MakingtheCASEforVaccines: Anewmodelfortalkingtoparentsaboutvaccines Itcanbefrustratingtostillbetalkingaboutautismandvaccineswhenasmedicalandpublichealth professionalsweknowallthesepointsaretrue… 1. Therearedozensofstudieslookingattherelationshipbetweenautism andvaccines,andnoneindicatealink.Youcanreadthestudiesfor yourselfhere: http://www.autismsciencefoundation.org/autismandvaccines.html 2. Thearticlethatoriginallypositedarelationshipbetweenautismand theMMRvaccine,conductedbyAndrewWakefield,wasretractedin early20101.AndrewWakefieldwasstrippedofhismedicallicense2and hisreportwasdeemed“anelaboratefraud.”3 • TheVaccineCourthasdeniedallclaimsintheAutismOmnibus Hearings4,writing,“thiscaseisnotaclosecase.Theoverall weightoftheevidenceisoverwhelminglycontrarytothe petitioners’causationtheories.” 3. Moreandmorechildrenaregettingsickfromvaccinepreventable diseaseslikemeasles5andpertussis.6 Evenwithallthesefacts,someparentsmaystillquestionthesafetyandefficacyofvaccines.Physicians areseeingtheeffects,accordingtoaJournalofPreventativeMedicinestudypublishedinMay20117: • Nearly8outof10physiciansreportatleastonevaccinerefusalfromaparent. 1 ABCNews.“LancetRetractsControversialAutismPaper.”http://abcnews.go.com/Health/AutismNews/autismvaccines-lancet-retracts-controversial-autism-paper/story?id=9730805 2 TheNewYorkTimes.“BritishMedicalCouncilBarsDoctorWhoLinkedVaccinewithAutism.” http://www.nytimes.com/2010/05/25/health/policy/25autism.html 3 CNN.“Retractedautismstudyan'elaboratefraud,'Britishjournalfinds.” http://www.cnn.com/2011/HEALTH/01/05/autism.vaccines/index.html 4 “AbouttheOmnibusAutismProceeding.”http://www.hrsa.gov/vaccinecompensation/omnibusproceeding.htm 5 CDC.“Measles---UnitedStates,January--May23,2014.” https://www.cdc.gov/mmwr/preview/mmwrhtml/mm6322a4.htm 6 CDC.“PertussisEpidemic–WashingtonOutbreaks2012.” https://www.cdc.gov/mmwr/preview/mmwrhtml/mm6128a1.htm 7 “Prevalenceofparentalconcernsaboutchildhoodvaccines:theexperienceofprimarycarephysicians.” http://www.ncbi.nlm.nih.gov/pubmed/21496754 AutismScienceFoundation.org ©2017AutismScienceFoundation,Inc.AllRightsReserved. 1 • 8%reportrefusalsformorethan10%ofchildrenintheir practice. Parentsarealsostillunsureoftheconnectionbetweenautismand vaccines.AccordingtoaHarrisInteractive/HealthDaypollpublishedin January20118: • 18%ofAmericanssayvaccinescauseautism. • 30%ofAmericansaren’tsure. Familieswithonechildwithautismarealsolesslikelytovaccinateyounger siblings,basedalmostentirelyontheirbeliefoftheautism–vaccineconnection9.However,astudy disprovedthisfear,showingthatautismdiagnosisdidnotchangebyputtingchildrenonanalternate MMRschedule.10Otherfactorswhichmayinfluencethedecisiontovaccinatearemandatesand allowableexemptions.Whileoverallup-to-datevaccineratesarearound95%,almosthalfofUSstates dippedbelowthat,endangeringthosewhocannotreceivevaccinesduetoageorpreexistingmedical issueslikeleukemia.11 Thescienceonautismandvaccinesisclear,butstillsomeparentsarenotgettingthemessage.Better communicationwithparentsaboutvaccinesisnecessary.Ourtraditionalframeworksfor communicatingsciencearenolongeradequate.Weneedanewwayoftalkingtoparents. New4-StepFrameworkforCommunicatingVaccineScience:TheCASEModel