Making connections, changing lives for people with ME/CFS ... · ME/CFS patients and carers to...
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Making connections, changing lives for people with ME/CFS and associated conditions Page 1 of 6 Emerge Australia 2019-20 Federal Pre-Budget Submission The Hon Josh Frydenberg, MP, Federal Member for Kooyong, Treasurer of Australia, PO Box 6022, House of Representatives, Parliament House, Canberra, ACT 2600 The Hon Greg Hunt, MP, Federal Member for Flinders, Minister for Health, PO Box 6022, House of Representatives, Parliament House, Canberra, ACT 2600 Dear Mr Frydenberg and Mr Hunt, PRE-BUDGET SUBMISSION 2019-20 From Emerge Australia: Mission: To support, provide information and advocacy for people associated with Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS). Vision: Universal awareness and acknowledgement of ME/CFS as a medical condition. Values: To serve the best interests of people affected by ME/CFS with integrity, compassion and empathy. Emerge Australia respectfully requests that the 2019-20 budget includes sufficient spending to enable implementation of all recommendations in the National Health and Medical Research Council (NHMRC) Draft Report on ME/CFS to the NHMRC Chief Executive Officer dated December 2018, copy attached 1,2 . We believe that the NHMRC report into ME/CFS is an excellent piece of work by Government. It is the most up to date and comprehensive report on ME/CFS prepared by a Government and an expert 1 NHMRC Draft Report submitted as supporting doc; p23 has details of recommendations. 2 Please note the report is in draft form pending public consultation.
Transcript of Making connections, changing lives for people with ME/CFS ... · ME/CFS patients and carers to...
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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
