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EmergeAustralia2019-20FederalPre-BudgetSubmissionTheHonJoshFrydenberg,MP,FederalMemberforKooyong,TreasurerofAustralia,POBox6022,HouseofRepresentatives,ParliamentHouse,Canberra,ACT2600

TheHonGregHunt,MP,FederalMemberforFlinders,MinisterforHealth,POBox6022,HouseofRepresentatives,ParliamentHouse,Canberra,ACT2600

DearMrFrydenbergandMrHunt,PRE-BUDGETSUBMISSION2019-20FromEmergeAustralia:

Mission:Tosupport,provideinformationandadvocacyforpeopleassociatedwithMyalgicEncephalomyelitis(ME)/ChronicFatigueSyndrome(CFS).Vision:UniversalawarenessandacknowledgementofME/CFSasamedicalcondition.Values:ToservethebestinterestsofpeopleaffectedbyME/CFSwithintegrity,compassionandempathy.

EmergeAustraliarespectfullyrequeststhatthe2019-20budgetincludessufficientspendingtoenableimplementationofallrecommendationsintheNationalHealthandMedicalResearchCouncil(NHMRC)DraftReportonME/CFStotheNHMRCChiefExecutiveOfficerdatedDecember2018,copyattached1,2.WebelievethattheNHMRCreportintoME/CFSisanexcellentpieceofworkbyGovernment.ItisthemostuptodateandcomprehensivereportonME/CFSpreparedbyaGovernmentandanexpert

1NHMRCDraftReportsubmittedassupportingdoc;p23hasdetailsofrecommendations.2Pleasenotethereportisindraftformpendingpublicconsultation.

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advisorycommitteeinovertwodecades.Webelievethatthisreportisaprudentstartingpointforspendingdecisions.ME/CFSisaseverelydebilitatingandseriousmedicalconditionwhichaffectsalargenumberofAustralians(upto240,000Australiansbasedonaprevalenceestimateof1%3)whodeservefullandfairfundinginthe2019-20budget.WehavesetoutbelowEmergeAustralia’smajorspendingrecommendations,supportinginformation,andaconcludingsummary.Thankyoufortheopportunitytomakethissubmission.MAJORRECOMMENDATIONSFORSPENDINGA. EmergeAustraliasubmitsthatthe2019-20budgetforME/CFSresearchandhealthservices

shouldreflecttheproportionofAustralianswhohavetheillness,andthesignificantlydisablinganddebilitatingimpactithasonthem:

Theannualspendingrecommendationsbelowprovideabenchmarktoassistdecisionmakingontheappropriatescaleandproportionofspendingneededtoaddresstheimpactofthissignificanthealthcondition.AllfiguresarecalculatedinproportiontotheNHMRCpopulationprevalenceestimateof1.0%4ofallAustralianshavingME/CFS.

1. $8.5mofadditionalannualfundingfromNHMRCgrants5.

2. $13mofadditionalfundingfromtheGovernment’s$1.3billionHealthandMedicalIndustry

GrowthPlan,announcedinthe2018–19Budget6

3. $790mofadditionalHealthfundingfromtotalFederalBudget-estimatedannualexpenditureonHealthof$78.8billionfor2018-197.

3Carruthers,B.M.,&vandeSande,M.I.,(Eds).(2012).MyalgicEncephalomyelitis–Adult&Paediatric:InternationalConsensusPrimerforMedicalPractitioners.4Prevalenceof0.2-1.0%fromNHMRCReportp15e.g.ME/CFSaffectsbetween48,000and240,000Australians.Itisnotedthat“theestimatesofAustralianprevalenceandburdenofME/CFSwouldbenefitfrombeingupdated.”5NHMRCAnnualReport2018,p119,totalNHMRCgrantsinthe2017-18yearwere$848m.6BudgetPaperNo.2,2018–19,p116–207Table8,SummaryofExpenses–Statement6,ExpensesandNetCapitalInvestment,Health,BudgetPaperNo12018-19

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4. InadditiontothiswesubmitthatthetotaldiseaseburdenofME/CFSisgreaterthanjustmakinganequivalencefromtheproportionofpeopleafflicted.Upto25%ofpatientswithME/CFSaresoseverelyaffectedtheyarebedboundorhousebound,withmostunlikelyevertoreturntoworkfulltime.Thesepatientsalsohaveanabove-averagevulnerabilitytoself-harm8.RecentresearchindicatesthatpeoplewithME/CFSaremoredisabledthanpeoplewithMultipleSclerosis,theyarerelativelylessabletoworkand,subsequently,havelowerincomelevels9.

