prevention and control of viral hepatitis: the role and ... · this issue of viral hepatitis...

Vol. 17 - 1 - November 2008

Viral HepatitisPublished by the Viral Hepatitis Prevention Board (VHPB)

November 2008Volume 17 - Number 1

CONTENTS

Editorial . . . . . . . . . . . . . . . . . . . . . . . . . . 1

role and impact of umbrella organizations 2EuropeanLiverPatientsAssociation(ELPA) . . . . 2

Europeanpatientgroupsforrarediseases(EURORDIS) . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3

NationalViralHepatitisRoundtable(NVHR) . . . 3

European Federation of Pharmaceutical industriesandassociations(EFPIA)ethicalcode . . . . . . . . . 4

Wide-reaching initiatives to get attention andincrease awareness on prevention of viralhepatitis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5

EuropeanImmunizationWeek(EIW) . . . . . . . . . 5

WorldHepatitisDay(WHD) . . . . . . . . . . . . . . . . 6

HepatitisBpriorityareaforEuropeanpolicy:callforactionbytheEuropeanParliament . . . . . . 7

role and impact of patient and advocacy groups: country presentations . . . . . . . . . . . 8

Belgium:CarrefourHépatites-AideetContact(CHAC)/VerenigingvoorhepatitisCpatienten(VHC) . . . . . 8

Bulgaria:Bulgarian National Association for fightingHepatitis(HEPASIST) . . . . . . . . . . . . . . . . . . . . . 9

Croatia:CroatianAssociationofTreatedandIllwithHepatitis(HEPATOS) . . . . . . . . . . . . . . . . . . . . . 10

Germany:DeutscheLeberhilfe . . . . . . . . . . . . . . . . . . . . . . 11

italy:EpaC . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11

Poland:HCVPatientsAssociationPROMETEUSZE . . . . .12

the Netherlands:NationalHepatitisCentre(NHC) . . . . . . . . . . . . 13

UK:BritishLiverTrust(BLT) . . . . . . . . . . . . . . . . . . 14

US:TheHepatitisFoundationInternational(HFI) . . 16

Advocatingforimmigrantcommunitiesatrisk:AsianLiverCentre(ALC) . . . . . . . . . . . . . . . . . 16

Breakout sessions: strengths versusweaknesses and obstacles . . . . . . . . . . . . . . 18

Weaknessesandobstacles . . . . . . . . . . . . . . . . . . 18

StrengthsandOpportunities . . . . . . . . . . . . . . . .18

Conclusions . . . . . . . . . . . . . . . . . . . . . . . . . . 19

ThiseditionofViral Hepatitisisbasedonmaterial presented at the Viral HepatitisPreventionBoardmeetingonthe Preven-tion and control of viral hepatitis: the role and impact of patient and advocacy groups in and outside Europe, Lucca,Italy,March12-14,2008 .

Editorial

This issue of Viral Hepatitis reviews topics covered at the Viral Hepatitis Prevention Board(VHPB)/European Liver PatientAssociation’s (ELPA) spring meeting on the Prevention and control of viral hepatitis: the role and impact of patient and advocacy groups in and outside Europe,heldonMarch12-14,2008inLucca,Italy .The meeting brought together 12 national patient organizations from Europe and the UnitedStates, 3umbrellaorganizations andoneorganization representing the interests of theAsian/Pacific Islander American community, with the aim of providing an overview of the activities, role,rationaleandimpactofinternationalandnationalpatientandadvocacygroupsinEuropeandtheUnitedStatesintermsofpreventionandcontrolofviralhepatitis .Thediversityofparticipatingpatientorganizationstothisforumfavouredproductivecross-fertilization, in particular in terms of objectives, functioning structure, financial resources and efficient targeted programs and actions. Hence, it created an opportunity for them to share experiencesontheiractivities,aswellasidentifyingtheirstrengthsandweaknesses,togetherwithchallengesandthresholdsregardingtheirroleandimpactonpreventionandcontrolofviralhepatitis .During the breakout sessions purposely devoted to the identification of strengths versusweaknesses of patient organizations, it appeared that most of them successfully fulfill a common role indisseminating reliable information to theirmembersand thepublic, aswell as raisingawarenessamonghealthcareworkers .Also, in addition to their active involvement in the implementation of prevention strategies,patient groups were seen as particularly successful in reaching minorities or vulnerablepopulationswithlessriskofstigmatization .Themeetingconcludedwithachievementsandopportunities,stressingtheneedforimprovedimplementation of national prevention and control plans, better access to healthcare andcontinuouseffortstobemadetoensureequalityofaccesstopreventionandcare,includinghard-to-reachpopulations .Theroleandimpactofvariouspartneragenciesandorganizationswasalsoassessed .HBVisoftenconsideredasthepoorcousintoHIV/AIDSinEuropeanditisnotuntilrecentlythatitwasincludedontheagendaofmanypatientorganizations,mainlyasaneedresultingfromincreasedimmigration,associatedwithlowsocioeconomicstatusandinadequatehealthcareprovision .Also,thegrowingnumberofyoungerHBVpatientswarrantsremainingchallengesofpreventionstrategies tobeaddressed,suchasamoreadequateprovisionofhealthcare tovulnerableandhard-to-reachgroups,ensuringthetimelyprovisionofHBVvaccine,inparticularbirthdose,inseveralcountries .More accurate data on immunization coverage and enhanced surveillance of acute and chronicHBV cases are needed for the implementation and monitoring of appropriate preventionstrategiesand inorder toeffectivelycounteractmisleadingandbiased informationandmediastories disseminated by anti-vaccination lobbyists, with the effect of a threatened publicconfidence in the benefits of immunization. Surveillance data should also help correcting the misperceptionofHBVasavaccine-preventablediseaseandthereforelessofconcernthanHCVorHIV/AIDSforwhichnovaccinesareavailable .Hepatitis B (HBV) disease burden has significantly been reduced in the WHO European Region asaresultofcombinedeffortstowardspreventionandcontrolmeasures,including16yearsofVHPBactivitiesinEurope,withthesupportofitsmemberscomprisingtheCDC,WHO,WHO/EURO,nationalMinistriesofHealth,Universities,aswellasitsnetworkofexperts .HBVvaccine(includingbirthdose inhighly endemic areas)was successfully introduced in existing routinechildhoodimmunizationprogramsinmostcountrieswith,aslatestsuccess, theintroductionofHBVvaccineintotheIrishchildhoodimmunizationschedule .However,effortsarestillneededas8ofthe53countriesintheWHOEuropeanregiondonothaveapolicyofuniversalvaccination .Patientgroupsarealsowell-placedtobeinvolvedintheprocesstopersuadegovernments

Nadine Piorkowsky and Daniel Lavanchy on behalf of the European Liver Patients Association/ Viral Hepatitis Prevention Board

Viral Hepatitis

Meeting newsPage �

VIRAL HEPATITIS PREVENTION BOARD

Core MembersDrNedretEmirogluWHO Regional Office for Europe / EPI, WHOCopenhagen,DenmarkDrJohannesHallauerDepartmentofHealth,SozialministeriumSchwerin,GermanyDrMarkKaneSeattle,Washington,USADrAndréMeheusEpidemiologyandSocialMedicineUniversityofAntwerpen,BelgiumDrCraigShapiroDepartmentofImmunizations,VaccinesandBiologicals,WHO-Geneva,Switzerland

advisersDrSelimBadurMicrobiologyDepartmentUniversityofIstanbul,TurkeyDrHansBlystadNorwegianInstituteofpublichealth-Oslo,NorwayDrPaoloBonanniPublicHealthDepartment-UniversityofFlorence,ItalyDrClaireCameronHealthProtectionScotland-Glasgow,ScotlandDrDavidGoldbergHealthProtectionScotland–Glasgow,ScotlandDrNicoleGuérinComitéTechniqueVaccinations-Antony,FranceDrWolfgangJilgInstituteforMedicalMicrobiologyandHygieneUniversityofRegensburg,GermanyDrDanielLavanchyCommunicableDiseaseSurveillanceandResponse,WHOGeneva,SwitzerlandDrRuiTatoMarinhoUniversityHospitalSantaMaria-Lisboa,PortugalDrHaroldMargolisPediatricDengueVaccineInitiativeInternationalVaccineInstitute-Seoul,KoreaDrVassilikiPapaevangelouDepartmentofPediatricsUniversityofAthens,GreeceDrFrançoiseRoudot-ThoravalPublicHealth,HôpitalHenriMondorCréteil,FranceDrDanielShouvalLiverUnit,HadassahUniversityHospitalJerusalem,IsraelDrJohnWardLiasionadviserDivisionofViralHepatitisatNCID,CDCAtlanta,Georgia,USADrStevenWiersmaLiasonadviserDivisionofViralHepatitisatNCID,CDCAtlanta,Georgia,USADrAlessandroZanettiInstituteofVirology-UniversityofMilano,Italy

Honorary advisersDrPietroCrovariInstituteofHygieneUniversityofGenoa,ItalyDrAlainGoudeauUniversitédeTours,FranceDrPeterGrobZuniken,SwitzerlandDrEricMastDivisionofViralHepatitis,NCID,CDCAtlanta,Georgia,USADrElisabethMcCloyDorking,Surrey,UnitedKingdomDrColetteRoureDirectionGénéraledelaSanté/SD7Paris,France

Executive SecretaryDrPierreVanDammeCentrefortheEvaluationofVaccinationVaccineandInfectiousDiseaseInstituteUniversityofAntwerpen,Belgium

Executive SecretariatMsGreetHendrickxMsEmmyEngelenMrAlexVorstersCentrefortheEvaluationofVaccinationVaccineandInfectiousDiseaseInstituteUniversityofAntwerpen,Belgium

rapporteursDrVéroniqueDelpire-Brussels,BelgiumDrAnitaVanderpooten-Brussels,BelgiumMrDavidFitzSimons-Geneva,Switzerland

Prevention and control of viral hepatitis: the role and impact of patient and

advocacy groups in and outside Europe Lucca, Italy, March 12-14, 2008

Role and impact of umbrella organizations

Thissessionwasdevotedtothepresentationsofseveralumbrellaorganizationswithcommonaims:ELPArepresenting the interestsof liverpatients inEurope, thenational roundtableworking toeliminateviralhepatitisintheUnitedStates(NVHR),andanumbrellaorganizationrepresentingtheinterestsofpatientswithrarediseasesinEurope(EURORDIS) .Inaddition,theEuropeanFederationofPharmaceuticalIndus-triesandAssociations(EFPIA)codeofpracticewaspresentedwithinthecontextofrelationshipsbetweenindustryandpatientgroups .

European Liver Patients Association (ELPA) TheEuropeanLiverPatientsAssociation(ELPA,www .elpa-info .org)emergedfromadesireamongstliverpatientgroupsacrossEuropetosharetheirexperiencesoftheoftendifferentapproachesadoptedindiffer-entcountries .

ELPAwaslaunchedin2005withtheaimsofincreasingawarenessandpreventionamonghealthcarepro-fessionals, policy makers and the general public; addressing the low profile of liver disease compared to otherdiseaseareas;andshareexperiencesof successfulcases in termsofdiseasemanagement throughcoordinatedcampaignsandmessagesacrossEurope .

ELPArepresents20patientgroupsoutof17Europeancountriesand theiraimistopromotetheinterestsofpeoplewithliverdisease,withthefollowingmandate:

• Raiseawarenessandpromoteprevention• Promote well-defined targeted screening of viral hepatitis across Europe• Address the low profile of liver disease as compared to other areas of medicine such as

heartdisease• Shareexperienceofsuccessfulinitiatives• Workwithprofessionalbodiessuchas theEuropeanAssociation for theStudyof the

Liver(EASL)andwiththeEUtoensurethattreatmentandcareareharmonisedacrossEuropetothehigheststandards

• CoordinatecampaignswithuniformmessagesacrossEurope

KeyprioritiesarepartofsixEU“requests”ontheoccasionofthe2008WorldHepatitisDay,asfollows:1 .AdoptionofanEUCouncilRecommendationontargetedscreeningforviralhepatitis

acrossEurope,ensuringearlydiagnosisandwideraccesstotreatmentandcare2 .CommitmentofEUMemberStatestoimplementthefutureEuropeanCentreforDisease

PreventionandControl(ECDC)criteriaforthesurveillanceofviralhepatitis3 .Recognitionthattargetedhepatitisscreeningofriskgroupswilleffectivelypreventcom-

plications,suchasliverscarringandlivercancer4 .Commitmenttoworkinpartnershipwithhepatitispatientgroupstoensureacoordinated

campaigntoraisepublicawareness5 .CommitmenttoaEuropeanstrategytoprotecthealthcareworkersfromblood-bornein-

fectionssuchashepatitisduetoneedlestickinjuriesbyamendingDirective2000/54/EConrisksfrombiologicalagentsatwork

6 .ProvisionofEUfundingforfurtherresearchontreatmentforviralhepatitis,especiallyforcasesofco-infectionwithHIV


Meeting news Page �

KeyELPAachievementsin2007havefocusedonsuccessfullobbyingac-tivitiestoraisetheimportanceofviralhepatitiswithintheEuropeanPar-liamentwith,asaresult, theadoptionofaWrittenDeclaration,anOpenDiscussionForumonHCVandaPanelDiscussionfortheWorldHepatitisDay .ELPAalsocontributedtothesuccessfulinclusionofviralhepatitisintheECDC2008workprogram .

