CHRONOLOGY - Lyme Disease · 2018 /11 In partnership with Spectrumceuticals, Dr Schloeffel, Dr...

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

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