Itisimportanttolistencarefullytotheconcernsparentsraiseregardingvaccinesandautism.Theymay haveheardscarythingsonTVorfromfriends,andtheirfearsareveryreal.It’sourjobasmedicaland publichealthprofessionalstoexplainthescienceinanewway.TheCASEMethodcombinesemotional 8 “Vaccine-AutismLink:SoundScienceorFraud?” http://www.harrisinteractive.com/newsroom/pressreleases/tabid/446/mid/1506/articleid/674/ctl/readcustom%2 0default/default.aspx 9 “Surveyofvaccinebeliefsandpracticesamongfamiliesaffectedbyautismspectrumdisorders.” https://www.ncbi.nlm.nih.gov/pubmed/22387922 10 AutismOccurrencebyMMRVaccineStatusAmongUSChildrenWithOlderSiblingsWithandWithoutAutism. http://jamanetwork.com/journals/jama/fullarticle/2275444 11 VaccinationCoverageAmongChildreninKindergarten—UnitedStates,2013–14SchoolYear. https://www.cdc.gov/mmwr/preview/mmwrhtml/mm6341a1.htm AutismScienceFoundation.org ©2017AutismScienceFoundation,Inc.AllRightsReserved. 2 andscientifictalkingpointstoswayparent’semotionalresponseandhelpthemfacetheissuemore logically. Keepinmindthatparentswillevaluatethemessageandthemessenger.Itisimportanttomaintaina professionalandcompassionatetonewhendiscussingvaccineswithaparent.Theyarescaredand lookingformoreinformation. Nexttimeyouhaveaconcernedparent,trytheCASEMethod: • Corroborate:Acknowledgetheparents’concernandfindsome pointsonwhichyoucanagree.Setthetoneforarespectful, successfultalk. • AboutMe:Describewhatyouhavedonetobuildyourknowledge baseandexpertiseonthisissue. • • Science:Describewhatthesciencesays. Explain/Advise:Giveyouradvicetopatient,basedonthescience. ExamplesofhowtousetheCASEMethodwithcommonvaccine concerns: “IheardonTVthatvaccinescauseautism” • Corroborate:There’scertainlybeenalotofcoverageontelevisionaboutvaccinesandautismso Icanunderstandwhyyouhavequestions. • AboutMe:IalwayswanttomakesureI’muptodateonthelatestinformationsothatIcando what’sbestformypatients,soI’veresearchedthisthoroughly.Infact,Ijustreturnedfroma professionalconferencewherewereviewedthedataatlength. • Science:Thescientificevidencedoesnotsupportacausallink.TheCDC,the AAP,theNIH,theIOM(etc.)allreviewedthedataandallreachedthesame conclusion.Dozensofstudieshavebeendone.Here’swhatwedoknowabout whatcausesautism…. • Explain/Advise:Vaccinesarecriticaltomaintaininghealthandwellbeing.They preventdiseasesthatcauserealharm.Choosingnottovaccinatedoesnot protectchildrenforautism,butdoesleavethemopentodiseases.Kidsneed thesevaccines. AutismScienceFoundation.org ©2017AutismScienceFoundation,Inc.AllRightsReserved. 3 “Measlesisn’tsobad.IhadchickenpoxandIwasfine.” • Corroborate:Icanunderstandwhyyoumightfeelthatway.Ihadchickenpoxmyself. • AboutMe:Untillastyear,IhadneverseenacaseofHIBormeasles,butnow,asvaccinerates decline,thesediseasesaremakingacomeback.MycolleagueinSanDiegowastellingmeabout what’sgoingoninCAregardingthewhoopingcoughepidemic. • Science:Thesediseaseshavecomebackinareaswherevaccinationratesarelow.Lastyear,six childrendiedofHIBandthisyearinCalifornianinebabieshavediedofpertussis. • Explain:Wecareaboutourpatientsanddon’twanttopracticesubstandardcare.Allour patientsneedtobevaccinated.Myownchildrenarefullyvaccinated. “Iwanttospreadouttheshotssotheywon’toverwhelmmychild’simmunesystem.” • Corroborate:Kidstodaycertainlygetmoreshotsthankidsdidyearsago. • AboutMe:OurpracticefollowstheCDCschedulebecauseitiscarefully