra, 20 April 2016, pp 2–3.

[44]      See, for example: LDAA, Submission 528; Lyme Australia Recognition and Awareness; and Global Lyme and Invisible Illness Organisation Inc, Submission 822; ME/CFS and Lyme Association of WA, Submission 802.

[45]      See, for example: Submission 1085; Submission 571; Submission 948; Submission 164.

[46]      Name Withheld, Submission 82, p. [1].

[47]      Ms Emily O'Sullivan, Submission 15, p. [2].

[48]      Lyme Disease Association of Australia, Submission 528, p. 19.

[49]      Lyme Disease Association of Australia, Submission 528, p. 19.

[50]      See: Submission 12; Submission 447.

[51]      ACIIDS, Submission 370, p. 5.

[52]      Name Withheld, Submission 296, p. [3].

[53]      Mr Carl Jackson, Submission 416, pp [3-4].

[54]      Dr Richard Schloeffel, Committee Hansard, Brisbane, 15 April 2016, p. 24.

[55]      Submission 459, p. 2.

[56]      Professor Samuel Zagarella, Committee Hansard, Perth, 14 April 2016, p. 31.

[57]      Dr Lance Sanders, Submission 452, p. 4.

[58]      Dr Gary Lum, Department of Health, Committee Hansard, 20 April 2016, p. 5. See: Matthew Dryden et al, 'Lyme borreliosis in southern United Kingdom and a case for a new syndrome, chronic arthropod-borne neuropathy', Epidemiology and Infection, v. 143, n. 3, February 2015, pp 561–572, http://dx.doi.org/10.1017/S0950268814001071 (accessed 23 April 2016).

[59]      Dr Richard Horowitz uses the name Multiple Systemic Infectious Disease Syndrome to represent 'sixteen potential overlapping medical problems contributing to persistent symptoms in the Lyme patient'. Dr Horowitz reports to have seen over 12,000 chronically ill patients from around the world, including Australia. See: Dr Richard Horowitz, Submission 936, pp 1–2.

[60]      See: Ms Kate Daniels, Committee Hansard, Perth, 15 April 2016, p. 13.

[61]      Dr Gary Lum, Department of Health, Committee Hansard, 20 April 2016, p. 5.

[62]      See: Submission 91; Submission 396; Submission 550; LDAA, Submission 528; Global Lyme & Invisible Illness Organisation / Lyme Australia Recognition & Awareness, Submission 822.

[63]      See: Global Lyme and Invisible Illness Organisation / Lyme Australia Recognition and Awareness, Submission 822, p. 27.

[64]      Mr Matt Chant, Committee Hansard, Brisbane, 15 April 2016, p. 14.

[65]      See: Australian Medical Association, Submission 456, p. 4.

[66]      See, for example: Submission 136; Submission 203.

[67]      See, for example: Submission 101.

[68]      See, for example: Submission 67; Submission 119; Submission 123; Submission 156.

[69]      See: Ms Christine Linigen, Submission 70. Other submitters have spent between $20,000 and $50,000 on treatment. See: Submission 85, Submission  105; Submission 121; Submission 253; Submission 259.

[70]      See, for example: Submission 177; Submission 197; Submission 201; Submission 353.

[71]      Submission 241, p. 9.

[72]      See, for example: Submission 111; Submission 125; Submission 150; Submission 172; Submission 187.

[73]      See, for example: Submission 125; Submission 129; Submission 140; Submission 150. Evidence from submitters indicates that the outcomes of these overseas treatments differ widely. One submitter received hypothermia treatment along with other treatments at the German clinic and experienced a significant improvement in their health, which included increased energy, improved balance and improved cognitive ability.  Another submitter who also received treatment at the clinic expressed only a limited improvement in their condition. See: Submission 24 and Submission 38.

[74]      See, for example: Submission 447; Submission 615; Submission 1045; Submission 1094; Submission 152.

[75]      See, for example: Submission 127; Submission 198; Submission 304; Submission 333.

[76]      Department of Health, Submission 495, p. 3.

[77]      Royal Australasian College of Physicians, Submission 754, p. 2.

[78]      See, for example: NSW Health, Submission 457, p. 4; Royal Australasian College of Physicians, Submission 754, p. 2; Victorian Department of Health and Human Services, Submission 547, p. 5; Australasian Society for Infectious Diseases, Submission 496, p. [3].

