2
www.lymedisease.org.au/our-work/chronology CHRONOLOGY Date Event 2009 Lyme Disease Association of Australia (LDAA) formed by sick Australians 2012 LDAA Australia Patient Experience Survey and Report 2013 /01 Department of Health - Scoping Study - LDAA submission 2013 LDAA successfully requested to be patient representative on Clinical Advisory Committee into Lyme disease (CACLD) convened by then Chief Medical Officer (CMO) Prof Chris Baggoley 2013 /05 LDAA joins Worldwide Lyme Awareness protests LDAA commences tracking patients and tick bites – statistical plots 2014 /04 Royal College of Pathologists Australasia issue Position Statement on Lyme disease LDAA Response 2014 /07 The CACLD met 5 times and then ceased with Prof Baggoley citing (to LDAA) lack of cooperation/discussion amongst medical members. 2015 /05 LDAA ran a successful call to action campaign with over 20,000 postcards mailed to politicians nationally during our May awareness period. 2015 /05 LDAA Response to Dept of Health Statement 2015 /09 LDAA submits to Chronic Disease Inquiry 2015 /09 Stephen Jones MP successfully lobbied for a Lyme disease roundtable meeting as part of a Chronic Disease Inquiry. The meeting occurred on Sept 18 th artefacts include Hansard and Recommendations 2015 /09 Ken Wyatt MP Lyme disease roundtable Hansard: I want you to cast your minds back to when we had HIV-AIDS. That was known for some time, but we did not test for it until it became an epidemic in the sense of the way Australia had to react to it. Our laboratories were not ready at the time, and the policy thinkers within health jurisdictions, including the Commonwealth department of health, had not turned their minds to much more investigative work until the information was provided from a number of sources. Then we went into a strong overdrive in treating people with HIV-AIDS, and we looked for cures. Barry Marshall, with ulcers, had a theory that he put forward and was, in a sense, howled down by colleagues in his profession. He went on to become a Nobel prize winner for the work that he did. I just find it negligent—extremely negligent—that we have so many Australians suffering from what appears to be either Lyme or some form of Lyme disease, and yet we are having debates around who is right and who is wrong and whether the testing is right or wrong. Why aren't we being proactive? I am going to ask the Department of Health. What is your role and objective in the management of the health of Australians, Dr Lum?” 2015 /11 Senator Madigan travelled Australia to hear from patients, doctors and pathologists (Melbourne, Ballarat, Sydney and Sunshine Coast) 2015 /11 Senator Madigan received full cross-bench support for a Senate Inquiry into Lyme-like Illness 2016 /03 Senator John Madigan addresses parliament 2016 /03 Friends of Lyme meeting at Parliament House, Canberra - hosted by Senator Madigan Dr Schloeffel of ACIIDS speaks 2016 /04 LDAA Submission to the Senate Inquiry (confidential - non-redacted version) 2016 /05 Senate Inquiry lapsed with dissolution of 44 th Parliament 2016 /05 CWA of NSW commits 3 years of medical research funding to the LDAA to advance Lyme disease research 2016 /09 LDAA Submission to the National Health and Medical Research Council seeking a Targeted Call for Research into Lyme disease 2016 /09 Senate Inquiry re-adopted in 45 th Parliament 2016 /10 SBS Insight airs Tick Sick segment on Lyme disease 2016 /11 LDAA Supplementary submission (confidential - non-redacted version) 2016 /11 Senators Siewert, Moore and Lambie address parliament on Senate Inquiry Final Report recommendations, supporting a Patients First approach 2017 /04 Department of Health announces funding of $3 million for a Targeted Call for research on Lyme disease 2017 /09 LDAA provides funding to Murdoch University to commence pilot study of patients 2017 /11 Senators Siewert and Reynolds speak on government response to Senate Inquiry Final Report - Patients First. 2017 /11 Department of Health publishes National Serology reference Laboratory’s report on Performance of Testing

CHRONOLOGY - Lyme Disease · 2018 /11 In partnership with Spectrumceuticals, Dr Schloeffel, Dr Gupta and Dr Read of ACIIDS delivered tick-borne diseases training to 50 medical doctors

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Page 1: CHRONOLOGY - Lyme Disease · 2018 /11 In partnership with Spectrumceuticals, Dr Schloeffel, Dr Gupta and Dr Read of ACIIDS delivered tick-borne diseases training to 50 medical doctors

www.lymedisease.org.au/our-work/chronology

CHRONOLOGY Date Event2009 LymeDiseaseAssociationofAustralia(LDAA)formedbysickAustralians2012 LDAAAustraliaPatientExperienceSurveyandReport2013/01 DepartmentofHealth-ScopingStudy-LDAAsubmission2013 LDAAsuccessfullyrequestedtobepatientrepresentativeonClinicalAdvisoryCommitteeintoLymedisease