designedtoprotectchildrenatthetimetheyaremostvulnerabletodisease.I participateonacommitteethatreviewstheschedule(describeyourinvolvement). • Science:Althoughkidsgetmoreshotstoday,theyactuallyreceivefewer antigensthanwhentheygotfewershots,becausetechnologyhasenabledusto makevaccinesthathaveonlythepartofthecellthatinducesimmuneresponse. • Explain:Wewantallthekidsinourpracticetobeimmunizedsothatthey havethegreatestchanceforalong,healthylife.Myownchildrenarefully vaccinated.Sciencehasshownthatautismriskisnodifferentifthevaccinesare spacedoutvs.giventogether. AutismScienceFoundation.org ©2017AutismScienceFoundation,Inc.AllRightsReserved. 4 WelcometoAutism101 Formanyyears,wethoughtoncethestudiesexoneratingvaccinesasacauseofautismwerepublished thatparents’concernswouldbeallayed.Butthishasnotbeenthecase.Thegoodnewsisthatin additiontolearningthatvaccinesdon’tcauseautism,therearenewstudieshelpingusstartto understandwhatdoescauseautism.Bysharingsomeofthisinformationwithparentswemayfurther beabletoallaytheirfearsregardingvaccines. TheTypesofAutism Autismisactuallyagroupofbrain-baseddisordersthataffectaperson’sbehavioraswellassocialand communicationskills.Thesedisordersincludeclassicautism,PervasiveDevelopmentalDisorder–Not OtherwiseSpecified(PDD-NOS),AspergerSyndrome,RettSyndromeand ChildhoodDisintegrativeDisorder.TogetherthesearereferredtoasAutism SpectrumDisorders.12Typicallywhenwetalkaboutautism,wearetalking aboutclassicautism,PDD-NOS,andAspergerSyndrome. WhatisAutism? Regardlessoftheclassificationofautism,everypersondiagnosedwith autismhassomelevelofimpairmentinthreeareas: – Social-interestinpeople,jointattention,imaginativeplay – Communication-language,speech – Behavior-repetitivebehaviors,tantrums,aggression Theconnectionofsocial,language,andbehavior isaverysimplifiedviewofwhatautismmeansfor afamily.Whenachildhasautismfamiliesare mostoftendealingwithawide-rangeofmedical conditionsandbehaviors.Therearemanymore associatedsymptomsandsyndromes,like anxiety,depressionandagression,andcomorbiditieslikesleepissuesandepilepsy. 12 CDC.“FactsaboutASDs.”http://www.cdc.gov/ncbddd/autism/facts.html AutismScienceFoundation.org ©2017AutismScienceFoundation,Inc.AllRightsReserved. 5 WhatCausesAutism? Scientistshavebeenhardatworklookingforthecausesofautismandalsodevelopingnewtreatments forautism.Weknowthat15%ofautismisattributabletospecificgeneticcauses,meaningin15%of childrenwithautismwecanidentifyageneticabnormalitythatexplainstheirautism,andthatnumber risesasbettergenetictechnologiesaredeveloped.Wearediscoveringthatthegenesinvolvedin autismareinvolvedintheformationandfunctionofneuralsynpases.Synapsesarethespacesbetween neuronsthatenablecommunicationsignalstobetransmittedthroughthebrain.Bycreatingmouse modelsthatmimicthegeneticanomaliesfoundinautism,weareabletotestnewdrugsandseeifthey helptocorrecttheproblemswesee.Severalstudieshaveshownthatspecificdrugsaresuccessfulin reversingthedeficitsassociatedwithautism,atleastinmice.FDAclinicaltrialsofthesedrugsinhumans arecurrentlyunderway. However,geneticsarenottheonlycontributortoautismrisk.Researchhasshownanincreasedriskto certainprenatal,butnotpostnatal,environmentalexposures.Forexample,prenatalexposuretohigh