john forman – icord president suppor9ng countries emerging...
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JohnForman–ICORDPresidentSuppor9ngcountriesemergingtorarediseases
RareDiseasesInterna9onal–Edinburgh25May2016
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Aboutme WithJudith,TimothyandHollieTwins,age41 Alpha-Mannosidosis,arareLysosomalstoragediseasewithprogressiveandsevereimpacts InvolvedinmanyrarediseasegroupsinNZandworld-wide CurrentPresidentofICORD
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A41yearjourneythatneverends ATer50daysinhospitaland42daysonIVan9bio9cs Anaddi9onalrarediseaseforHollie XGPkidneydisease NoOrphanetorGARDentry,buttreatable!!
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IntroducingICORDØ Societysetupin2007(firstICORDconference2005inStockholm)Ø Amul9-stakeholdersocietyfocusedonrarediseasesandorphandrugsØ Membersincludehealthofficials,regulators,researchers,clinicians,industry,academics,pa9ents,advocacygroupleadersØ Hasheld10interna9onalconferencesØ Sweden,Spain,Belgium,USA,Italy,Argen9na,Japan,Russia,theNetherlandsandMexicoØ 2016–CapeTown,SouthAfrica.Ø 2017–China?2018–India?
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ICORD’spolicystatement
Ø TheYukiwarisoDeclara9on
Ø PublishedinActaPaediatricaVol101,Issue8,pp805-807,August2012(summaryversion)-Alsoatwww.icord.se(fullversion)
Ø Thedeclara9onprovidesara9onaleandframeworkforlegisla9on,policies,ac9onplans
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TheDeclara9on’s6principles
Ø 1.RDsareasignificantpublichealthissue–6to8%Ø 2.Humanrightsandgovernmentdu9esareinvolvedØ 3.RDresearchandproductdevelopmentshouldbesupportedØ 4.AcomprehensiveapproachtorarediseasesshouldbeadoptedØ 5.Theimportanceofpa9entautonomy,consentandinforma9onneedsØ 6.Includepa9entgroupsinpolicyandservices
Thereare12guidancepointstoassistimplementa9onoftheseprinciples
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ThedevelopingworldØ OurDeclara9on’sadviceonimplementa9onofrarediseasepoliciesincludesreferencetothedevelopingworld
Ø But“light”onanalysisofthatpoint
Ø Howtoeffec9velypromoteRDpolicyandac9onplansindevelopingworld?
Ø AmajorchallengeforICORD,RDI,WHOandUNagencies
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RarediseasesinthedevelopingworldØ Easiertoarguewhenprimarycareandpublichealtharewellestablished
Ø Easierforpoli9ciansandofficialswhenresourcesareplen9ful
Ø Manycountriesrelyonlineardevelopment,i.e.whenthebasicsareinplace
Ø Buttherighttohealthappliestoall,includingthosewithrarediseases
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RightsandequityØ Progressiverealisa9onoftherighttohealthmeansworkingfromwhereyouareandprovidingforallsec9onsofthecommunityØ Rarediseasepa9entsindevelopingworldsufferdoubleortripledisadvantagesofpoverty,limitedbasichealthcare,andlackofprovisionfortheirrarediseaseØ Withoutaccesstobasichealthcare,rarediseasepa9entshavehighermortality,greatermorbidityandcompoundedsocialdisadvantageØ Establishingthebasicsimprovesoutcomesforall,includingthosewithrarediseasesØ Thebasicsareanecessaryplamormfordiagnosis,care,preven9onandtreatmentofrarediseases
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Modelstoconsider
Ø WHO/WAOPBD,1999.ServicesforthePreven9onandManagementofGene9cDisordersandBirthDefectsinDevelopingCountriesØ Aformulaforparalleldevelopmentofspecialistservices
Ø Offersgoodinsightintowhatcanbedone
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Modelstoconsider
Ø Mexico’seffortsfrom2004throughSeguroPopular,agovernment-fundedprogram.Ø 52.6millionpreviouslyuninsuredMexicansenrolledinhealthcareinlessthanadecade.
Ø Achieveduniversalhealthcareby2012.Ø WorldBank2013–“NinecountriesfromacrossLa9nAmericaandCaribbeanhighlightedfortheirhealthcaresuccesses.”
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ModelstoconsiderØ Philippines-KalusuganPangkalahatan,UniversalHealthcareØ Since2012,boostedhealthcareexpenditurebycloseto100%throughaSinTaxontobaccoandalcoholØ Healthcarecoverageextendedto82%ofthepopula9on-anaddi9onal45millionpeople
Ø 1,000moredoctors,10,000morenurses,6,000moremidwivesØ Asolidfounda9on-necessaryforthesurvivalandiden9fica9onofrarediseasepa9ents
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Combinethemodels
Ø Buildthebasisanddevelopthespecialistservicesatthesame9me
Ø AvoidtheunfairnessofalinearapproachØ Comprehensiveprimaryandpublichealthservicesneedspecial9eslikepathology,clinicalgene9csandlaboratoriestosupportthem
Ø Thesespecialistservicesalsoprovideessen9albasicstoiden9fyandcareforrarediseases
Ø Recognisethedifferentstagesofdevelopmentthatmeandifferentapproachesareneedinthedevelopingworld
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“Topdownandboqomup”
Ø UN,WHO,WorldBanksupporttoinfluencegovernments
Ø Partnershipswithresearchandmedicalallies
Ø Buildgrassrootspa9entadvocacy
Ø Workonall3levelsinparallel.Oneortwoonlywillbeverydifficult
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AnidealopportunityØ Rarediseaseday2013“Rarediseasesmustbecomeapublichealthpriorityaroundtheworld.Improvedaccesstodiagnosis,accurateinforma9on….accesstohealthcareandsocialservices,andafocusonresearchthatwillleadtotreatmentsorevenacureforpeoplelivingwithararedisorder.”HelenClark,FormerPrimeMinisterofNZ,UNDPAdministratorandCandidateforUNSecretary-General
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Bewarethepimalls
Ø Templatemodelswillnotwork.Ø Challengesofcross-borderhealthcareØ Absenceofgene9cservicesØ CriteriaforOrphanetØ Languageandpoli9cal/culturalbarriersØ Verylimitedpa9entadvocacynetworks
Ø Allofthesemeanwecannotjust“transplant”modelsofrarediseasepoliciesandservicesfromotheradvancedhealthcaresystems
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Thetakehomemessage
Ø Promoteparalleldevelopmenttoensurefairandequitableprovisionforallsec9onsofthecommunityØ Encouragegovernments,healthplannersandhealthagencies,whilealsobuildingpa9entadvocacyandallianceswithotherrarediseasealliesØ AdaptpoliciestostagesofdevelopmentØ Avoidrelianceontemplatesolu9ons
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Thankyou
Ø Tomyfamilyforsuppor9ngmeinrarediseaseadvocacyØ Tomymotherforins9llingmyvaluesaboutcaringforthedisadvantagedØ Toallofyou,whoseworkandinterestshelpsimprovethelivesofthosewithrarediseases