KeyELPAobjectivesfor2008aimatthegenerationofreliableandcompa-rabledataacrosstheEuropeanUnion,involvingECDC,andthecommit-mentofEUMemberStatestoimplementfutureECDCcriteriaforsurveil-lance .Suchdata should, in turn, support theadoptionof anEUCouncilRecommendationon targetedscreeningforviralhepatitisacrossEurope .Thesekeyprioritieswerepresentedattheoccasionofthe2008WorldHep-atitisDay(seebottomofpreviouspage) .

European patient groups for rare diseases(EURORDIS)EURORDIS(www .eurordis .org)missionistobuildastrongpan-Europeancommunity of patient organizations and individuals living with rare dis-easesinordertobetheirvoiceatEuropeanleveland,directlyorindirectly,fighting against the impact of rare diseases on their lives.

EURORDISrepresents>341memberorganisations in38differentcoun-tries(24EUmembers),coveringmorethan1000rarediseases .To date, 6000-8000 rare diseases have been identified, affecting a total of 30millionindividualsintheEU,representing6-8%ofthepopulation .Rarediseases are commonly defined as affecting 1-2000 citizens per country, 80 %areofgeneticorigin,withfewandgeographicallyspreadpatients .Asaresult,resourcesarelimited,diseaseexpertsarefewandrelevantinforma-tionisscarce .Researchisfragmentedandspecialisedcarecentrescannotbesetupineverycountry .SuchcharacteristicswarranttheneedforanumbrellaorganizationsuchasEURORDIS,aimingatnetworking and information sharingthroughan-nualmembershipmeetings,participationatconferences,aswellaswebsiteandmonthlynewsletterdissemination .Asecondpriorityfortheorganiza-tion isadvocacy and policy development throughEURORDISpresenceinEuropeaninstitutionsandplatforms .access to information, diagnosis, treatment and care are also key areas supported by initiatives such asthedevelopmentofguidelinesforthecreationandmanagementofpatientgroups and information services, mapping of patient group profiles and ac-tivities in Europe, scientific surveys to increase advocacy power (such as the EURORDISCAREprogram:aseriesofsurveystocompareaccesstocareforrarediseasepatientsacrossEurope),andtrainingsessionsforpatientrepre-

sentatives .EURORDIS is also active inpromoting therapeutic develop-ment and researchbycreatingprogramssuchasEuroBioBank,aEuropeannetworkofbiobanksofDNA,cellsandtissueforrarediseaseresearch .EURORDIS is also involved in the development of online patient com-munitiesviamailing listsandseveralsolidarity initiativesat the levelofindividuals .EURORDISpatientrepresentativesalsoplayakeyroleinpromotingpa-tientaccesstoorphandrugs,mainlybycontributingtopolicydevelopment,inparticularEUregulations;beinginvolvedinthedecision-makingprocessthroughactiveparticipationontheCommitteeonOrphanMedicinalProd-ucts(COMP)oftheEuropeanMedicinesAgency(EMEA),andvalidatinginformationtothepublic .Orphanmedicinalproducts(OMPs)wereavail-ablebycountryinEurope,asfollows:

EURORDIShasthefollowingpriorities:• Empoweringrarediseasepatientgroups• Advocatingrarediseasesasapublichealthissue• Raisingpublicrarediseaseawareness,andalsothatofna-

tionalandinternationalinstitutions• Improvingaccesstoinformation,treatment,care,andsup-

portforpeoplelivingwithrarediseases• Encouraginggoodpracticesinrelationtothese• Promoting scientific and clinical rare disease research • Developingrarediseasetreatmentsandorphandrugs• Improving quality of life through patient support, social,

welfareandeducationalservices

National Viral Hepatitis Roundtable (NVHR)NVHR(www .nvhr .org)isacoalitionofmorethan100organizationsworkingtoeliminateviralhepatitisintheUnitedStates,bydeveloping,implementingandmaintaininganationalstrategyfocusingonallaspectsofviralhepatitis .CurrentNVHRmembersincludeprofessionalgroups,HBVandHCVad-vocacygroups,harmreductionorganizations,AIDS/Hepatitisco-infectiongroups,generalhepatitisorganizations,generalhealthorganizations(thatareconcernedaboutviralhepatitis),federalgovernmentagencies,stateandlocalhealthdepartments,andmanufacturers .NVHRhasa10-memberboardofdirectors,andanadministrator .Ithaditsbeginning in 2002 by three founding partner organizations with financial support from industry. NVHR was officially launched in 2003 with a na-tionalmeetingattendedbynearly200individualsrepresentingmorethan100organizations .HepatitisA,B,andCwerethefocusofalldiscussionsatthe first national conference with particular attention to policy and legisla-tion,preventionandscreening,educationofpublicandproviders,careandtreatment,andresearch .From2004to2006,NVHRstreamlineditsworkonthedevelopmentandeventualpublicationofitsactionplanwhichwasdeliveredtoCongressinMay2006[1] .

NVHRgoalstoeliminateviralhepatitis:1 .Buildthecapacitytoeliminateviralhepatitis2 .VaccinateAmerica3 .Counsel,test,andreferpersonsatriskforchronicdisease4 .Careforpersonswithchronichepatitis

Orphan medicinal products (OMPs)

Viral Hepatitis


NVHRaimstobuildnationalcapacity toeliminateviralhepatitisbyob-tainingfundingfrompublicandprivatesectorsforbuildinghealthcarein-frastructure,disseminatinginformation,promotingvaccinationasthemosthumaneandcost-effectiveintervention,acceleratethedevelopmentofanHCVvaccine;expandingcounselling,testing,andreferralservicesforper-sonsat risk forviralhepatitis;expandinghealthcareservices forpersonswithchronichepatitis,andexpandingresearchonviralhepatitis .

Todate,NVHRmain accomplishments have involved thepublicationof anationalplanadvocatingfortheeliminationofviralhepatitis,thecreationofanationalcoalitionoforganizationscaringaboutandworkingtogetheronviralhepatitisissues,disseminationofinformationonpolicyissuesasneedsarise,aswellasanimportantadvocacyrolewithCDCbybringingandenlargingcommunityvoicestopolicydecisions .Today,NVHRongoingchallengesarelimited funding, the identification of the ideal organizational structure, contin-uedeffortstowardtheimplementationofitsactionplanbyCongress .

InJuly2008,NVHR,inpartnershipwiththeNationalAllianceofStateandTerritorialAIDSDirectors(NASTAD),submittedaproposal to theCDCfor funding under a five-year cooperative agreement for networking, part-neringandinformationdissemination .ThisproposalwasacceptedandwillcommenceinOctober2008 .ThefundingwillenhanceNVHR’scapacitytolinkviralhepatitiscoalitionsandorganizationsintheUnitedStates;thusincreasing these organizations’ influence on viral hepatitis prevention and controlbyleveragingtheresourcesandpowerofacollectivevoice .

European Federation of Pharmaceutical Industries and Associations (EFPIA) ethical code EFPIAmembersinclude32Europeannationalindustryassociationsand44pharmaceuticalcompaniesandhasspecializedgroups, suchas theEuro-peanVaccineManufacturers(EVM,www .evm-vaccines .org) .

EFPIAhasestablishedacodeofpracticewithpatientorganizationstoen-surethatrelationshipstakeplaceinanethicalandtransparentmanner,guar-anteeing the independence of patient groups (e .g . funding from multiplesources),mutualrespect,transparency,andnon-promotionofprescription-onlymedicines .

TheEFPIAcodeofpracticewasupdatedin2006inordertoensurecon-sistentethicalindustrybehaviouracrossEurope;helpmeetingstakehold-ers’expectationsoftransparencyandcontributetosuccessfulrelationshipsand partnership with patient groups. Its scope is to define the relationship betweenEFPIAmembers/subsidiaries/contracted3rdpartiesandpatientor-ganizations operating in Europe in the form of non-profit (and umbrella) organizationscomposedofpatientsand/orcaregiverswhorepresentand/orsupporttheneedsoftheirmembers .

reference[1] Eliminating Hepatitis: A Call To Action. NHVR Plan to Eliminate Viral

Hepatitis available at www.nvhr.org/pdf/NVHR_CalltoAction.pdf, ac-cessed on 20 June 2008.

Based on presentations byNadine Piorkowsky,

European Liver Patient Association (ELPA);Michele Lipucci di Paola,

European Organisation for rare diseases (EURORDIS);Deborah Wexler,

Immunization Action Coalition/Hepatitis B Coalition, Saint Paul, MN, USA;

Luc Hessel,European Vaccine Manufactures (EVM).

EVMhasthefollowingmission:• Createasupportiveenvironmentforimprovedvaccinepro-

tectionandcoverageintheinterestofindividualandcom-munitypublichealth

• PromotevaccineR&Dtomeetnewchallengesforinnova-tivevaccineapplicationsagainstinfectiousandothertypesofdiseases

• FosterafavorablepolicyclimateforthevaccineindustryinEuropetobringnewvaccinestotheworld

Thelatestversionofthecodeiseffectiveasof1July2008andshouldbeimplementedbyEFPIAmemberassociationsatnationallevel;itsprovisionsarelistedbelow:

1 .Non-promotion of prescription medicines: prevents ad-vertisingtogeneralpublic

2 .Written agreements with patient groups: ensure a clearrole of industry and patient groups with the help of adocumenttemplatementioningpurpose,amountofdirectfunding, and indirect financial/non-financial support

3 .Useoflogosandproprietarymaterials:writtenpermissionshouldbeobtainedfrompatientorganisationtousethem

4 .Editorialcontrol: no influence should be exerted on edito-rialcontenttofavourcommercialinterest

5 .Transparency: sponsorship should be clearly acknowl-edged and companies should make a list of sponsoredpatient groups (including financial/non-financial support) publiclyavailableonayearlybasis

6 .Diversified funding:preventscompaniesfrombeingsolefundersofpatientgroupsortheirmajorprograms

7 .Eventsandhospitality:mustbeheldinappropriateven-ues,with reasonable level, and secondary topurposeofevent;theyshouldbelimitedtotravel,meals,accommo-dationandregistrationfees

8 .Enforcement: implementation and procedures are laiddownintheappendicesofthecode

EFPIA’srationaletocollaboratewithpatientgroupsistobetterunderstandandaddresspatientneedsandconcernsonresearch,medicinesandmedicalinterventions;supportprogramsthatimprovepublichealthandlivesofin-dividualswithmedicalconditions;andshareprioritiesonaccesstomedicalinterventions(preventionandtreatment)thatbestmeetpatientneeds .

EVM’sperspectiveontheimportanceofworkingwithpatientgroupsfo-cuses on specific aspects related to vaccines, such as the introduction of new productsforhealthychildrenandadultsandtheneedtoensureadoptionofvaccinationprogramsbythegeneralpublic,hencethekeyroleplayedbypatientgroupsintermsofawareness,education,information/communica-tionandadvocacy .



Wide-reaching initiatives to get attention and increase awareness on prevention of viral hepatitis

European Immunization Week (EIW)TheEuropeanImmunizationWeek(EIW)isarecentinitiativeofWHO’sRegional Office for Europe aimed to promote immunization through advo-cacyandcommunicationacrosstheregion .Despitethestrongimmuniza-tion programs in place in most countries of theWHO European region,memberstatesstillfacechallengeswarrantingsupportofinitiativessuchastheEIW .HBVimmunizationcoverageratesintheWHOEuropeanRegionincreasedfrom42%in2000to74%in2006butcoverageisstilllowerthanfortraditionalvaccines(seegraphbelow) .

entmemberstatesaccordingtotheirneedsandchallengesatnationalandregionallevel,whichisusuallydonethroughNationalWorkinggroups .Furthermore,arangeof importantregionalandnationalpartners, includ-ingtheEuropeanCentreforDiseasePreventionandControl(ECDC)andUNICEF,supporttheplanningandimplementationofEIW .

The first EIW took place in October 2005, engaging 9 member states (Be-larus,Belgium,Hungary,Ireland,Italy(SouthTyrol),RussianFederation,Tajikistan,MacedoniaandSerbia) .Activitiesduringthispilotinitiativein-cludedthelaunchofawebsiteaswellasoutreachactivitiesofmobileteamsvaccinatingchildreninremoteregionsorvulnerablecommunities .