levelsofairpollutionhasbeenconsistentlylinkedtoautism13.Drugstakenduringpregnancy,like valproicacid,ananti-epilepticmedication,isassociatedwithincreasedrisk14.Importantly,gettingthe fluorotherseriousinfectionwithafeverdoublestheriskofhavingachildwithautism.15Most scientistsagreethatitistheinteractionofgenesandenvironmentthatleadstoanautismdiagnosis. Manyoftheneuralpathwaysthattheseenvironmentalchemicalstargetarethesameasthose controlledbythegenesassociatedwithautism,leadingtoacombinationofthingsthatinfluencerisk. Vaccines,however,havenotbeenshowntotargetthesignallingfromcelltocell,andthewaythe neuronsshapeandconnectduringdevelopment. HowisAutismDiagnosed? Weareabletodiagnosischildrenyoungerandyounger.Insomestudies,childrenasyoungas6-12 monthsoldshowsignsandsymptomsofautismandlaterreceiveadiagnosis(thisiswellbeforethe infanthasreceivedmostvaccines).16Thereisalsoanew,simplescreeningtoolforpediatricianstouse 13 A Systematic Review and Meta-Analysis of Multiple Airborne Pollutants and Autism Spectrum Disorder. https://www.ncbi.nlm.nih.gov/pubmed/27653281 14 “Prenatal valproate exposure and risk of autism spectrum disorders and childhood autism.” https://www.ncbi.nlm.nih.gov/pubmed/23613074 15 “Autismafterinfection,febrileepisodes,andantibioticuseduringpregnancy:anexploratorystudy”. https://www.ncbi.nlm.nih.gov/pubmed/23147969 16 “EarlyIdentificationofAutismSpectrumDisorder:RecommendationsforPracticeandResearch. https://www.ncbi.nlm.nih.gov/pubmed/26430168 AutismScienceFoundation.org ©2017AutismScienceFoundation,Inc.AllRightsReserved. 6 onall12montholdbabies17.TheAAPrecommendsroutinescreeningforautismat18and24monthsof age. TheCDChaslistedtheseRedFlagsforAutism18 • Doesnotbabbleorcooby12months • Doesnotgesture(point,wave,grasp)by12months • Doesnotrespondtonameby12months • Doesnotsaysinglewordsby16months • Doesnotsaytwo-wordphasesonhisorherownby24months (notrepeating) • Hasanylossofanylanguageorsocialskillatanyage WhyisEarlyDiagnosisImportant? EarlyInterventionworks.Childrenwithautisminagoodearlyinterventionprogramcanmake meaningfulgainsinskills.Infact,withearlytreatment,30-50%makeenoughgainstobemainstreamed bykindergarten.Thesegainscanbesustainedformanyyearsaftertheinitialinterventionisdelivered.19 It’simportanttonotethatEarlyInterventionprogramsvarybystatesocheckwithyourlocal organizations. AutismTreatments Therehavebeenmajoradvancesinevidence-basedtreatments20.Thesearejustsomethathavebeen testedtobeeffective.Usuallypeoplewithautismneedacombinationofthesetherapiestosucceed: • AppliedBehaviorAnalysis(ABA)Therapy.BesidesthetypicalABA procedures,severalnewmodelsbasedonthetheoriesofABAhave showntobeeffective.Theseincluderelationshipdevelopment intervention,pivotalresponsetraining,naturalisticbehavioral interventionsincluding“EarlyStartDenverModel”21and“JASPER.”22 17 “Detecting,Studying,andTreatingAutismEarly:TheOne-YearWell-BabyCheck-UpApproach.” http://www.jpeds.com/article/S0022-3476%2811%2900240-X/abstract 18 CDC.