[79]      Name withheld, Submission 462, p. 1.

[80]      WA Department of Health, Submission 529, p. 5.

[81]      Professor Samuel Zagarella, Response to question on notice, received 14 April 2016. See: Anneleen Berende et al, 'Randomized Trial of Longer-Term Therapy for Symptoms Attributed to Lyme Disease', New England Journal of Medicine, v. 374, n. 13, 31 March 2016, p. 1209.

[82]      RCPA, Submission 532, p. 10.

[83]      Dr Richard Schloeffel, Committee Hansard, Brisbane, 15 April 2016, p. 20.

[84]      See: Mr Greg Watts, Submission 9; Submission 12; Submission 77; Mr Chris Willis, Submission 127; Submission 136; Submission 165.

[85]      To address these concerns, the committee decided to redact the names of all doctors named in submissions, including Lyme literate practitioners.

[86]      Mr John Curnow, Submission 351, p. 1.

[87]      LDAA, Submission 528, p. 25.

[88]      LDAA, Submission 528, p. 28.

[89]      Dr Adam Nuttall, Submission 601, p. 2.

[90]      Name withheld, Submission 23, p. [1]. See also: Submission 109.

[91]      Associate Professor Stephen Bradshaw, AHPRA, Committee Hansard, 15 April 2016, p. 62.

[92]      AMA, Submission 456, p. 5.

[93]      Associate Professor Stephen Bradshaw, AHPRA, Committee Hansard, 15 April 2016, p. 62.

[94]      MBA and AHPRA, Response to question on notice, received 26 April 2016.

[95]      Medical Board of Australia and Australian Health Practitioner Regulation Agency,   Submission 533, p. 3.

[96]      Associate Professor Stephen Bradshaw, AHPRA, Committee Hansard, 15 April 2016, p. 66.

Chapter 3 - Diagnostic testing for Lyme-like illness

[1]        Department of Health, An Australian guideline on the diagnosis of overseas acquired Lyme Disease/Borreliosis, August 2015, http://www.health.gov.au/lyme-disease (accessed 1 December 2015).

[2]        Royal College of Pathologists Australasia (RCPA), Position statement: Diagnostic Laboratory testing for Borreliosis ('Lyme Disease' or similar syndromes) in Australia and New Zealand, February 2014, http://www.rcpa.edu.au/Library/College-Policies/Position-Statements/Diagnostic-Laboratory-testing-for-Borreliosis-Lyme (accessed 7 December 2015).

[3]        See, for example: Royal Australia College of Physicians, Submission 754; Australian Society for Microbiology, Submission 781; WA Department of Health, Submission 529; NSW Health, Submission 457; Victorian Department of Health and Human Services, Submission 547.

[4]        Department of Health, An Australian guideline on the diagnosis of overseas acquired Lyme Disease/Borreliosis, August 2015,  http://www.health.gov.au/lyme-disease (accessed 1 December 2015).

[5]        Professor John Mackenzie, Scoping study to develop a research project(s) to investigate the presence or absence of Lyme disease in Australia, 30 September 2013, p. 15.

[6]        Barbara Johnson, 'Laboratory diagnostic testing for Borrelia burgdorferi infection', in Lyme Disease: An Evidence Based Approach, John Halperin (ed.), CABI International, 2011, p. 73, http://www.cdc.gov/lyme/resources/Halperin_2012_Chap4_JohnsonB.pdf (accessed 9 December 2015).

[7]        RCPA, Position statement: Diagnostic Laboratory testing for Borreliosis ('Lyme Disease' or similar syndromes) in Australia and New Zealand, February 2014, p. 4.

[8]        National Association of Testing Authorities (NATA), 'Types of Accreditation', http://www.nata.com.au/nata/accreditation-info/types-of-accreditation (accessed 8 December 2015).

[9]        Dr Gary Lum, Principal Medical Adviser, Estimates Hansard, 21 October 2015, p. 14.

[10]      Public Health Laboratory Network (PHLN), Submission 319, p. 1.

[11]      PHLN, Submission 319, p. 2.

[12]      RCPA, Position statement: Diagnostic Laboratory testing for Borreliosis ('Lyme Disease' or similar syndromes) in Australia and New Zealand, February 2014, pp 2–3.

[13]      See, for example: Ms Michelle Wood, Submission 129; Submission 282; Submission 307; Submission 508.