B. Thereisalarge“payback”tothebudgetfromincreasedFederalspending

1. Spending$10mintheupcoming2019-20budgetwouldbefullypaidbacktothebudgetifonly1.3%ofthosewithME/CFSmakeasubstantialrecovery.Thisisanexceptionallylowthresholdforfinancialbreak-even10.

2. Spending$10mperannumoffersanexceptionalpotential“payback”tothebudget:if

spending$10mperannumcanhelpjust5%ofthosewithME/CFStorecover,thenthepaybacktothebudgetwouldequal$38.7mperannum,or3.9xbenefitversuscost.

3. Ifspending$10mperannumhelpsjust10%ofthosewithME/CFStorecover,thenthe

paybackwouldbe$77.5mperannumor7.8xbenefitversuscost.

4. TheestimateddirectcostofME/CFStothenationalhealthbudgetis$765mperannum,andtheestimatedtotalcommunitycostofME/CFSis$3.7billionperannum11.

C. EmergeAustraliarespectfullysubmitsthatadditionalor“catchup”spendingisappropriatefor

ME/CFSresearch,health,disabilityandwelfarespending.WebelievethatME/CFShasnothada“fairgo”i.e.hasnotbenefittedfromafairshareofspendingoverrecentdecades.1. TheFederalGovernmenthasspentlessthan$100,000peryearovereachofthelast18

yearsonresearchintoME/CFSviatheNHMRC12.Thisislessthan0.02%oftotalNHMRCgrantspending13,despitethefactthataround1.0%ofAustraliansstrugglewithME/CFS.

8Bedbound/houseboundandunemployednumbersfromNHMRCReportpage15.Self-harmdataseeparaD5herein9Kingdon,C.C.,StructuralStatusandWellbeingofPeopleWithME/CFSComparedWithPeoplewithMultipleSclerosisandHealthyControls,PharmacoeconomicsOpen2–381,201810Only619peopleneedtorecoveroutof48,000,or3,097outof240,000(reflectingtheprevalencerangeof0.2–1.0%).Paybackfiguresareofcourseindicative-onlyandrequireappropriatequalification:theyarebasedon$765mannualcostplustheadditional$10mannualspendingcitedintheexample.11RACPClinicalPracticeGuidelines2002costestimates,updatedusingReserveBankofAustraliainflationcalculator.SeeLoblay,R.etal.,2002,RACPClinicalGuidelines,pS33forcostdata12Ministerialcorrespondence1May2017-letterfromtheHon.GregHunt.

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2. Werespectfullysubmitthatthisis50timeslessthana‘fairgo’,basedonthenumberof

Australianswhohavetheillness,andhowseriousanddebilitatingitis.

3. Wecontendthatthislevelofgeneralunderspendingisalsoreflectedinhealthservices,disabilityandwelfarespending.

4. Wefurthersubmitthatlevelsofexpenditureandpoliciesinhealth,disabilityandwelfaresystemsregardingME/CFSarebasedonoutdatedinformation.ItisextremelydifficultforME/CFSpatientsandcarerstoaccesssupport,andinouropinion,thisperpetuatestheperceptionthatGovernmentandthehealthcaresystemare,atbest,ill-informedandatworstdonotbelievethatME/CFSisarealillnesswithphysiologicalcauses.

5. ThefactthatME/CFSisaphysiologicalorbiologicalillness,andnotapsychiatriccondition,

hasbeenwidelyacceptedinofficialandscientificliterature14.See,forexample,CentersforDiseaseControl(CDC)guidance15updatedin2018,andInstituteofMedicine(IOM)2015reportonME/CFS16.

6. AconsequenceofthesignificantunderfundingforME/CFShasbeentheimpactonofficial

Australianclinicalpracticeguidelines.Theseguidelines,onhowtodiagnoseandtreatME/CFS,werepublishedin2002(17yearsago)17.Weareconfidentthatifappropriatefundingwereforthcomingthissituationwouldbespeedilyrectifiedwithdirect,andimmediatebenefitstopatientwelfare.

7. ThelackofinvestmentbyGovernmentinuptodateguidanceforcliniciansisseriouslydisproportionatetothenumberofAustralianswhohavetheillness,andthedebilitatingimpactthatithas.

8. Recentinternationalresearch,basedonaninternationalandAustraliansamplepopulation,

reportsahighlevelofstigmaexperienced,andconsequentnegativehealthimpacts,inpeoplewithME/CFS18.EmergeAustraliarespectfullysubmitsthatthestigmaexperiencedbypatientswithME/CFScanbesignificantlyreducedbyGovernmentiftheupcomingbudgetaddressespriorunderspendingonthecondition.