The second EIW took place inApril 2007 involving 25 member states,therebycoveringasubstantialpartoftheWHOEuropeanregion .

Numerous challenges were targeted at national level during this secondEIW,dependingoncountryneeds .Somecountriesfocusedonvulnerablehighriskchildrenandcommunities(e .g .Rumania,AlbaniaandMacedo-nia),othercountriestargetedyoungadults(Germany,France,Belgium)orwomenofchildbearingage(Turkey) .Activitieswererelatedtodifferenttopics,suchaspolioeradication,measlesandrubellavaccination,theintroductionofneworunderutilizedvaccines,orqualityandsafetyofimmunization .Differentapproacheswereused,in-cludingdisseminationofinformationmaterialsforparentsandhealthpro-fessionals, organizationof outreach activitiesperforming actual vaccina-tions,emphasisonplannedimmunizationactivities,aswellasorganizationoftrainings,conferencesandworkshops .Mostcountriesinvolvedthemassmediaandsomewereabletoengagedecisionmakers .Inordertoensureacommoncharacterofthisinitiativewithitsdifferentindividualactivities,acommonsloganandlogowasusedregion-wideandadaptedintonationalcontextsandlanguages .

AnevaluationofthispilotEIWwasoverallverypositivewiththefollowingrecommendations:• tocontinueandexpandtheinitiative• tomaketheEIWanannualinitiative• toinvolvemorecountries,makingitaregion-wideinitiative• tochangethetimingoftheweek

Theoverallhighcoverageratessometimeshidegroupsofhighriskunvacci-natedchildrenstillexistingacrosstheEuropeanRegion .ForinstanceinsomeCaucasiancountries(Armenia,GeorgiaandAzerbaijan)withhighnationalcoverage,someregionsdonotreach75%coveragefortraditionalvaccines .Also,somecountriesdonotreporttoWHOandnodataareavailable .

BasedoncoverageratesitisestimatedthatintheEuropeanregion,annu-ally,upto600,000infantsstillmissroutineimmunizationwithtraditionalvaccinesandthat32,000youngchildrendieeveryyearfromvaccine-pre-ventablediseases .Outbreaksofinfectiousdiseasescontinuetooccurwitharemainingriskofre-emergenceofdiseaseseffectivelycontrolledtodate .In addition, public confidence in vaccines became affected by groups, web-sitesorthepressquestioningthenecessityandsafetyofvaccination .Unfor-tunately,immunizationlosespoliticalcommitmentinsomecountriesduetoothercompetinghealthpriorities .Therefore,in2005,theWHOEuroperegionalcommitteeadoptedresolutionEUR/RC55/R7urgingallEuropeanregioncountries tosupport,whereappropriate, the implementationofanimmunizationweektopromoteimmunizationwithintheregion .

Thelong-termobjectiveoftheEIWistoincreasethesuccessofimmuniza-tionprogramsbyraisingawarenessontheneedandrightofeverychildtobeprotectedagainstvaccine-preventablediseases,placingaspecialfocuson vulnerable, high risk groups and taking into consideration the differ-ences in health system organization across the different countries, whileaimingatthesametimeforacommoninitiative .

TheEIWiscoordinatedfromanoverallperspectivebytheWHORegionalOffice for Europe by providing a common framework (e.g. planning guide-lines,developmentanddisseminationoffactsheets,websitesandpromo-tionalmaterials[1]) .Thesecanbeadaptedandimplementedbythediffer-

Theaimistoestablishacommonframeworkto:• Raiseawarenessatalllevelsacrosstheregionthroughad-

vocacyandcommunication• Joinforcestomobilizeresourcesforimmunization• Establishamechanismforinter-countryexchangeofknowl-

edgeandexperiences• Combineeffortsandmaximizesynergy– throughacom-

monandcoordinatedapproach

Viral Hepatitis


DiscussionoftheresultsofthissecondEIWconcludedthatthe2007EIWsucceededinhighlevelpoliticalcommitment,notonlyatregionallevelbutalsoatnationallevel .Importantly,activitieswerenotlimitedtodissemina-tionofinformationandmanycountriestriedtoengagetargetgroupsinaconstructivedialogue,therebymakingtheEIWaninnovativeandcreativeinitiativeaimingtoreachtargetgroupsthroughnumerouschannels,beyondcampaignactivities .Insomecountries(e .g .Belgium),generalpractitionersusetheEIWasanopportunityandcommonmomenttoorganizetheirac-tivitiesaroundraisingawarenessontheimportanceofimmunization .

Allcountriesrecommendedparticipationinthe2008EIW,asmostconsid-eredthe2007EIWtobeasuccess(withpositivemediacoverageinallbutonecountry)andareconvincedthattheinitiativewillhelpincreaseimmu-nizationcoverage,especiallyinremoteandvulnerablegroups .

Futurechallengesaretomaintainsuccessesandachievements,andconsoli-datecommitmentfrommemberstates .Fromdiscussionsduringthismeet-ing itwas felt thatmoreproactive involvement of patient groups in thisannualinitiativewouldbeofaddedvalue .

ThethirdEIWtookplace21-27April2008with33countriesparticipating .Thefourtheditionisscheduledfortheweekof20-26April2009[1] .

World Hepatitis Day (WHD)Backin2002,theBritishLiverTrustsuggestedtheideaofgettingtogetherEuropean hepatitis C patient groups. In 2004, these groups chose the first ofOctobertobeHepatitisCAwarenessDay .Meanwhile,thegroupscre-atedaformalorganisationcalledtheEuropeanLiverPatientsAssociation(ELPA)inJune2004andformallylauncheditatthe2005meetingoftheEuropeanAssociationfortheStudyoftheLiver(EASL)inParis .In2006,HepatitisCAwarenessDaywasbroadenedtoWorldHepatitisAwarenessDay(WHAD)bringingHBVandHCVpatientgroupstogether,asitwasfeltthatcombiningbothdiseaseswouldincreasetheimpact .Unfortunately,October1clashedwithothereventsinsomepartsoftheworldandsosev-eralpatientgroupswouldnotparticipate .Inaddition,thedrivingforcebe-hindWHADwasthepharmaceuticalindustryandmanypatientgroupsfeltthiswasinappropriate .

Inconsequence,patientgroupstooktheinitiativeandorganisedameetingin Barcelona during EASL 2007 of patient representatives from Europe,NorthAmerica,SouthAmerica,Africa,ChinaandAustralasiaaswell asindustry and WHO’s Regional Office for Europe. It was agreed that a single WorldHepatitisDaywasessential, despite the recognition that there arealreadytoomany‘worlddays’ .May19thwaschosenasthedayanditwasagreedtosetupasteeringcommitteetoorganizetheinitiative .However,themeetingfailedtocometoanagreementoncommonmessagesaddress-ing both diseases, in particular due to discrepancies in terms of vaccineavailabilityandaccesstotreatmentbutalsogenerallyduetonationalandregionaldifferencesintermsofkeyissuesrelatingtoHBVandHCV .

Towardstheendof2007theorganisingcommitteewasformallyestablishedasaGeneva-basedNGOcalledtheWorldHepatitisAlliancewithaboardofpatientgroupseachrepresentingoneofsevenworldregions:Europe,East-ernMediterranean,NorthAfrica,NorthAmerica,SouthAmerica,Austral-asia and Western Pacific. The Alliance is responsible for the administrative and financial aspects of the WHD organization.

OneofthecomponentsoftheWHDinitiativeinvolvesateasercampaignAmInumber12?(seeillustrationnextcolumn),tobeusedinpublicplacesanddrawmediaattentiontothefactthat,globally,1in12individualsare

estimatedtobechronicallyinfectedwithHBVorHCV,whichequatestoaround500millionpeople[2,3] .Interestisalsoraisedviaawebsite(http://www .worldhepatitisday .com or www .aminumber12 .org) providing infor-mationoncountriesinvolvedandeventsorganized .

TheaimsoftheWHD:

• to provide a focus for countries to support their individualmessaging

• toensurethatWHOendorsestheday(19May2008wastheopeningdayoftheWHOGeneralAssembly)

• topersuadeWHOtoadoptviralhepatitisasoneofitskeydisease areas, along with HIV/AIDS, malaria and tuber-culosis(TB)

• to put pressure on national governments to adopt 12 keymeasurestotackleviralhepatitiseffectively(seebelow)

• toimprovesurveillanceofchronicviralhepatitisworldwide• tobuildmomentum

Governmentsandpolicymakerswillbeaskedtotakeurgentactiontoad-dressthechronicHBVandHCVepidemics .Thetwelvekeymeasuresrep-resentpoliticalrequestsforacommitmenttoasoundhepatitisprogramtobeadoptedby2012 .

Thefollowing6requestsarecommonacrossallcountries:

1 .Public recognition of chronic viral hepatitis as an urgentpublichealthissue

2 .Appointmentofanindividualtoleadgovernmentstrategynationally

3 .Developmentofapatientpathwayforscreening,diagnosis,referralandtreatment

4. Clear, quantifiable targets for reducing incidence and pre-valence

5. Clear, quantifiable targets for reducing mortality

6. Clear, quantifiable targets for screening

The6remainingrequestsdependonthecircumstancesinindi-vidualcountries .Anexamplewouldbe:

1 .Effectivesurveillanceandpublicationofnationalincidenceandprevalencestatistics

2 .Commitment to examine cases of best practice interna-tionally

3 .Commitmenttoworkwithpatientgroupsinpolicydesignandimplementation

4. Provision of free and anonymous (or confidential) testing

5 .Publicawarenesscampaign thatalertspeople to the issueandiscommittedtoreducingstigma

6 .Commitmenttoanongoingnationalvaccinationprogram



The first global WHD was launched on 19 May 2008 in Geneva with the WorldHepatitisAlliance,internationalhealthandpatientgroupsandcam-paignsponsorscomingtogethertoraiseawarenessonthestaggeringglo-balimpactofviralhepatitis .Activitieswillnotbelimitedto19MaysinceWHDisanongoingprojectwithparticularfocusontheneedforimprovedsurveillance to address the lack or limited availability of good nationalprevalenceandincidencedataonHBVandHCV .Examplesofbestpracticewillbeprovidedusingprintedandinteractiveweb-basedmaterials .

TheWHDisanentirelypatient-drivenprojecttoraisepublicawareness .Todate,theWorldHepatitisAlliancerepresentsmorethan200HBVandHCVpatientgroupsfromaroundtheworld .However,endorsementandpartner-shipwithmanypartnersisrequiredtomakeitasuccessfulinitiative .Otherimportantworldhealthorganizations(e .g .GAVIAlliance,PanAmericanHealthOrganisation(PAHO),MédecinssansFrontières)haveendorsedtheinitiative,aswellasprofessionalorganizations(e .g .,EuropeanAssociationfortheStudyoftheLiver(EASL),theLatinAmericanAssociationfortheStudyoftheLiver(ALEH)),VHPBandnon-pharmaceuticalindustry .

EndorsementfromWHOisconsideredofsubstantialimportanceandhasbeen requested. To aid this, a unified, general consensus on an updated fig-urefortheglobaldiseaseburdenofviralhepatitis(bothHBVandHCV)isrequired,sincethisnumberwillmakethemessagecompelling .TheGlobalBurden of Disease Project (www .globalburden .org) is currently workingwithWHOonthis,incollaborationwiththeAlliance .

Hepatitis B priority area for European policy: call for action by the European ParliamentHBVrecommendationsweremadeinadocumentissuedbyanexpertgroupchairedbyDrT .Ulmer,MemberofEuropeanParliament(MEP),andenti-tledEuropean orientation towards the better management of Hepatitis B in Europe .ThisdocumentistheresultofacollaborativeeffortbetweenMEPs,EASL,VHPBandELPA .Thedevelopmentoftheserecommendationswasinitiatedduring theStakeholders’meetingat theEuropeanParliament inApril2006,followedbyacall for actionintheEuropeanParliamentinthesame year. A group of experts then prepared the document which was final-izedduringtheStakeholders’meetingattheEuropeanParliamentin2007 .

TheHBVrecommendationstogetherwiththeWritten Declaration on Hep-atitis C(issuedbyELPA)shouldbeseenascomplementarydocumentsforacomprehensiveEUpolicyonviralhepatitis .