[14]      See, for example: Submission 67; Submission 119; Submission 123; Submission 156; Submission 303; Submission 403; Submission 616; Submission 853.

[15]      Dr Hugh Derham, Committee Hansard, Perth, 14 April 2016, p. 41.

[16]      Submission 101, p. 2.

[17]      Ms Jennie Burke, Committee Hansard, Brisbane, 15 April 2016, p. 56.

[18]      Submission 545, pp 1–2.

[19]      See, for example: Submission 103; Submission 104; Submission 112; Submission 122.

[20]      See: Submission 362.

[21]      RCPA, Submission 532, p. 9.

[22]      At its hearing in Brisbane, Ms Burke alleged that the CEO of NATA told her during a meeting that "We do not believe that you are detecting Borrelia". See: Ms Jennie Burke, Committee Hansard, Brisbane, 15 April 2016, p. 57.

[23]      Mr John Mitchell, Committee Hansard, Canberra, 20 April 2016, p. 19.

[24]      See: Dr Hugh Derham and Dr Adam Nuttall, Committee Hansard, Perth, 14 April 2016, pp 40–46; Dr Peter Dobie and Dr Richard Schloeffel, Committee Hansard, Brisbane, 15 April 2016, pp 19–27.

[25]      Dr Peter Dobie, Committee Hansard, Brisbane, 15 April 2016, p. 19.

[26]      Dr Peter Dobie, Committee Hansard, Brisbane, 15 April 2016, p. 19.

[27]      Dr Mualla McManus, Committee Hansard, Brisbane, 15 April 2016, p. 29.

[28]      Mackenzie, Scoping study, p. 15.

[29]      RCPA, Submission 532, p. 7.

[30]      See: Dr Gary Lum, Estimates Hansard, 21 October 2015, p. 12; RCPA, Position Statement, February 2014. Dr Lum has previously told the Community Affairs Legislation Committee that 'when serologically less stringent interpretive criteria are employed along with poor predictive value associated with testing a low prevalence population with nonspecific symptoms, reactive serological results should be viewed cautiously'. See: Community Affairs Legislation Committee, Additional Estimates 2015-16, Response to question on notice SQ16‑000221, received 4 April 2016.

[31]      Dr Gary Lum, Committee Hansard, Canberra, 20 April 2016, p. 6.

[32]      RCPA, Submission 532, p. 9.

[33]      Professor Stephen Graves, Committee Hansard, Brisbane, 15 April 2016, p. 51.

[34]      See: Dr Peter Dobie, Committee Hansard, Brisbane, 15 April 2016, p. 20.

[35]      Ms Rebecca Vary, Committee Hansard, Perth, 14 April 2016, p. 19.

[36]      Mr John Mitchell, Committee Hansard, Canberra, 20 April 2016, p. 19.

[37]      Australian Rickettsial Reference Laboratory, Submission 459, p. 4.

[38]      Professor Stephen Graves, Committee Hansard, Brisbane, 15 April 2016, p. 48.

[39]      Dr Gary Lum, Committee Hansard, Canberra, 20 April 2016, p. 8.      

[40]      Professor John Mackenzie, Response to Question on Notice, received 21 April 2016.

[41]      The National Serology Reference Laboratory (NRL) is a not-for-profit scientific organisation that was established in 1985 as part of the Australian Government's HIV/AIDS Strategy, to evaluate HIV tests and adjudicate on the interpretation of HIV test results.  The NRL's overall goal is 'to support laboratories, in Australia and internationally, that perform testing for the diagnosis and management of human infectious disease'. See: http://www.nrl.gov.au/About+Us (accessed 26 April 2016).

[42]      Submission 495, p. 3. The department advised that a progress report on the status of this project is due on 31 July 2016, with the final report due on 31 January 2017.

[43]      The ten laboratories approached and invited to participate include: Australian Red Cross Blood Service; the Australian Rickettsial Reference Laboratory; the Institute for Clinical Pathology and Medical Research; Sullivan Nicolaides Pathology; Australian Biologics; Pacific Laboratory Medicine Service; IGeneX (USA); Infectolab (Germany); Arminlab (Germany); and Rare and Imported Pathogens Laboratory. See: Community Affairs Legislation Committee, Additional Estimates 2015-16, Response to question on notice SQ16-000219, received 4 April 2016.

[44]      Submission 495, p. 3.

