Report Launch HouseofRepresenta.vesAlcove,ParliamentHouse

16thMarch2016

Report Overview

•  JustaLi)leMoreTimesserieswasdevelopedtomonitorandevaluatethestatusofrareandlesscommoncancersinAustraliaandtoraiseawarenessofthechallengesthisgroupofpa.entsfaceday-to-day•  Sincethefirstreportwaslaunchedwehaveseenanincreasingawarenessamongstallstakeholders,andyetthedaytodaylivesoftheseAustralianpa.entshasnotyetimprovedmeasurably

Common vs Rare Incidence and Mortality

The Impact of Rare Cancers

Burden of Disease

• Cancerisusuallyconsideredadiseaseofolderpeople,withmortalityratesincreasingwithageformostcancers•  In2015theriskofbeingdiagnosedwithcancerbytheageof85was1in2formen,and1in3forwomen• BUTourresearchhasshownthatrareandlesscommoncancersdonotrestrictthemselvestotheagedandinfirm,infacttheydispropor.onatelyaffectourchildrenandyoungfamilies

Age Specific Impact of RLC Cancers

Childhood cancers

• RLCcancersmostcommoncauseofdeathinchildrenunder15•  95%ofallcancerdeathsinchildrenarecausedbyRLCcancers• Majorissuesforchildhoodcancerpa.entsisthelackofresearch,includingclinicaltrials,andavailabilityoftreatments

Gen Y Cancers

• RLCcancers4thmostcommoncauseofdeathin20-39yearolds,andthemostcommoncauseofdiseaserelateddeath• RLCcancersaccountfor61%ofallcancerdeathsinthisagegroup

Gen X Cancers

• RLCcancersmostcommoncauseofdeathin40-59yearolds,withmorethan3000deathsperyear• RLCcancersaccountfor52%ofallcancerdeathsinthisagegroup

Baby Boomers • RLCcancersmostcommoncauseofdeathin60-69yearolds,causingmorethan4,600deathsperyear• RLCcancersaccountfor51%ofallcancerdeathsinthisagegroup• Asthepopula.onagesthenumbersinthisgrouparesettoincreasemostsignificantly

Research Funding

• Ofthe$350mspentannuallyoncancerresearchinAustralia,only2%isaimedatraresolidtumours•  Theimpactofthisneglectissignificant•  Theestablishmentofproperlyfundedcentresforrarecancerresearchisnowanurgentpriority

Treatment Availability

• Pa.entswithrarecancersaredisadvantagedbecausetheyhavelimitedaccesstonew,effec.vetreatments• Oncologyincreasinglyunderstoodatthemolecularlevel&focusshiWingawayfromnon-targetedcytotoxicagentstowardsnewer,targetedtherapieswhichactonspecificcancercellgrowthcontrolandsurvivalmechanisms• Benefitsarenotyetflowingtorarecancerpa.ents

PBAC Treatment Approvals since 2010

Call to AcLon

Conclusion • Rarecancersrepresentamajordiagnos.caswellastherapeu.cchallengeandareamajorsourceofdiscrimina.onamongpa.ents.

• Weneedtotakeac.ontogivetheseAustralianpa.entstheresources,support,treatmenttheyneedandmostimportantlyprovidethemallwithjustali\lemore.me.

Thank You