Unlikeother infectiousdiseases suchasHIV/AIDS,HBVhas not received appropriate political focus in Europeanpolicy,hencethefollowingrecommendations:• To present key recommendations that may help build a

cohesive European policy on the management of HBV .The recommendations formapolicydocument andaimtoraiseawarenessamongstEuropeanaswellasnationalpolicymakers of the critical importance of HBV in Eu-ropeandbeyondandencourageall stakeholders to takeownershipforthebettermanagementofHBVwithintheirrespectivespheresofactivity

• To thisend, the recommendationsproposecriticalareaswherepoliciesareneededandofferapracticallistofac-tionsthat,ifimplemented,mayhelppavethewaytoim-provingthepreventionandmanagementofHBVacrossEuropeandbeyond

A first point addressed in the HBV recommendations document is the need forEuropetotaketheleadinrecognizingchronicHBVasoneofthemostimportantblood-borneandsexuallytransmittedinfectionsandmakingitapriorityareaforpublichealthpoliciesandactions .TheEuropeanCommis-sion should set clear public health objectives that may be quantified at each countrylevelforthegradualeradicationofHBV .ItisalsorecommendedthatHBVisafocalpointofWorldHepatitisDay2008 .

The recommended strategy is a holistic strategy involving all Europeancountries,aimingtoimprovethepreventionandmanagementofHBV,withfocusonthequalityoflifeofthoseaffectedbyHBV,andinvolvingHBVadvocacy groups as well as professional and scientific organizations. Fur-thermore,nationalpoliciesmusthaveasanexplicitgoalthesocialintegra-tionofHBV-infectedindividualsandseektoactivelyprotecttheirhumanrightsandcombatstigmaanddiscriminationagainstthem,ashasbeendoneinthepastforpatientswithHIV/AIDS .

Advocacy groups should work with policymakers, public health depart-ments,healthprofessionalsandotherstakeholderstoensurethat,wherevertheyaccessthehealthsystem,individualsareofferedclear,consistentandcomplete informationonprevention, screeningand treatmentoptions forHBV . This should increase awareness and understanding of the diseaseandoverturnmisconceptions .Auniformandcohesivevaccinationpolicyis needed across the EU, given the high levels of immigration . Lack ofuniformityinvaccinationpoliciesthreatensthepotentialforEU-widestrat-egiestocontainthespreadofHBV .Inaddition,vaccinationprogramsforimmigrantsmustincludefullfollow-upforallpersonsvaccinatedfocussingon thequalityof appropriate care, counsellingand treatmentoptionsof-feredasacompletehealthservicepackage .

The first report on HBV surveillance across Europe, published by the ECDC in June 2007, found significant heterogeneity in the availability and quality ofdataonHBVacrossEurope .TheHBVrecommendationsthereforestatethatitisessentialtodevelopreliabledatacollectionsystemsthatmeasurethefullburdenposedbyHBV,intermsofacuteandchronicdisease,sothatappropriatepublichealthmeasuresmaybetaken .

Likevaccination,screeningisequallyimportant .Inparticular,localcom-munitieswithhighproportionsofimmigrantsfromhigh-prevalencecoun-triesshouldbeengagedinthepreventionofHBVwithintheircommunities .Advocacygroupscanplayan important role inensuring that thehumanrightsandciviclibertiesimplicationsofscreeningofimmigrantsarecon-sideredandaddressedexplicitlyinallgoverningpolicies .Finally,therecommendationsforeseethattheEUHBVstrategyhavetobeimplementedatnationallevelacrosstheEUandbeyond(e .g .meetingsinnationalparliamentsinGermany,ItalyandFrance) .

references[1] World Health Organization, Regional Office for Europe. European Im-

munization Week. www.euro.who.int/eiw. Accessed 28 May 2008.[2] Lavanchy D. Hepatitis B virus epidemiology, disease burden, treatment,

and current and emerging prevention and control measures. J Viral Hepat 2004;11:97-107.

[3] World Health Organization. Initiative for Vaccine Research, Viral Can-cers, Hepatitis C. 2006. www.who.int/vaccine_research/diseases/vi-ral_cancers/en/index2.html. Accessed 28 May 2008.

Based on presentations by Ludmila Mosina, WHO’s Regional Office for Europe;

Charles Gore, World Hepatitis Alliance/Hepatitis C Trust.

Viral Hepatitis


Role and impact of patient and advocacy groups: country presentations

CHACandVHCmembersarevolunteers,includingapresident,secretary,treasurerandafewotherhelpinghands .Alldecisionsaremadebyconsen-susduringtheirteammeetings .Bothorganisationsworktogetherwithanadvisoryboardcomposedofmedicaldoctors .Financialsupportisobtainedthroughmembershipfees,donations(withtaxreductionincentive),fund-raisingeventsandthroughlocalbranchesofpharmaceuticalindustries .Nostructuralgovernmentalsupportisprovidedbutlimitedsupportisoccasion-ally received for specific actions.

CHACandVHC’smaintargetaudienceincludespatientsandtheirfami-lies,riskgroups,governmentandmediawhomtheyreachviainformationphoneline,email,viralhepatitisnewsletter(paperandelectronicversion),website:www .hepatites .be[CHAC]/www .hepatitisc .be[VHC]andonlineforum .CHACandVHCalsoorganizefora invariouscities,conferencesinschoolsandnursingschoolsandtakepartinParliamentcommissionstopreparelawprojects .

activities including prevention initiativesCHAC andVHC are mainly active in the dissemination of information,which is checked and approved by medical doctors . They also providesupport services topatients .Bothorganizationsare followingup the lat-est national and international research in the field and conduct surveys e.g. onpatientperceptionof their illness .All information isdisseminatedvia

differentcommunicationchannels,publishingbooks(e .g .testimonialsandspecialist information) and flyers; mailing; organizing meetings and confer-ences,aswellasquestion/answersessionsinseveralhospitals,etc .Further-more,CHACandVHCaretakingpartinpublicandmediaeventsandareactivelylobbyingatseveralgovernmentallevelsinBelgium .

Book: patient testimonials

A poster, a flyer

Thissessionwasdevotedtopresentationsofnationalpatientorganizationsfromdifferentcountries,focusingoneachorganization’shistory,roleandobjectives, structure, target audience, support and financing, and services and activities, including any specific initiatives relating to disease preven-tion .Strengthsandchallengesofeachorganization,withparticularfocustowards improvedprevention,were also discussed and, wherever appro-priate,country initiativesorexperiencesofparticular interestwerehigh-lighted .Whenavailable,informationwasalsoprovidedonrelatedgroupsactiveinthecountry .

Belgium: Carrefour Hépatites-Aide et Contact (CHAC) /Vereniging voor hepatitis C patienten (VHC)

organizations’ history, structure, funding, objectives and target audience Belgiumhas2associationsoperatingintheirownlanguage:French-speak-ing CHAC has ~1000 members and was founded in 2001 while Dutch-speakingVHChas700membersandwasfoundedin1999,sharingacom-mon aim of helping patients and lobbying for a national prevention andpatientcareplan .

CHACandVHC’sroleandobjectivescanbefurtherdescribedas:

• Unitefellowsufferers• Gatheranddistributeinformation• Claimpreventionandbattleagainsthepatitis• Drawauthorities’&medicalprofessions’attentiontohepatitis• Lookafterourmembers’interests

• Provideinformationtothemedia

With regards to specific activities targeted at prevention, CHAC and VHC have their own information folder distributed to general practitioners,schools,drugpreventioncentres,etc .Conferencesandsymposiaareorgan-izedtoinformthepopulationandguidelinesfortattooingaredisseminated .AnationalcampaignforHAVandHBVvaccination(seeillustrationbelow)wasorganizedtogetherwithpartnerswhileongoinglobbyingactivitiesaimatobtainingreimbursementforHAVandHBVvaccinationofchronicHCVpatients .Finally,CHACandVHCarealsoactiveinthedevelopmentofalawprojectrelatedtoprevention .

Strengths and challengesCHACandVHCaretheonlytwohepatitispatientassociationsinBelgium,providinginformationtomediaandpatients,aswellascommittedtotheorganizationofanationalcampaignontheoccasionoftheWHD .CHACandVHCaretwomainorganizationssupportedbyallhepatologistsinBel-giumandtheBelgianAssociationfortheStudyoftheLiver(BASL) .Otherrelated groups active in the field include Belgian, Flemish and Walloon pa-tientplatforms,hospitalphysicians,thelivertransplantassociation,severalmedicalprofessionalassociations including theFlemishandWalloonas-sociationsof gastroenterology, drugprevention andHIVassociations, aswellasprisons .

Intermsofstrengthstowardsimprovedprevention,CHACandVHCcon-tributedtothereimbursementofmedicationobtainedformostpatients(ex-cept for children, patients with normalALT, relapsers and acute chronicHCVpatients);theyareactivelyinvolvedineffortstowardsthesettingupof a national prevention campaign and are continuously seeking to raisediseaseawarenessamongmedicalprofessionsandgovernments .Intermsofchallengestobefaced,despiteintenselobbyingeffortsCHACandVHChavenot succeededyet in securing a comprehensive informa-



tionandpreventionplanforviralhepatitisatnationallevel,providing,forexample,aframeworkforactionsatnationallevel,suchasthecollectionofincidenceandprevalencedata;andtheyarestillseekingtoobtaingov-ernmentalsupportandfunding,whilealsotryingtoincreasethenumberofcollaboratorsprovidinghelponadailybasis .

Based on presentations by Muriel Colinet and Marie-Fabienne Vanden Berghe,

CHAC/VHC, Belgium.

Highlights

BothCHACandVHCcontributedtomakingmedicationreim-bursableformostpatients .Theiractivitiesaremainlyfocusedongeneralawarenessraising,helpingpatients,andlobbyingforanationalpreventionandpatientcareplan .

Bulgaria: Bulgarian National Association for fighting Hepatitis (HEPASIST)

organization’s history, structure, funding, objectives and target audience HEPASISTwasfoundedatthebeginningof2005bysevenpeopleincludingpatientsandtheirrelatives,medicaldoctorsandmediaspecialists .Itsfunc-tional structure comprises a mixture of voluntary and paid staff members,including a voluntary honourable chairman with representative function, avoluntarygeneralsecretarywithmanagingandrepresentativefunctions,twopaidcoordinatorswithexecutivefunctions,apaidlawyer,3paidmedicalcon-sultants who are medical students providing online consultations, workingwithpatientsandansweringthetollfreeline,5voluntarymedicaladvisors,aswellasmembersoftheorganizationandadditionalvolunteers .

HEPASISTmembersdonotpayfeesandareparticipatingtosomeactivitiesonavoluntarybasis .FinancialsupportisobtainedfromrareprivatedonorsandfundraisingeventsbutmainlyfrompharmaceuticalcompaniesonamonthlybasisandforeachHEPASISTproject .Nogovernmentfundingisreceived .

Before 2005, hepatitis was considered as the disease of dirty hands andthere were no organized patient groups to support and stand for patientrightsinBulgaria .Thecivilsocietywasinitsinitialstageandpreventionmeasureswereexclusivelytakenbyhealthauthorities,suchastheimple-mentationofanewbornvaccinationprogramsince1992 .Therewerefewmedicalspecialistsinthecountry,onlypresentinbigcities,andinforma-tioninBulgarianwasscarceformosthepatitisissues .

TheroleandobjectivesofHEPASISTareprimarilyto:

• Inform society and raise awareness through public mediaevents, information campaigns, books, leaflets, etc.

• Promotepreventionby raisingvaccination awareness, ac-tively fight against anti-vaccine lobbyists, provide vaccines tovulnerableandriskgrouppopulationsandfacilitateac-cesstoscreeningandearlydiagnosticofviralhepatitis

• Defendpatient rightsby establishingcontactswithhealthinstitutions,providinglegalsupporttopatientsandinitiat-ingcivilsocietyactionstoensureaccesstotreatment

HEPASIST’stargetaudienceincludespatientswithviralhepatitisandtheirrelatives,>600HEPASISTmembersoverthecountry(mainlypatients/rela-tives),healthauthorities,healthcarespecialistsandthemedia .

HEPASISTistheonlyhepatitispatientorganizationinBulgaria,workinginclosecollaborationwithotherpatientgroupswithcommoninterests,suchas kidney insufficiency, haemodialysis, HIV, drug users and transplantation associations .

activities including prevention initiativesHEPASIST objectives are supported by corresponding activities, includ-ingdisseminationofinformationthroughawebsiteinBulgarianlanguage(www .hepasist .org)with interactiveoptions,onlineconsultations,patientforum,news,etc;atollfreelineprovidingpatientsupportthroughmedicalconsultations; print and online publication of information books and leaflets for prevention, treatment, etc .; awareness and advertising campaigns in-volvingmediapartnership,pressconferencesandmediaevents,interviews,televisionandradioshows .

In terms of activities focused on access to treatment, HEPASIST was themaininitiatorofallactionsstandingforpatientrightsintheformofprotests,civil and public claims against national institutions, roundtables and widemediacampaignswithinternationalsupportfromELPAanditsmembers .SuchactionsweretakenbyHEPASISTasthetreatmentprogramforchronicviral hepatitis was stopped due to lack of financing in March 2006, and suc-cessfullyresultedinthereopeningofthetreatmentprograminFebruary2007,withthepromisefromBulgarianhealthauthoritiestocollaboratewithHEPA-SISTasrepresentativeofviralhepatitispatientsinallfutureactivities .