“ActEarly.”http://www.cdc.gov/ncbddd/actearly/index.html 19 Parent-mediatedsocialcommunicationtherapyforyoungchildrenwithautism(PACT):long-termfollow-upofa randomisedcontrolledtrial.https://www.ncbi.nlm.nih.gov/pubmed/27793431 20 Evidence-BasedPracticesforChildren,Youth,andYoungAdultswithAutismSpectrumDisorder:A ComprehensiveReviewhttps://www.ncbi.nlm.nih.gov/pubmed/25578338 21 UCDavis.EarlyStartDenverModel.http://www.ucdmc.ucdavis.edu/mindinstitute/research/esdm/ 22 “PreschoolDeploymentofEvidence-BasedSocialCommunicationIntervention:JASPERintheClassroom.” https://www.ncbi.nlm.nih.gov/pubmed/26936161 AutismScienceFoundation.org ©2017AutismScienceFoundation,Inc.AllRightsReserved. 7 • • • • • • SpeechTherapy OccupationalTherapy PhysicalTherapy SocialSkillsTraining VideoPrompting Pharmacologicalinterventions.TheFDAhasapprovedRisperdal23andAbilify24forsymptoms associatedwithautism,butnotthecoresymptoms. Unfortunately,parentsofchildrenwithautismareoftenluredwithpromisesofimprovementby charlatansorquackslookingtomakeaquickbuck.Herearesometreatmentsforwhichthereislittleor noevidenceofefficacy: • Camelmilk • SpecialDiet(GlutenandCaseinFree) • VitaminSupplements • SecretinInjections • Anti-fungalagents • Chelation • Giantelectromagnets • HyberbaricOxygenTherapy • HoldingTherapy • NicotinePatch • Marijuana(andnotfortheparent) • SnakeOil(yes,actualsnakeoil) Sometimesparentsorthemediawillreportanecdotalevidencethatthesetreatmentswork.Webelieve thisphenomenonisduetothehighplaceboeffectweseeinautismtrials.Parentsaresoeagerfora treatmenttoworkthattheyoftenreporttremendousimprovementsevenforchildrenonplacebo. 23 PubMedHealth.http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000944/ PubMedHealth.http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000221/ 24 AutismScienceFoundation.org ©2017AutismScienceFoundation,Inc.AllRightsReserved. 8 AdditionalResources: Everyyear,thefederalInteragencyAutismCoordinatingCommittee(IACC)writesastrategicplanto guidefederalandprivatespendingonautismresearch.25Thisdocumentisablueprintforthemost pressingissuesinautismscienceandisagreatresourceforthepublichealthcommunity.TheIACCalso publishesanannualSummaryofAdvancesinAutismSpectrumDisorderResearch,26whichreportson newfindingsthathavemadethemostimpactonthefield. Thefollowingwebsitesarehelpfulresources. NationalInstitutesofHealth: • https://www.nimh.nih.gov/health/topics/autism-spectrum-disorders-asd/index.shtml • https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/AutismSpectrum-Disorder-Fact-Sheet CenterforDiseaseControlandPrevention: • https://www.cdc.gov/ncbddd/autism/index.html HealthResourcesandServicesAdministration: • https://mchb.hrsa.gov/maternal-child-health-initiatives/autism AutismScienceFoundation TheAutismScienceFoundationisanonprofitorganzationdedicatedtoscienceandevidence.ASFfunds autismresearchdirectly,andalsosupportfamiliesbyreinforcingthemessagethatnosciencecurrently existstoindicatethatvaccinescauseautism. Website:www.autismsciencefoundation.org Blog:www.autismsciencefoundation.wordpress.com @autismsciencefd @autismsciencefd @autismsciencefd @autismsciencefd 25 IACCStrategicPlanforAutismResearch–2013(currentlybeingupdated). https://iacc.hhs.gov/publications/strategic-plan/2013/ 26 IACC.“SummaryofAdvancesinAutismSpectrumDisorderResearch.” https://iacc.hhs.gov/publications/summary-of-advances/2015/ AutismScienceFoundation.org ©2017AutismScienceFoundation,Inc.AllRightsReserved. 9
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