Chapter 4 - Next steps for further investigation

[1]        See: Department of Health, Submission 495.

[2]        Professor Chris Baggoley, Chief Medical Officer, Estimates Hansard, 21 October 2015, p. 15.

[3]        Professor John Mackenzie, Scoping study to develop a research project(s) to investigate the presence or absence of Lyme disease in Australia, 30 September 2013, pp 22–26, http://www.health.gov.au/lyme-disease (accessed 19 November 2015).

[4]        Mackenzie, Scoping study, p. 23.

[5]        Department of Health, Lyme Disease Treatment Round Table Meeting, 27 May 2014, http://www.health.gov.au/lyme-disease (accessed 19 November 2015).

[6]        Communicable Diseases Network Australia (CDNA), Submission 531, p. 5.

[7]        Submission 495, p. 4.

[8]        Ms Elaine Kelly, Committee Hansard, Perth, 14 April 2016, p. 10.

[9]        Natalino Hajime Yoshinari et al, 'Brazilian Lyme-like disease or Baggio-Yoshinari Syndrome: exotic and emerging Brazilian tick-borne zoonosis', Revista da Associação Médica Brasileira, vol. 56, no. 3, 2010, http://www.scielo.br/scielo.php?pid=S0104-42302010000300025&script=sci_arttext&tlng=en (accessed 4 January 2015).

[10]      Department of Health, Response to Professor John Mackenzie's Scoping Study, August 2014, p. [7], http://www.health.gov.au/lyme-disease (accessed 19 November 2015).

[11]      See: Lyme Disease Association of Australia (LDAA), Lyme Disease in Australia: Patient submission to the Australian Government Department of Health's 'Scoping Study to develop a research project(s) to investigate the presence or absence of Lyme disease in Australia', January 2014, http://www.lymedisease.org.au/wp-content/uploads/2010/11/20140129LDAAScopingStudyResponse.pdf (accessed 12 April 2016).

[12]      Ms Sharon Whiteman, Committee Hansard, Brisbane, 15 April 2016, p. 3.

[13]      LDAA, Submission 528, p. 8.

[14]      LDAA, Submission 528, pp 81–82. In response to questions on notice, the LDAA provided the committee with a number of published articles suggesting alternative methods of transmission of bacterial infections. See: LDAA, Response to Questions on Notice, received 27 April 2016.

[15]      Ms Vicki White, Committee Hansard, Perth, 14 April 2016, p. 30.

[16]      Dr Hugh Derham, Committee Hansard, Perth, 14 April 2016, p. 43.

[17]      Dr Donna Mak, Committee Hansard, Perth, 14 April 2016, p. 2.

[18]      The Red Cross Blood Service noted that it implements a combination of methods to ensure the safety of the blood supply, including a framework to effectively manage the risk from emerging, re-emerging and emerged infectious diseases; the donor questionnaire screening tool to identify potentially unwell individuals; guidelines for the selection of blood donors to determine the eligibility of individuals to donate blood; and recall of donations from donors who subsequently become unwell. See: Red Cross Blood Service, Submission 992, p. 5. 

[19]      LDAA, Submission 528, p. 7.

[20]      Submission 495, p. 4.

[21]      Ms Elaine Kelly, Committee Hansard, Perth, 14 April 2016, p. 9.

[22]      Professor Anne Kelso, Committee Hansard, Canberra, 20 April 2016, p. 4.

[23]      Professor Anne Kelso, Committee Hansard, Canberra, 20 April 2016, p. 4.

[24]      Professor Anne Kelso, Committee Hansard, Canberra, 20 April 2016, p. 4.

[25]      Professor Anne Kelso, Committee Hansard, Canberra, 20 April 2016, p. 15.

[26]      Dr Gary Lum, Committee Hansard, Canberra, 20 April 2016, p. 2.

[27]      Professor Edward Holmes, Submission 546, pp 1–2.

[28]      Professor Stephen Graves, Committee Hansard, Brisbane, 15 April 2016, p. 47.

[29]      Murdoch University, Submission 497, p. 1.

[30]      Professor Una Ryan, Committee Hansard, Perth, 14 April 2016, p. 58.

[31]      Murdoch University, Submission 497, p. 4.

[32]      Professor Una Ryan, Committee Hansard, Perth, 14 April 2016, p. 55.