In termsofpreventionactivities,HEPASISTinitiatedafundraisingcam-paign toprovidevaccines toaffectedpoor regionsofBulgariaasacon-sequence of rain floods in spring 2006. Several actions were taken such asatelevisionshowinpartnershipwiththenationaltelevision,aVIPBigBrothereditioninpartnershipwiththeBulgarian“BigBrother”,SMSfun-draising,andvaccinedonationswiththehelpofamanufacturer .Fundsraisedwereusedtoprovidevaccinestovulnerableandriskgroupsin flooded regions. Shortly after this campaign, HEPASIST, together with theUnitedNationsDevelopmentProgramme(UNDP)andavaccinemanu-facturer,providedvaccinationinmixedschoolsattendedbyBulgariansandgypsies,inordertohelpcontrolaHAVepidemicstartedinagypsyareaandspreadinginmanyotherregionsofthecountry .OtherpreventionactivitiesconductedbyHEPASISTwith the supportofvaccine manufacturers and the pharmaceutical industry have involvedawarenesscampaignssuchasIt is easy to get infected. It is also easy to be protectedwithadvertisinginmainprintmedia, tollfreevaccinationline,advertisementandextendedworkinghoursofvaccinationandspecializedmedical centres . Screening campaigns were also conducted during 2007whereby>3000individualsweretestedforHBVandHCVin5majorcitiesofBulgaria .

Strengths and challengesThreeyearsafteritsfoundationin2005HEPASISThasbecomeareferencesourceofinformationandsupportforhepatitispatientsandtheirrelativesinBulgaria,withwidemediacoverageandparticipationtoallitsactivities,withthesupportofELPAandimportantpharmaceuticalcompanies .Aspartofthecivilsociety,HEPASISThasestablisheditselfasanimportantpartnerininstitutionalpolicyrelatedtoviralhepatitis .

Withregards toHEPASISTstrengths in theareaofpreventionactivities,theassociationhadprovenitsabilitytoorganizeawarenessandinforma-

Viral Hepatitis

Meeting news

Highlights

HEPASISTisactivelyinvolvedinvaccinationcampaignsandvaccinedeliverytovulnerableandriskgrouppopulations .Inacountrywithahistoryofpolicyexclusivelydecidedatthelevelofpublicinstitutions,HEPASISTisrecognizedasapart-nerrepresentingcivilsocietyandpatientrightsininstitutionalpolicy .

Croatia: Croatian Association of Treated and Ill with Hepatitis (HEPATOS)

organization’s history, structure, funding, objectives and target audience HEPATOSwasfoundedin2000withanorganizationalstructurebasedonanassemblywhichis thesteeringbodyof theassociationcomprisingallactivememberswhereasanexecutiveboardisempoweredtotakedecisionsbetweentwoassemblymeetingsundersupervisionofasupervisoryboardandcounselledbyanadvisoryboard .

HEPATOS members are either regular, supporting or honorary and payno membership fees. Main financial support is obtained from government grantsandcontracts, foreigngovernmentsupport, thepharmaceutical in-dustry,aswellasfoundationandcorporategrants .

HEPATOS is a high profile non-governmental organization (NGO) with good relationships with its members and beneficiaries (>2000), recogni-tionandsupportfromthecommunityanddonors,thegovernmentandthemedia .HEPATOSisamemberof theCroatian Alliance of Hepatitis Pa-tient Associationfoundedin2004anditeffectivelycollaborateswiththeCroatianChron’sAssociationandotherNGOsdealingwithaddictionill-nesses,HIV,transplantation,etc .HEPATOSisrecognizedasacompetentand transparent organization, publicly speaking about hepatitis and con-ductingawarenesscampaigns,withclearlong-termaimsofhepatitispre-vention,improvedqualityoflifeofhepatitispatients,andincreasedpublicawareness .

HEPATOStargethepatitispatientsand their families,childrenandyouthandriskgroups(suchasdrugusers,warveteransandprisoners)reachedthroughmediaappearancesandbillboards,website(www .hepatos .hr),anddistributionofinformationandeducationalmaterialsinhealthandeduca-tionalinstitutions .

activities including prevention initiativesHEPATOSplaysamajorroleininformingthepublicthroughitswebsite,with>500appearancesinthemediawithin6years .Itisalsoactivelyin-volved in specific prevention initiatives, distributing information and edu-cationalmaterials(e .g .>50006thgradeelementaryschoolpupilsreceivinghepatitisbrochureseveryyear),aswellasconductingeducationallecturesathighschoolfor4consecutiveyears .Otheractivities includesupport theWHD(over2004-2008),counsellingpatientsandtheirfamiliesandofferingthemfreeinformative,psychologi-calandlegalhelpandadvice;tollfreephone;public,schoolandriskgrouplecturesandtribunes;advocacyandlobbying;promotinghealthbyfound-ingbranchesandnewassociations,alsooutsideCroatia .

Strengths and challengesHEPATOS defines its strengths as the values included in their vision: hardi-hood,enthusiasm,prudenceanddedication,activism,teamwork,opennessandskilfulness(competence) .Asmainachievements,HEPATOShascon-tributedtoamendmentsoflawregulationsintheinterestofpatients,suchastheimplementationofbestcarestandardsforallHCVinfectedpatientsregardlessoftheirgenotypeandmandatoryHBVvaccinationofnewborns;HEPATOSactivitieshavealsoledtothereductionofthepoolofpatientsinfectedwithHBVorHCV .Intermsofprevention,HEPATOShashelpedhepatitisbecomingaconver-sationtopicinpubliclife;ithascontributedtothedevelopmentofacoop-erationnetworkbetweendifferentsectorsandmadeinformationaccessibletochildrenandyouth,withtheaimofimprovedhealthcareandintegrationofhealthandsexualeducationatschool;ithasconductedcontinuouscam-paignsofpublicsensitizationanddestigmatizationofhepatitispatients;ithasorganizedfreescreeningtestactivities .

HEPATOSchallengesaheadincludeincreasedsocialservicesdeliveryandhealthcare through a future INFOHEP centre; enhanced cooperation be-tweenNGOsandpublicinstitutionsforriskgrouptreatment(e .g .prisons);furtherdevelopmentofcivilsocietyinCroatiaanddevelopmentofassist-anceinhealthsectorofcivilsocietyinWesternBalkancountries .

tioncampaignswith largepublicandmedia impact,withpositiveresultsobtainedfromcollaborationwithhealthauthorities .

HEPASIST’smainchallengeinthenearfutureistheadoptionofanationalhepatitisstrategybytheBulgarianMinistryofHealthin2008andthevotingof itsbudgetby theParliament in2009 .Thisstrategicplanshouldmainlyfocusonimprovedpreventionmeasuressuchasaccessibleinformationtothegeneralpopulationaswellasvulnerableandriskgroups,accesstofreetest-inganddiagnostics,vaccinationcampaignsforriskgroupsandeducationalprograms. However, limited financial resources from government for preven-tion activities, strong prejudices against vaccines, and difficult collaboration withhealthinstitutionsinBulgariaremainobstacleswhichneedtobeover-come .Inaddition,HEPASISTalsoconsidersthefollowingchallengestobefaced,suchasincreasingthenumberoftreatedpatients,improvingthelevelofearlydiagnosis,increasingfundingsourcesinordertoensureindependentfunctioningoftheorganizationandbettercollaborationwithinstitutionsforimprovementoftreatment,diagnosis,awarenessandprevention

Based on a presentation by Stanimir Hasurdjiev,

HEPASIST, Bulgaria.

HEPATOSobjectivestarget:• Preventionofviralhepatitis• Improvementofstatusandqualityofhepatitispatients’lives• Reorganizationofhealthcare• Protectionofreproductivehealthinchildrenandyouth• Helptohepatitispatients• Educationofriskgroups(children,youth,pregnantwomen,

warveterans,drugaddicts,prisoners,etc .)• Raisingawareness,destigmatizationofviralhepatitis• Promotionofrightsandinterestsofhepatitispatients• Promotionofcivilsocietyandvolunteering


Meeting news

Based on a presentation by Tatjana Reic, HEPATOS, Croatia.

OntheoccasionofaNationalRoundtablewhichistotakeplaceinApril2008aspartofWHD2008marking,HEPATOSintendstoemphasizetheneedforanationalprogramtobecompletedbytheendof2008 .

Highlights

HEPATOShascontributedtodemocratizationandcivilsoci-etydevelopmentinCroatiaandthepromotionofhumanrightsof hepatitis patients by decreasing healthcare discriminationandensuringprovisionandaccessibilityofnewsocial serv-ices,anddecreasingstigmatizationincommunity .HEPATOShasalsoactivelycontributedtoimplementationofmandatoryHBVvaccinationofnewbornsandschoolstudents .

Germany: Deutsche Leberhilfe

organization’s history, structure, funding, objectives and target audience LEBERHILFEisanorganizationforpatientssufferingfromallkindofliv-erdiseases,foundedin1987,andcurrentlycounting2,000memberswhilemaintainingcontactwith~17,000patientsinthepast10years .Itisorgan-izedaroundaboardofdirectorswithamajorityofpatientsmaintainedandincludingtwohepatologists(Prof .ClausNiederau,Prof .MichaelManns),acentral office employing a manager, counsellor/administrator, editor/coun-sellorand2voluntaryworkersand13voluntarylocalpatientadvisors .Anadditional scientific advisory board consists of 36 liver and viral hepatitis specialists (includingProf .Zeuzem,Prof .BlumandProf .Jilg) .LEBER-HILFE is financed through membership fees, private donations, support fromhealthinsurancesandpharmaceuticalcompanies,andlimitedgovern-mentfundingforindividualprojects .LEBERHILFEmainlytargetsliverpatients,theirfriendsandfamilies,gen-eralpractitionersandthegeneralpublicthroughphone,fax,email,websitesandpatientseminars .

LEBERHILFE’saimsare:• Helpingpatients• Informingthepublic,and• Cooperating with the scientific community

activities including prevention initiativesLEBERHILFEofferscounselling;itmaintainsseveralwebsites(www .leb-erhilfe .org, www .lebertest .de, www .hep-b .info, www .lebertag .org, www .welthepatitistag .info); it makes medical information accessible to all incooperation with specialists through information brochures in everydaylanguage,patientquarterlymaga-zines and medical publications,aswellasorganizationofpatientseminars; it provides contactdetails of medical doctors, clin-ics and self-help groups; and itrepresentspatient interests in thedevelopment ofGermanmedicalguidelines for HBV, HCV andgallstones .

In terms of activities specifically aiming at prevention, LEBERHILFE has organizedaschoolvaccinationchampionshipforschoolclassesreachingthehighestrateofHBVvaccinations;itparticipatesattheGermanLiverDay,informingthegeneralpublicaboutliverdiseasesandhowtopreventthem;itofferscounsellingtopatientfriends,partnersandrelativesontrans-missionroutes;and,importantly,LEBERHILFEhasinitiatedcooperationwithreligious leadersfromtheTurkishcommunity livinginGermanyinordertoinformTurkishcitizensabouttherisk,preventionandtreatmentofHBV .Asimilarapproachiscurrentlyunderconsiderationforotherpopula-tions,e .g .Russiancommunity .

LEBERHILFEworksincollaborationwithlocalpatientadvisorsandself-helpgroups,aswellasseveralpartnerpatientorganizationsforlivertrans-plant,viralhepatitis,hemochromatosis,cancer,etc .andotherinstitutions,suchastheGermanLiverFoundation,RobertKochInstitute,theGermanNetworkofCompetenceforviralhepatitis(Hep-Netresearchproject),theGermanSocietyofDigestiveandMetabolicDiseases(DGVS),theAssoci-ationofGermanIndependentGastroenterologists(BNG),andtheGermanAssociationfortheStudyoftheLiver(GASL) .

Strengths and challengesLEBERHILFEhasplayedamajorroleinthedisseminationofhighqualitybut easy-to-understand medical information. Unified and consistent mes-sageswhicharecheckedbyspecialistsasaccurateandup-to-date,aredis-seminated .Theorganizationmayhelpasamediatorbetweenpatientsandmedical doctors; it is efficient and structured with influence in decision and policy making and is the official organizer of important events, such as the GermanLiverDayorWHDinGermany .Italsohasmediacoverage,withregularradiobroadcastsandpressconferences .

However, LEBERHILFE has to face the lack of financial resources and governmental support linked to the absence of governmental preven-tionprograms .Theorganizationalsosuffers from liverdiseases stigmaoften reinforced by the press, such as dirtiness, alcohol, drugs and sexwhile liver patients are considered as doomed (no treatment for HCV)andhighly infectious .Stigmatizationcontributestomisconceptions(e .g .someindividualswouldnotshakehandswithahepatitispatientforfearofdiseasetransmissionwhiletheyareunawareofthedangersofpiercingor tattoo) and low profile lobbying in comparison to other diseases, such asHIVorcancer .