13NHMRCGrantsFunding2000-2016Summary.14SeeUSADHHSIOMReport,BeyondEncephalomyelitis/ChronicFatigueSyndrome,RedefiningAnIllness,2015.AusefulsummaryisinMaxmen,A,BiologicalUnderpinningstoChronicFatigueSyndrome,newsarticleinNature,30March2017,p60215https://www.cdc.gov/me-cfs/index.html16http://www.nationalacademies.org/hmd/Reports/2015/ME-CFS.aspx17RACPClinicalPracticeGuideline:ChronicFatigueSyndrome,MedJournalofAust,2002;176(9):17–5518Terman,J.M.etal.,ConfirmatoryFactorAnalysisofaMyalgicEncephalomyelitisandChronicFatigueSyndromeStigmaScale,JournalofHealthPsychology,1–10,2018,pages3,4,7and8.

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9. TheNHMRCDraftReportonME/CFSoffersGovernmentaprudentbasisonwhichtomakeasignificant2019-2020budgetallocation,bothto“catchup”onpriorlowlevelsofspendingandtomakeasignificantimprovementinthelivesofsome240,000Australians,andtheircarers.

SUPPORTINGINFORMATIOND. LargenumbersofAustraliansareseriouslyharmedbyME/CFS:

1. Upto240,000(1.0%)ofAustralianshaveME/CFS,accordingtotheestimatesintheNHMRCDraftReport[forfootnoteNHMRCDraftReportpage15].

2. Upto60,000arebedboundorhousebound[NHMRCDraftReportpage15]andlargely

dependentoncarers.Manyofthesepatientsareisolatedandsubsequentlyvulnerabletoarangeofserioushealthproblemsassociatedwithlonelinessandisolation,includingcardiacdiseaseandself-harm.

3. Upto148,000areunemployed[NHMRCDraftReportpage15].

4. Upto180,000womenhaveME/CFSinAustralia,makingME/CFSaseriouswomen’shealth

concern.[FootnoteUSADHHSIOMReport,BeyondEncephalomyelitis/ChronicFatigueSyndrome,RedefiningAnIllness,2015,page2]

5. PreliminaryresearchfromtheUSAandUKreportthatME/CFSpatientsareatseriousriskof

self-harmandsuicide.Potentialforsuicidewasindicatedata‘sevenfold’increaseinaUKstudy19andat17-18timesincreaseascomparedtonationalaverages,inaUSAstudy20,21.

6. ResolutiononME–questionputandagreedtobyUKparliamenton24/1/19

Resolved,ThatthisHousecallsontheGovernmenttoprovideincreasedfundingforbiomedicalresearchforthediagnosisandtreatmentofME;supportsthesuspensionofGradedExerciseTherapyandCognitiveBehaviourTherapyasmeansoftreatment;supportsupdatedtrainingofGPsandmedicalprofessionalstoensurethattheyareequippedwithclearguidanceonthediagnosisofMEandappropriatemanagementadvicetoreflectinternationalconsensuson

19Kaupur,N.etal.,inTheLancet2016p159620p4-6Dimmock,E.M.etal.,EstimatingtheDiseaseBurdenofME/MECFSintheUnitedStatesanditsrelationtoresearchfunding,JournalofMedicineandTherapeutics,DePaulUniversityChicago,USA,Vol1pp1–7,201621NBtheauthorsnotethatresultswere’roughestimates’and‘firstapproximations’withlowsamplesize.

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bestpractice;andisconcernedaboutthecurrenttrendsofsubjectingMEfamiliestounjustifiedchildprotectionprocedures.22

E. SUMMARYRECOMMENDATIONSEmergeAustraliarequeststhatthe2019-20budgetincludesspendingtoenableimplementationofallrecommendationsintheNationalHealthandMedicalResearchCouncil(NHMRC)DraftReportonME/CFStoTheNHMRCChiefExecutiveOfficerdatedDecember2018,copyattached.[footnoteNHMRCReportpage23hasdetailsofrecommendations.]EmergeAustraliarespectfullysubmitsthattherequestedspendingisfair,urgent,andcriticallyneeded.AlargenumberofAustraliansurgentlyrequirehelp.Yourssincerely,DrHeidiNichollChiefExecutiveOfficer-EmergeAustraliaInc.ceo@emerge.org.auhttps://emerge.org.au/

22https://hansard.parliament.uk/Commons/2019-01-24/debates/FA1BBC27-37A7-4BFD-A2C0-A58B57F41D4D/AppropriateMETreatment?highlight=health%20debate%202018#contribution-758188D8-B537-433F-BE8B-ED2D33ABC4F3