[33]      Murdoch University, Submission 497, p. 5.

[34]      Professor Peter Irwin, House of Representatives Standing Committee on Health, Committee Hansard, 18 September 2015, p. 5.

[35]      Professor Una Ryan, Committee Hansard, Perth, 14 April 2016, p. 55.

[36]      Submission 495, p. 4.

[37]      The Karl McManus Foundation was founded in memory of Mr Karl McManus who passed away from complications of tick-borne illnesses in 2010. The aim of the Karl McManus Foundation is to 'raise awareness of tick borne diseases, erode barriers to diagnosis and treatment by encouraging education and funding research in Australia'. See: Karl McManus Foundation, Submission 530, p. 1. The Chief Medical Officer, Professor Chris Baggoley, noted in his 2014 circular on Lyme disease that the department continues to monitor research by Dr Ann Mitrovic at Sydney University. See: Submission 495, Attachment H.

[38]      Karl McManus Foundation, Submission 530, p. 3.

[39]      Dr Mualla McManus, Committee Hansard, Brisbane, 15 April 2016, p. 32.

[40]      US Centers for Disease Control and Prevention (CDC), Lyme Disease, http://www.cdc.gov/lyme/ (accessed 4 January 2015).

[41]      US National Institute of Allergy and Infectious Diseases, Lyme Disease, https://www.niaid.nih.gov/topics/lymedisease/Pages/lymeDisease.aspx (accessed 4 January).

[42]      ESCMID Study Group for Lyme Borreliosis, https://www.escmid.org/research_projects/study_groups/lyme_borreliosis/ (accessed 4 January 2015).

[43]      Parliament of Canada, Bill C-442, An Act respecting a Federal Framework on Lyme Disease, http://www.parl.gc.ca/LegisInfo/BillDetails.aspx?Language=e&Mode=1&billId=6253923 (accessed 16 December 2015).

[44]      Statutes of Canada 2014, Chapter 37, Federal Framework on Lyme Disease Act 2014, http://www.parl.gc.ca/HousePublications/Publication.aspx?Language=E&Mode=1&DocId=6836507&File=4 (accessed 16 December 2015). In 2015, the Public Health Agency of Canada undertook a public consultation process and arranged a conference on the development of the Federal Framework on Lyme Disease. See: Public Health Agency of Canada, Consultation on the Federal Framework on Lyme Disease, http://www.phac-aspc.gc.ca/about_apropos/engagement-participation/lyme-consultation-eng.php (accessed 4 January 2015).

[45]      Nightingale Research Foundation, http://www.nightingale.ca/ (accessed 26 April 2016).

[46]      Mr Stephen Le Page, Committee Hansard, Perth, 14 April 2016, p. 17.

[47]      See: 'Tackling a "ticking" timebomb', NHS Highland, 13 May 2015, http://www.nhshighland.scot.nhs.uk/News/Pages/Tqacklinga'ticking'timbbomb.aspx (accessed 26 April 2016).

[48]      Dr Margaret Hardy, Committee Hansard, Brisbane, 15 April 2016, p. 34.

[49]      Baggio-Yoshinari Syndrome is defined as: 'exotic and emerging Brazilian infectious disease, transmitted by ticks not belonging to the Ixodes ricinus complex, caused by latent spirochetes with atypical morphology, which originates [Lyme disease]-like symptoms, except for occurrence of relapsing episodes and auto-immune disorders'. See: Natalino Hajime Yoshinari et al, 'Brazilian Lyme-like disease or Baggio-Yoshinari Syndrome: exotic and emerging Brazilian tick-borne zoonosis', Revista da Associação Médica Brasileira, vol. 56, no. 3, 2010, http://www.scielo.br/scielo.php?pid=S0104-42302010000300025&script=sci_arttext&tlng=en (accessed 4 January 2015).

[50]      Dr Mualla McManus, Committee Hansard, Brisbane, 15 April 2016, p. 32.

[51]      LDAA, Submission 528, p. 20.

Additional Comments—Senator John Madigan and Senator Zhenya Wang

[1]        Professor Peter Collignon, Committee Hansard, Perth, 14 April 2016, p. 34.

[2]        Dr Richard Schloeffel, Committee Hansard, Brisbane, 15 April 2016, pp 23–24.

[3]        Dr Richard Schloeffel, Committee Hansard, Brisbane, 15 April 2016, p. 24.

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