Highlights

LEBERHILFEhas initiatedcooperationwith religious lead-ersandcultural institutes inGermany, including translationsintodifferent languages, inorder toovercome languageandcultural barriers which reinforce problems with difficult to reachindividualsinvulnerablemigrantpopulations .LEBER-HILFEorganizespreventionactivitiessuchasHBVvaccina-tion championships for schools reaching the highest rate ofHBVvaccination .

Based on a presentation byAchim Kautz, Leberhilfe e. V., Germany.

Italy: EpaC

organization’s history, structure, funding, objectives and target audience EpaCwasfoundedbytwopatientsin1999inordertoprovideHCVpa-tientswithfreeinformationinItalianlanguage .

Viral Hepatitis

Meeting newsPage 1�

EpaChas a patient take care policy, involvingpersonalized and tailoredinformativeassistance,accompanyingthepatientandoverallaimingatim-provedqualityoflifethroughacourseofactionstakenforeachpatient:

EpaC’sobjectives:• Informthegeneralpopulation• Providetailoredcounsellingforpatientsandtheirfamilies• Educatefamilydoctors• Financeresearchprojects

EpaC has 2 offices, respectively in Milan and Rome, structured around a president,vice-president,fundraiserandwebsitemanager;5regionalcon-tact persons; 10 collaborators; 15 volunteers; a scientific committee; 2 law-yers;1nutritionistandotherprofessionals .EpaC’sdistinctivefeatureisthatitssteeringcommitteeisexclusivelycomposedofpatients(andtheirrela-tives)whilemedicaldoctorsstrictlyprovideexternalsupport .Fivesteeringcommitteememberstakedecisionsthreetimesayearwhileanassemblyof21membersvoteonceayearviaachatline .Fundingismainlyprovidedbymembersand7500supporters(43%),fol-lowedbycompanies(37%)andothersources(20%)andismainlyspentontheorganization’smission(74%)while26%isspentonstructure .

EpaC’stargetaudienceiscomposedofthegeneralpopulation(55million,50%reachedin10years)reachedviathemassmedia,newspapers,inter-net (www.epac.it), television spots and leaflets; patients (2 million, 40-60% reached)arereachedvianewsletter(30,000subscribers),informativebro-chures,videos,etc;familydoctors(55,000,20%reached)arereachedviatheinternetandprofessionalmanuals .EpaChasrecentlybeenrecognizedbyELPAaspremierpatientorganiza-tioninEuropeforExcellence in patient support .

activities including prevention initiativesEpaC’servicesandactivitiesarefocusedoninformationofthegeneralpop-ulation,mainlythrough5nationalawarenesscampaigns .

Intermsofinformationforpatientsandtheirfamilies,EpaCreferstosci-entific materials and guidelines developed by the Italian Association for theStudyof theLiveror tootherEuropeanandinternationalguidelines .YearlyrequestsforEpaCcounsellingbyphone,email,personalcontactorself-helpgroupshaverisenfrom980in1999to8970in2007 .Materialsarealsoproducedfortheeducationoffamilydoctors .EpaC supports research projects and has provided donations for severalinitiatives includingan investigationonmother tonewborn transmission(Padua), a database of transplanted patients (Turin), an epidemiologicaldatabaseofchildreninfectedwithHCV(Padua)andseveralpublicationsrelatingtopediatricandgynaecologicalguidelinesonHCV(Padua) .

EpaC has participated to several awareness raising activities including apetitiontotheItalianMinistryofHealth,alawproposal,ademonstrationinfrontoftheItalianParliamentandmeetingswithItalianpoliticiansactiveatEUlevel .

Themostimportantliver-relatedassociationinItalyisLiver-Pool,theItal-ianFederationofLiverPatientAssociationscountingmorethan15localassociationsasmembersandchairedbyahepatologist .

Strengths and challengesEpaCisthelargest,mostrespectedandrenownedassociationofliverpa-tientsinItaly,representingauniquelylargepublicresourceforhighqual-ityepidemiological informationcollectedonadailybasis .Also,EpaCisuniquelyfocusedonpatientqualityof lifebecausemembersarepatientsthemselvesandcanmovepeopletoaction .

Intermsofprevention,EpaChasprovidedevidenceoftheimportanceofhepatitisasatransmitteddisease,therebytryingtoforcetheformerItaliangovernmenttofacetheproblemandtheneedforagovernmentalapproachonpreventionplans .Tothisend,EpaCintendstocontinuetokeepmembersofthegovernmentsensitivetotherecognitionofhepatitisasarealandseri-oushealthproblem .

Based on a presentation byIvan Gardini, EpaC, Italy.

Education of Family doctors

Awareness Poster

Highlights

EpaCisauniqueassociationwhichis100%patient-led .Themainfocus is thepatients’qualityof life .Witharound9000requestsforcounsellingannuallytheyarethelargestliverpa-tientgroupinItaly .

Poland: HCV Patients Association PROMETEUSZE

organization’s history, structure, funding, objectives and target audience The Polish HCV patients association PROMETEUSZE was founded in2002inCracowbyagroupofHCVinfectedpatients .Currentlytheheadof-fice of the organization is in Walbrzych and has 5 regional branches. PRO-METEUSZE is a non-profit organization represented by its Management Board .Theassociationfunctionsonthebasisofknowledgeandexperienceofitsmemberswhoareallunpaidvolunteersadvisedbymedicaldoctorsandstaff fromepidemiological institutions .Currently theassociationhasover2,000members comprising70%HCV infectedpatients, 10%HBVinfectedpatientsand20%othervolunteers(suchasITspecialists,medicaldoctors,psychologists,nutritionists,etc .) .


Meeting news Page 1�

TheprimaryroleandobjectivesofPROMETEUSZEareto:• ReachtheHCV/HBVinfectedpatientsunawareoftheirin-

fection• Spreadinformationonviralhepatitis(HBVandHCV)• ProvidehealtheducationinordertorestrainHBV/HCVepi-

demics• ProvidedirecthelpforpeopleinfectedwithHBV/HCV• Offersupportduringthetimeofinfectionviasupportgroups

andpsychologicalhelp

Financialsupportismainlyobtainedfrompharmaceuticalcompanies(90%)andrareprivatedonations,aswellasnon-mandatorymembershipfees .

Before2002,therewasagenerallackofawarenessamongthePolishso-cietyaboutviralhepatitisandupto97%ofinfectedindividualsinPolandwereunawareoftheirstatus .Atthattime,accesstodiagnosisandantiviraltherapywaslimitedinthecountry .

TheaudiencetargetedbyPROMETEUSZEincludespatientsaffectedwithHCVorHBV,autoimmunehepatitis,hemochromatosis,steatorrhoeichepa-tosis,etc .Theorganizationmainlyreachesouttothispopulationthroughtheinternet,informationboardsinhospitalsorthemedia .

PROMETEUSZEworksinclosepartnershipwith“LifeafterLiverTrans-plantation”,anationalpatientorganizationdealingwithlivertransplanta-tions . Other related groups in Poland operating at regional level include“AgainsttheYellowRiver”,“Hepa-Help”,“WZW-SOS”andafewsmallerorganizationsactiveininfectiousdiseasehospitalsindifferentcities .

activities including prevention initiativesGeneralinformationalactivitiesareorganizedthroughinternetsites(www .prometeusze .pl and www .wzw .pl), chat, discussion groups, meetings, in-formational leaflets, national and local media, and cooperation with other patientorganizations .Education is provided through national actions and educational campaigns fi-nancedbypharmaceuticalcompanies,trainingforstaffofmedicalcareinstitu-tionsandeducationofyoungpeople .Intermsofeducationalactivities,PRO-METEUSZEalsoreliesoncooperationwiththePolishHCVExpertsGroup,agroupofrenownedscientistsanddoctorsspecializedininfectiousdiseases .

Activitieswithparticularfocusonpreventionconsistofdevelopingeduca-tional and informational programs and cooperation with epidemiologicalinstitutions,suchasreportingencounteredirregularitiesorcasesofbreak-ingsafetyrulesinmedicalcareinstitutions .

Strengths and challengesPROMETEUSZEhasevolvedtoaliverpatientassociationoperatingatna-tionallevelwithover2,000membersand20representatives,allvolunteerswilling tohelp indifferentactions .Theorganization is largelysupportedand respected by society, representatives of several medical professions,membersofparliament,andthemassmedia .

Withregardstostrengthstowardsimprovedprevention,PROMETEUSZEhas played an important role in increasing awareness of risks for HCV

transmission(80%ofcasesinfectedinmedicalcareinstitutions),reportingirregularitiestoadequatesupervisinginstitutions,supervisingthedetectionofnewHCVinfections,makingattemptstoimplement“TheNationalPro-gramAgainstHCV”,andinpopularizingHBVvaccinationinPoland .

PROMETEUSZE’s challenges for the near future remain the low detec-tionrateofHCVinfections,thelackofcorrectHBV/HCVstatistics,insuf-ficient interest of decision-makers about viral hepatitis (HBV/HCV), and insufficient knowledge in general public. In particular, the continuing low awareness in the field of HCV among staff of medical care institutions de-serves further attention and efforts from the organization. Limited financial resourcesfordiagnosisandtreatmentandthelackofananti-HCVprogramalsoremainimportantchallenges,suchasreducingtheaverage2-yearwait-inglist(range1-5years)foraccesstoantiviraltherapyofdiagnosedcases .The limited influence on how health and safety-at-work rules are respected isoneofthemajorobstaclestobeovercomeinordertoensurefurtherim-provementofprevention .

Highlights

PROMETEUSZEiswell-supportedandrespectedinPoland .Incollaborationwithsupervisinginstitutions,theorganizationhashadanimportantimpactinincreasingawarenessofviralhepatitis and focussing on risks of HCV transmission (80%wasnosocomial) .

Based on a presentation byIlona Sikorska, Prometeusze, Poland.

The Netherlands: National Hepatitis Centre (NHC)

organization’s history, structure, funding, objectives and target audienceThe National Hepatitis Centre (NHC) was founded as a knowledge andinformationcentrein1997bytheDutchliverpatientassociationandtheHaemophilia patient association, supported by liver specialists . NHC isa foundation without members and is organized around the NHC Boardwhichconsistsofrepresentativesfrompatientorganizations,hepatologistsandan independentchairman .TheNHCAdvisoryCommitteecomprisesscientistsfromdifferentareasincludingmedicalcare,occupationalhealth-care, public health and addiction care. The NHC Office employs 3 staff workersand3projectleaders .

NHC’s structural activities are financially supported by the Ministry of Health (delegated to the Centre of Infectious Disease prevention since2007), and by pharmaceutical companies. NHC’s projects receive financial supportfromdifferentnationalfunds,governmentalandothers(e .g .fundsfrominsurancecompanies),andfrompharmaceuticalcompanies .

The foundationwas initiatedbecause itwas felt that therewasa lackof information for patients and a low awareness among healthcareworkers .

TheNHCinformsthegeneralpublicthroughbrochures,awebsite(www .hepatitis .nl)andahelpline .Patientsandpatientorganizationsaresupport-edvia lobby and advocacy to government andpolicymakers, educationandsupportforpatientself-supportgroups,andindividualsupportforpa-tientsreceivingantiviraltherapy .Professionalsandhealthcareworkersarereachedby theNHC throughguidelines, educationand training, and theNHCwebsite .

Viral Hepatitis


UK: British Liver Trust (BLT)

organization’s history, structure, funding, objectives and target audience TheBritishLiverTrust(BLT)wasfoundedbyDameSheilaSherlockin1988asanationalUKcharityforallformsofliverdisease .TheBLTisorganized in threedepartments: the InformationandEducationdepart-ment deals with public relations, publications, marketing, the helplineandwebsite (www .britishlivertrust .org .uk); theFundraisingdepartmentis responsible for allmatters related to community, trust, statuses, andcorporatewhiletheOperationsdivisiontakescareofadministration,hu-man resources and finance. Currently, the BLT counts a total of 18 paid staffmembersand6volunteers,andinteractswithalargeteamofmedi-caladvisersand trustees .Ahelplinewas started in2003and theTrustwebsitewasre-launchedinAugust2007 .Financingisobtainedmainlyfromtrusts(40%)andindividualdonations(21%)butalsofromstatutory(17%),corporate(14%)andcommunity(5%)support .

ThelastdecadehasseenawiderrecognitionofliverdiseaseinUKsocietyandalcohol,obesityandHCVhavebeendescribedbytheUKChiefMedi-cal Officer as a ‘potential triple hit’.