(CACLD)convenedbythenChiefMedicalOfficer(CMO)ProfChrisBaggoley2013/05 LDAAjoinsWorldwideLymeAwarenessprotests LDAAcommencestrackingpatientsandtickbites–statisticalplots2014/04 RoyalCollegeofPathologistsAustralasiaissuePositionStatementonLymediseaseLDAAResponse2014/07 TheCACLDmet5timesandthenceasedwithProfBaggoleyciting(toLDAA)lackofcooperation/discussion

amongstmedicalmembers.2015/05 LDAAranasuccessfulcalltoactioncampaignwithover20,000postcardsmailedtopoliticiansnationally

duringourMayawarenessperiod.2015/05 LDAAResponsetoDeptofHealthStatement2015/09 LDAAsubmitstoChronicDiseaseInquiry2015/09 StephenJonesMPsuccessfullylobbiedforaLymediseaseroundtablemeetingaspartofaChronicDisease

Inquiry.ThemeetingoccurredonSept18thartefactsincludeHansardandRecommendations2015/09 KenWyattMPLymediseaseroundtableHansard:

“IwantyoutocastyourmindsbacktowhenwehadHIV-AIDS.Thatwasknownforsometime,butwedidnottestforituntilitbecameanepidemicinthesenseofthewayAustraliahadtoreacttoit.Ourlaboratorieswerenotreadyatthetime,andthepolicythinkerswithinhealthjurisdictions,includingtheCommonwealthdepartmentofhealth,hadnotturnedtheirmindstomuchmoreinvestigativeworkuntiltheinformationwasprovidedfromanumberofsources.ThenwewentintoastrongoverdriveintreatingpeoplewithHIV-AIDS,andwelookedforcures.BarryMarshall,withulcers,hadatheorythatheputforwardandwas,inasense,howleddownbycolleaguesinhisprofession.HewentontobecomeaNobelprizewinnerfortheworkthathedid.Ijustfinditnegligent—extremelynegligent—thatwehavesomanyAustralianssufferingfromwhatappearstobeeitherLymeorsomeformofLymedisease,andyetwearehavingdebatesaroundwhoisrightandwhoiswrongandwhetherthetestingisrightorwrong.Whyaren'twebeingproactive?IamgoingtoasktheDepartmentofHealth.WhatisyourroleandobjectiveinthemanagementofthehealthofAustralians,DrLum?”

2015/11 SenatorMadigantravelledAustraliatohearfrompatients,doctorsandpathologists(Melbourne,Ballarat,SydneyandSunshineCoast)

2015/11 SenatorMadiganreceivedfullcross-benchsupportforaSenateInquiryintoLyme-likeIllness2016/03 SenatorJohnMadiganaddressesparliament2016/03 FriendsofLymemeetingatParliamentHouse,Canberra-hostedbySenatorMadiganDrSchloeffelofACIIDS

speaks2016/04 LDAASubmissiontotheSenateInquiry(confidential-non-redactedversion)2016/05 SenateInquirylapsedwithdissolutionof44thParliament2016/05 CWAofNSWcommits3yearsofmedicalresearchfundingtotheLDAAtoadvanceLymediseaseresearch2016/09 LDAASubmissiontotheNationalHealthandMedicalResearchCouncilseekingaTargetedCallforResearch

intoLymedisease2016/09 SenateInquiryre-adoptedin45thParliament2016/10 SBSInsightairsTickSicksegmentonLymedisease2016/11 LDAASupplementarysubmission(confidential-non-redactedversion)2016/11 SenatorsSiewert,MooreandLambieaddressparliamentonSenateInquiryFinalReportrecommendations,

supportingaPatientsFirstapproach2017/04 DepartmentofHealthannouncesfundingof$3millionforaTargetedCallforresearchonLymedisease2017/09 LDAAprovidesfundingtoMurdochUniversitytocommencepilotstudyofpatients2017/11 SenatorsSiewertandReynoldsspeakongovernmentresponsetoSenateInquiryFinalReport-PatientsFirst.2017/11 DepartmentofHealthpublishesNationalSerologyreferenceLaboratory’sreportonPerformanceofTesting