Withrespecttotargetaudience,thetrustestablishedawidereachindiffer-entsectorsofsociety,includingpeoplewhodrinkalcoholathazardousandharmfullevelsorpeoplewhomaybeoverweightandmoresusceptibleto

TheroleandobjectivesoftheNHCareto:• Improve the coordination and cooperation of activities on

hepatitis• Documentanddisseminatetheknowledge,expertiseandex-

perience• Advance education and information on (the prevention of)

hepatitis• Supportpatientswithhepatitis• Offerexpertisetohealthcareworkersandothers• Offerfacilitiestoassociations,organizationsandfoundations

withsimilarobjectives• Identifygapsinknowledgeandexpertiseregardinghepatitis

OtherrelatedgroupsinteractingwithNHCinTheNetherlandsmainlyin-cludepatientorganizations(self-supportgroups) .TheNHCalsocollabo-rateswith theNational Institute forDiseasePrevention (NIGZ), itsgov-ernmentalpartnerinHCVcampaigns .Furthermore,NHCcooperateswith“Mainline”,anindependentorganizationprovidingsupportforpatientswithdrugrelatedhepatitis,whichisalsoNHC’spartnerinHCVcampaign .

activities including prevention initiativesNHC is mainly active in disseminating information and advice (throughwebsite,brochures,helplineandelectronicnewsletter),andprovidingtrain-ing and education for health professionals including GPs, nurses, publichealthcareworkers,andoccupationalhealthcareprofessionals .NHCac-tivitiesarealwaysevidence-based,takingintoaccountnationalandinterna-tionalguidelinesaswellasexpertopinions .Inaddition,NHCalsopartici-patestoseveralprojects,suchasprovidingeducationduringtheNationalhepatitisweek, raisingawareness through theNationalHepatitisCcam-paignand lobbying throughorganizationof symposia forpolicymakers .OtherprojectsarerelatedtoprovidingcareforchronicHBVpatients(ShortChainproject),bloodexposureaccidents,HBVandpregnancy,andsafetysystemstopreventneedlestickaccidents .

Withregardstopreventionactivities,theNHCislobbyingforroutineHBVvaccinationofallnewbornsand freevaccinationprograms forgroupsatrisk, including patients with chronic liver disease, people with a mentalhandicap,andoccupationalriskgroups .Inaddition,NHChastakeninitia-tivesaimedatreductionofoccupationalexposurebyissuingneedlestickaccident guidelines, providing a specific educational and training program, andbystudyingtheintroductionofsafetysystemsinhealthcare .

Strengths and challengesNHCisanindependentfoundation,accessibleforeveryone,workingfromapatientperspective,withevidence-basedactivities .Thefoundationcre-

atesameetingplaceformedical,social,publichealthandpoliticalworkingfields on hepatitis.

Intermsofchallengestobefaced,despiteimportanteffortsinthelastyears,awarenessonhepatitis still needs tobe further increased inTheNether-lands .Theinterestofthegeneralpublicforhepatitisneedstobebroughttothe same level as it is, e.g. for HIV or avian flu. Work is still to be done in convincingthegovernmentandpoliticiansthathepatitisisaseverehealthissue . BecauseThe Netherlands is a country of low endemicity, generalpractitionersandotherhealthcareworkershavelessexperiencewithhepa-titis,thediseaseisoftenperceivedas“ahealthproblemfromelsewhere”andthereisimportantcompetitionwithotherhealthcareproblemsintermsofresourceallocation .FutureactivitieswillneedtotakeintoaccountthatthenumberofhepatitispatientsisincreasingthroughimmigrationandthatmanyinfectedindividualsdonotspeakDutch .

Furthermore, public health officers and first line healthcare staff should be motivated to perform active detection of hepatitis, develop specific, cultur-ally tailored, detection programs for vulnerable ethnic groups and coop-erate inprovidingincreasedaccess to treatment .Detectionandtreatmentofhepatitispatientsshouldbeseenasprimarypreventionofsevereliverdiseaseandassecondarypreventionofdiseasespread .ImplementationofanationalHBVvaccinationprogramremainsanimpor-tantchallengetowardsimprovedpreventioninTheNetherlands .

Highlights

OneuniqueaspectoftheNHCisthatitisagovernmentsup-portedfoundationthatalsorepresentspatients .Itsactivitiesareevidence-based,conform(inter)nationalguidelinesandexpertopinion .

Based on a presentation byPaula Van Leeuwen, NHC, The Netherlands.



fatty liver,highriskgroupsforviralhepatitis,andpeoplewithhereditaryorgeneticconditionsrelating to the liver .Currently the trust issupportedbynearly20pharmaceuticalcompaniesandinteractswith7,000stakehold-ers,includinghealthcareprofessionals,healthcareworkers,patients,carers,families and occupational health officers. The success of the trust is reflected in its 2007 figures: over 1 million people visited the trust’s website, publica-tionsalesincreasedby128%andcallstothehelplineincreasedby39% .

BLT’smission:

Reduce the incidenceof liverdiseaseandhelpeveryoneaf-fectedbyliverdisease,throughtheprovisionofinformation,supportandresearch .Workingto:• Supportpeoplewithallkindsofliverdisease• Improveknowledgeandunderstandingoftheliverandre-

latedhealthissues• Encourageandfundresearchintonewtreatment• Lobbyforbetterservices

Otherpatientgroupsactive in theUKandof interest to theBLTare the“Children’sLiverDiseaseFoundation”,“C-Level”(avoluntaryorganiza-tionoffering support to those affectedbyHCV), “LiverTransplantSup-port”,“Mainliners” (acharityworkingacrossblood-borneviruses,drugsandsexualhealth),“ObstetricCholestasisSupport”, the“PrimaryBiliaryCirrhosis(PBC)Foundation”,the“PrimarySclerosingCholangitis(PSC)Trust”,the“HepatitisCTrust”andthe“’HepatitisBFoundation” .

activities including prevention initiativesGeneralservicesprovidedbytheBLTincludepatientinformation(23pa-tient information publications) and supporting people and their familiesthroughthewholecourseofliverdiseasefromprevention,diagnosis,treat-ment,andwherenecessary,copingwithsymptomsandmanagingcompli-cationsof cirrhosis .Other general activities relate to research, lobbying,publicrelationsandpresscoverage .

Activities with particular focus on prevention include providing advicethrough helpline and online support and through publications . The BLTalso lobbies for better public protection through vaccination and pub-licawarenesscampaigns,and initiatedaprojectusinggraphic images toencouragethoseincustodytochangetheirbehaviorforbetterprotectionagainstblood-borneviruses .Importantly,thetrustprovidesadviceinotherlanguagestorespondtoneedsofmigrantsatriskofviralhepatitisanditscomplications .

BLThascontributedtoseveralsuccessfulpreventionactivities .TogetherwithstakeholdersacampaignwaslaunchedonHBVawarenessandpromotionofvaccination(BAwareinitiative)andanothercampaignonHCVawarenessandscreeningwassetup(FaCeIt)incollaborationwiththegovernment .TheBLT supports activities of theAll Party Parliamentary Hepatology Group(APPHG),iskeystakeholderintheNationalInstituteforHealthandClini-calExcellence(NICE)anddoesotherstakeholderworkonHCVforWorldHepatitisDayandParliamentaryGroup .Furthermore,aBBCRadio4pro-gramonpreventingliverdiseasewasorganizedandworkwasdonetoraiseawarenessonhazardsofalcoholandeaseofliverdamage .Finally,plansfornewpreventionpublicationsarebeingdevelopedforthefuture .

Strengths and challengesTheBLTisanationalorganizationfocusingonallformsofliverdisease,withstronglinkstohepatologistsandwideservicesincludingpatientsup-port groups, helpline, publications and a website with online patient fo-rum .The trust is respected,well-knownandregularlyquoted innationalpress(television,printandonline) .TheBLTfeelsthatthehighmediaandpolitical interest inalcohol-relateddiseasescouldbeusedtobroadentheapproach and to raise the profile of viral hepatitis. The trust is also part ofthecoalitionofhealthorganizationsregardingalcohol-relateddiseases(AlcoholHealthAlliance)andsubmitsreviewofliverservicestotheDe-partmentofHealth .

Despitethesesuccesses,importantchallengesremainforthenearfuture .IntheUK,theimpactofliverdiseasecontinuestoincrease,asopposedtodecreasingmortalityduetorespiratorydiseases,heartdisease,strokeandcancer .Therestillisnogovernmentactionplantocounterviralhepatitis .ThehighratesofinwardmigrationtotheUKfromareaswithhighpreva-lenceofviralhepatitisrequireadequatepolicychangestoadapttothissitu-ation .PublicawarenessandeducationabouttheliverremainslowintheUKandconfusionexistsbetweendifferenttypesofviralhepatitis:HAVvaccination rates amongst travellers are high but often result in a falsesenseofprotectionagainstHBVandHCV .Also,liverdiseaseisstillper-ceivedasstigmatizing .ThereappeartobeimportantdelaysandbarrierstoavailabilityofantiviraltreatmentthroughlongNICEappraisalprocedures .Furthermore,thepatientgroupsectorintheUKiscrowdedwithnumer-oussmall,non-cohesivegroupsandwithlivercharitiesfacingcompetition .Ingeneral,fundraisingremainsachallengewithcorporates,governmentand individuals. Media attention can also have a negative influence, for instancelinkingliverdiseasetoalcoholusetohaveeasieraccesstomediacoverage but it can also confirm stigmatizing stereotypes.

TheBLTisfacingseveralchallengestoimproveprevention .Responsibili-tiesforpreventionaresegmented;forexamplethepreventionpolicyforinjectingdrugusers,forviralhepatitis,andforyouthisnowsplitbetweenthree government departments and there is no joint reflection on how to improvepolicy .OneofthemajorchallengesremainsthelackofuniversalHBVvaccination in theUK .Primarycarephysiciansreceiveno incen-tiveorarenotcoveredforprovidingpreventionservices,includingHBVvaccination,whichisastrongdisincentiveforUKpatientswhohavetopaytogetimmunized .TheawarenessofriskfactorsforHBVandHCVtransmission remains lowand the lackof approved statistics onpreva-lence of liver disease emphasizes the need for official prevalence studies. IntheUK,HBVdidnotreceivethesameattentionasHCVdidduringthelastdecade,resultinginsomediscrepanciesbetweenpreventionpoliciesoneitherdisease, for example theFaCe ItGovernment campaignonlycoveredHCV .

Based on a presentation bySarah Matthews, BLT, UK.

Highlights

BLT is one of the oldest liver patient organizations in theUK,witha lotofexperience inorganizingsuccessfulpre-ventionactivities togetherwithgovernments,media,hepa-tologists, as well as patients, to complete their mission .Majorchallengesstillremain,amongthemthecompetitiveenvironmentoflivercharitiesintheUK,duetothecrowdedpatientgroupsector .

Viral Hepatitis


US: The Hepatitis Foundation International (HFI)organization’s history, structure, funding, objectives and target audience TheHepatitisFoundationInternational(HFI)wasfoundedNovember1994in Cedar Grove, New Jersey, US .The foundation is organized around aBoardofDirectorswith14membersandtheMedicalAdvisoryBoardwith15members .PaidstaffiscomposedoftheChairandChiefExecutiveOf-ficer, the Chief Operations Officer, the executive director, an office man-ager,twoadministrativeassistantsandapart-timewebmaster .

Atthetimeofitsfoundation,theHFIwasconceivedasanorganizationthatwouldserveastheleaderinpromotingliverwellnessasthekeytoprimarypreventionofviralhepatitis .

HFI’sobjectivesareto:• Educate the public, patients, and professionals about pre-

vention,diagnosisandtreatmentofviralhepatitis• Preventviralhepatitisandpromotehealthylifestyles• Serveasadvocatesforpatientsandthemedicalcommunity

worldwide• Support research into prevention, treatment and cures for

viralhepatitis

Financialsupportisobtainedmainlyfromprivatedonorsandoccasionallyfromfoundationsandgovernmentalgrantsorothersources(saleofDVDs,curricula,andprintmaterials) .Pharmaceuticalpartnersprovidefundingforeducationalprograms .

TheHFI’stargetaudienceincludespre-kindergartenstaffmembers,teach-ers, college/ university faculty and students, patients, healthcare profes-sionals, counsellors and social workers, juvenile justice workers, justicedepartmentpersonnelandthegeneralpublic .Theseareapproachedthroughafreequarterlynewsletter(HepatitisAlert,readershipof10,000individu-als), the HFI website (www.hepatitisfoundation.org; www.hepfi.org ) and a toll-freeinformationandreferralhotline .