Page 2: CHRONOLOGY - Lyme Disease · 2018 /11 In partnership with Spectrumceuticals, Dr Schloeffel, Dr Gupta and Dr Read of ACIIDS delivered tick-borne diseases training to 50 medical doctors

www.lymedisease.org.au/our-work/chronology

assaysforLymediseaseinAustralia2017/11 LDAAResponsetoGovernmentResponse2017/12 LDAASubmittedQuestionstoDepartmentofHealthonNationalSerologyRefenceLaboratoryreportingin

TestingassaysDate Event2018/04 LDAAannouncesScientificAdvisoryCommittee-Internationalbiomedicalscienceandclinicalmedicine

expertshavejoinedlocalexperts2018/04 DepartmentofHealthannouncesnamechangefromLyme-likeillnesstoDebilitatingSymptomComplexes

AttributedtoTicks(DSCATT)2018/04 ProfMurphy,CMOconvenesDSCATTForumwithstateandterritoryHealthOfficials,HeadsofMedical

Colleges,twopatientgroupsandLymetreatingdoctor,DrRichardSchloeffel;outcomeswereformallyreported

2018/07 ProfBMurphy,CMOconvenesDSCATTForumwithpatientgroupsinSydneyandpromisedsecondmoreindepthandfacilitatedforum

2018/08 LDAApresentsatnationalCountryWomenofAustralia(CWAoA)conferenceinCanberra2018/08 NationalPartylobbiedforactionforAustralianLyme-likediseasebyMotioning:

ThatthisNationalsFederalCouncilrequesttheAustralianGovernmentto:1.RecognisethataLyme-likediseaseexistsinAustraliaandisplacedonthe‘notifiabledisease’register.2.InsistthatdoctorswhoaretreatingLyme-likediseaseinAustraliaareprotectedfrominvestigationandreprisals,inparticularbutnotlimitedto,MedicalBoardsinAustralia.3.InsistthatgeneralpracticeandinfectiousdiseasespecialistdoctorsareprovidedbestpracticeeducationonLyme-likediagnosisandtreatment.4.Ensurepatientsareofferedaffordabletesting,treatment,andfullaccesstoacuteandchronicdiseasesupport.5.Committoresearch,onparwithotherinfectiousdiseases,suchasZika,SARS,Ebolaetc.6.ThatthismatterbetreatedwithurgencyandisinitiatedpriortotheupcomingFederalElection.

2018/11 InpartnershipwithSpectrumceuticals,DrSchloeffel,DrGuptaandDrReadofACIIDSdeliveredtick-bornediseasestrainingto50medicaldoctors(RACGPcreditsapproved)

2018/11 DSCATTteleconferencewithDeptofHealth(OHP),DrHorowitzandDrSchwarzbach(internationaladvisors)andLDAA

2018/11 MedicallyAbandonedAbstractacceptedbyNationalRuralHealthAlliance2018/11 DepartmentofHealthApproachedtheMarket(ATMID:Health/18-19/04745seekingasuitablesupplierto

developanevidence-basedclinicalpathway,includingamultidisciplinarycareapproachthatcanbeflexiblyappliedinbothprivateandpublichealthcaresettings.

2019/01 NationalHealthandMedicalResearchCouncilTargetedResearchCallannouncesthey’veallocated$3mDSCATTfundingto2projectsexpectedtoreportin2023

2019/01 LDAArespondstoNHMRCfundingallocation2019/02 LDAAblogpostbyDrShahofIGeneXlab(US)quotes46%of100AustraliansamplestestpositiveforBorrelia

burgdoferiorRelapsingFeverBorrelia.Republishedbylymedisease.org(premierUSLymecharity)2019/02 LDAAsubmitsPre-BudgetSubmissionfor2019-20budgetconsideration2019/02 DepartmentofHealthApproachedtheMarketseekingasuitablesupplierto“increasetheknowledgeof

medicalprofessionalsandthepublicontick-borneillnessesthatareacquiredinAustraliaandoverseas,aswellprovideinformationontickbitepreventionandsafetickremovalmethods.”

2019/03 LDAAblogpost,'DeathbyPsychiatry'outliningthetragicdeathofretiredCSIROscientist,DrJohnCurnow'swifeBarbara

2019/03 UnnecessarydeathofLymepatient,RéneMichaelis,theirstory'WhenALSisactuallyLyme'2019/03 NationalRuralHealthAlliancepublish'MedicallyAbandoned'onPartyline2019/03 LDAArepresentativestopresent'MedicallyAbandoned'atNRHAconference

http://www.lymedisease.org.au/our-work/chronology