Thereareover400relatedsupportgroupsacross theUS .HFIreferspa-tients to these groups via the information hotline and provides supportgroupswithliterature,DVDs,andnewsletters .

activities including prevention initiativesTheHFIisworkingonpreventionbyprovidingtrainingforeducatorsandhealthcareworkers,brochures,informationsheets,andpostersforsaletothepublicandhealthcareagencies .DVDspromotingliverwellnessandpreven-tionofblood-bornepatho-gensandsubstanceabusearealsoproducedforusebyschools,clinics,healthdepartments, prisonsand support groups . Thefoundation developedan original training ap-proach: “Foundation forDecisionMaking”™(seeillustration) .

Strengths and challengesWithregardstoHFI’sstrengthsintheareaofpreventionactivities,thefoun-dationprovidesthemissingelementinprimarypreventionbyfocusingonliverwellness .The“FoundationforDecisionMaking”™trainingapproachuseshumorandreal-lifeexamplessopeoplecanrelatetoandrememberthemessages .TheHFIprovidesquickandeasytoolsthatareeasytouseforeducators,healthcareprofessionalsandcommunityleaders .

HFI’s main challenge for the future relates to the identification of new sourcesoffundingforexpandedawarenesscampaignsandotherprojects,includingprovidingall teacherswitheffective skills andage-appropriatematerialsforpromotingprimarypreventionandliverhealtheducationinallschools. Also, support from elected officials for new legislation needs to be gainedinordertostrengtheneducation,emphasizeprevention,andfurthersupporthealthylifestyles .

Based on a presentation byThelma King Thiel, HFI, USA.

Highlights

The HFI is promoting liver wellness and healthier lifestylebehavior as the key to primary prevention of viral hepatitisandavoiding liver-damagingactivitieswhereasotherpatientgroupsfocusonthedisease .Thefoundationismainlyfocus-ingoneducationandthereforecreatesoriginaltrainingmateri-als,easytouseforeducatorsandhealthcareworkers,tocreateawarenessandpromoteliverwellness .

Advocating for immigrant communities at risk: Asian Liver Centre (ALC)

organization’s history, structure, funding, objectives and target audience The Asian Liver Center (ALC) was founded in 1996 as a non-profit or-ganizationestablishedtoaddressthedisproportionatelyhighincidenceofchronicHBVinfectionandlivercancerinAsiansandAsianAmericans .Theorganizationisfundedbydonations,foundationsandUSfederalgrants .

ALC’sprimarygoal:EradicateHBVandreducetheincidenceandmortalityofhepatocellularcarcinomaworldwide .3-prongedapproach:• Livercancerresearch(cancergenomics,biomarkers,stemcells)• Preventionandcommunityhealthresearch• Outreach,education,training,andadvocacy

ALC specifically targets the Asian and Pacific Islander (API) American population, the fastest growingethnicpopulation in theUnitedStates intermsofpercentagegrowth,whichincreasedfrom3 .7millionin1980to15 .2millionin2006 .Forinstance,oneoutof8CaliforniansisAPI .About66%ofAPIarebornoutsidetheUS .Ofthese,75%arebornincountrieswithchronicHBVprevalenceratesof8-15% .AmongAmericanAPI,liverdiseaseisthesecondcauseofcancerdeath,afterlungandbronchuscan-



cer .ThepotentialpoolofAPIhavingchronicHBVisestimatedtobeover860,000individuals .Forexample,in2006inSanFrancisco,84 .1%ofper-sonswithchronicHBVinfectionwereAPI,with74%ofthemborninanHBVendemiccountry .ThemostimportantriskfactorsforchronicHBVinSanFranciscoarebeingborninanendemiccountry(74%)andMSM,manhavingsexwithmen(12%) .Asmanyas twooutof threeAPIwhotestedpositive for chronicHBV infectionwerenot awareof their status[1,2] .AlmosthalfofAPIwithchronicHBVinfectionwerediagnosedattheoccasionofascreeningtest(i .e .asymptomatic)whilelessthan10%arediagnosedbecauseofabnormalliverenzymes .

activities including prevention initiativesALC works in partnership with CDC and the Office of Minority Health (OMH)oftheUSDepartmentofHealthtoaddressgapsincurrentHBVimmunization, screening and treatment strategies, as well as gaps infederal guidelines . For instance, two HBV measures that could becomenational healthcare standards were introduced and endorsed by the USNationalQualityForum(NQF)in2007-08,namelyforeignbornpersonsfromendemiccountriesshouldberoutinelyscreenedforHBVandnew-bornstomotherswithchronicHBVshouldreceivevaccineandhepatitisB immunoglobulin (HBIG)within12hours .ALCalsoadvocates foranevidence-basednational reporton thepreventionandcontrolof chronicviralhepatitis(HBVandHCV)bytheInstituteofMedicineoftheNationalAcademies .

ALCisactivelyinvolvedinresearchtoprovidepolicymakerswithevi-dence-based data from studies published in the scientific literature. For example,anALCstudyshowedthatitiscosteffectivetoscreenallAsianAmericansforchronicHBVinfection[3] .TheseALCstudieslendsupporttothesubsequentrecommendationsissuedbytheCDCtoexpandroutineHBVscreening toall foreignbornpersons in theUSfromregionswithchronicHBVprevalencerateoftwopercentorgreaterandunvaccinatedUSbornpersonswhosepar-ents were born in regionswith high HBV endemic-ity[4] .Resourcestoaddressgapsincommunityandphy-sician education are offeredforfree,suchasbrochuresindifferent languages for dif-ferent countries, physician’sguidelines on HBV (includ-ingonepostedontheCDC’swebsite), a website (http://liver .stanford .edu) and a tollfreehotline .

ALC also collaborated with legislators in creating the first Hepatitis B Bill thatwasintroducedinDecember2005tomembersoftheUSCongressandinJune2006totheUSSenatetoestablishandimplementacomprehensiveHBVprevention,education,researchandmedicaltreatmentprogramtore-ducelivercirrhosisandcancerincidence,andimprovelivercancersurvivalcausedbychronicHBVinfection .

ALCplaysamajorroleinincreasingawarenessinthepublicandhealth-carecommunityabouttheprevalenceofHBVintheAPIcommunity,andtherelationbetweenHBVandlivercancer .Tothisend,theJade ribbon Campaign was launched in May 2001 to prevent and fight HBV and liver cancer,urgingpeopletobetested,vaccinated,treatedandscreenedforlivercancer .

Another initiative is the LIVERight run/walk event organized to raiseawareness about HBV and liver cancer in theAPI community . In 2007,ALCanditspartnersexpandedtheJadeRibbonCampaigninto the larg-esthepatitisBcampaigninNorthAmerica:theSanFranciscoHepBFreeCampaign .Atwo-yearcampaign thatcalls forallAPI toget tested,vac-cinatedortreatedforhepatitisB(www .sfhepbfree .org) .

Sinceitsfoundingin1996,ALChasbeendedicatedtoservingtheAsiancommunitythroughavarietyofoutreachprogramsandregularlypartici-patesincommunityeventsprovidingfreescreeningsandlow-costvaccina-tions,hostingeducationalboothsandgames,speakingtohealthcareprovid-ersanddevelopingworkshops tospreadawarenessaboutHBVandlivercancer .TheorganizationbroughtthelargestfreeHBVcatch-upvaccinationandeducationprogramtoChina .

ALCcloselyworkstogetherwiththemediatoincreaseHBVandlivercan-cerawareness,throughinternationalnews,nationalnewspapersandmaga-zines, radio and television interviews, as well as documentaries and theorganizationhasalonglistofactivelyparticipatingpartners .

ChallengesALC’scontinuingchallengeforthefutureistoincreaseawarenessamongproviders, the community, and legislators about HBV prevalence, benefits ofscreening .ThepoorknowledgelevelregardingHBVprevention,trans-mission,symptomsandriskoflivercanceralsoneedstobeaddressed .

Highlights

SimilarlytotheHIVRedRibbon,ALClaunchedtheJadeRib-boncampaigntoraiseawarenessinthepublicandhealthcarecommunityabouttheprevalenceofHBVintheAPIcommu-nity,and the relationbetweenHBVand livercancer .ALC’sactivities have international outreach, e .g . several initiativesorganizedinChina .

references[1] Characteristics of person with chronic hepatitis B. San Francisco,

California, 2006. MMWR Morb Mortal Wkly Rep 2007 May 11; 56 (18): 446-8

[2] Lin SY, Chang ET, So SK. Why we should routinely screen Asian American adults for hepatitis B: a cross-sectional study of Asians in California. Hepatology 46:1034-1040, 2007

[3] Hutton DW, Tan D, So SK, Brandeau ML. Cost effectiveness of hepati-tis B screening and vaccination among adult Asian and Pacific Island-ers in the United States. Ann Intern Med 147:460-469, 2007

[4] Recommendations for Identification and Public Health Management of Persons with Chronic Hepatitis B Virus Infection. MMWR Morb Mortal Wkly Rep 2008, Sept 19, 57(RR-8): 1-16 available at http://www.cdc.gov/mmwr/PDF/rr/rr5708.pdf. accessed on 9 October 2008.

Based on a presentation bySamuel So, ALC, CA, USA.

Viral Hepatitis


Breakout sessions: strengths and opportunities versus weaknesses and obstacles

Duringthebreakoutsessions,participatingpatientorganizationsweregiv-entheopportunitytoidentifytheirstrengthsandweaknesses,togetherwithchallengesandthresholdsregardingtheirroleandimpactonpreventionandcontrolofviralhepatitis .

Weaknesses and obstaclesLimitedorlackingfundingandgovernmentalsupportisanimportantweak-nessfacedbymanypatientorganizationsthathavetorelyonvoluntarywork-ers,leadingtounderstaffedteamscompetingforscarceresources .Asaresult,thereisalackofclearinghousefunction,preventingpatientorgan-izations to benefit from increased awareness and mutual recognition which would foster communication between them and improve interaction withstakeholders,e .g .healthinsurancebodiesandgovernments .Instead,overlap-pingintereststendtobeofacompetitivenature .Patient groups sometimes perceive themselves as “amateur” and could benefit from training, particularly in the field of communication, public relations and fundraising,howevertheyareoftennotawareoftrainingopportunitiesandhowtoaccessthem .Also,self-evaluationoftheiractivitieswouldhelpim-provetheirperformance .Vaguenessabouttheroleofpharmaceuticalindustrycancausedoubtandsuspicionontheroleandactivitiesofsomegroups .Asacorrelatedissue,patientgroupsarenotrepresentedintechnicalagenciesandarenotinvolvedintechnicalactivitiesalthoughtheywouldhavealotofexperiencetooffer .Inthatrespect,thepossibilityofinvitinganELPAmem-bertoparticipateinfutureVHPBactivitieswasraised .Stigmatizationofhepatitispatientsalsoremainsanobstacle,withprejudicessuchasdirty diseases, incurableandHCV-positive people need to be isolated,impedingtheworkofpatientrepresentatives .Togetherwiththeneedtocoun-ter stigmatization, there is also a lack of high profile lobby that could bring attentiontoviralhepatitistothesamelevelasitisforHIV/AIDSorcancer .Language and cultural differences were also identified as potential barriers, forinstancewheninformationisavailableinasinglelanguage .Variouspa-tientorganizationshaveasegmentedworkportfolio .Whiletargetingsmall,well-defined populations is limiting their global impact, there is a clear need to reach out to these specific, vulnerable populations.There is a need for stronger and more vocal positive messages to counternegative propaganda communicated by anti-vaccination lobbyists, respon-sible for mis- or dis-information, sometimes reinforced by negative mediacoverage .Atnationallevel,somepatientorganizationsreportedthelackofacompre-hensivepreventionprogramorthelackofimplementationofgovernmentalplans .SomecountriesalsoreportedtheabsenceofanHBVvaccinationpro-gram. Such deficits are generally coupled with a lack of solid epidemiological dataonHBVandHCVinfectionanddisease .MisconceptionsaboutroutesoftransmissionofHBVarestillprevailingandahighproportionofHCV-posi-tiveindividualsareunawareoftheirstatusduetolimitedfundingavailablefordiagnosisandtreatment .There isanoverall lackofawarenessaboutviralhepatitisamong thegen-eral population. Particularly, the insufficient knowledge about HBV and HCV amonghealthworkers leads tobreachesof infectioncontrol .There is alsolittleevidenceofthecost-effectivenessofscreeningandtreatmentsandtheneed for screening and practice guidelines was identified.The interest level for viral hepatitis among decision makers is low, whichcalls for further advocacy. Collaboration with official health institutions is sometimes difficult, especially in countries where public institutions have only recently opened the dialogue with entities representing civil society,such as patient groups . Cases were mentioned of resistance on the part ofgovernmentalinstitutions,resentingsuccessesandpopularityofsmallpatientgroups. Politics can negatively influence their work, for instance in the case of

changesingovernment,orwithrespecttocollaborativeeffortsamongpatientorganizations .

Strengths and OpportunitiesPatient organizations are perceived as influential by numerous stakehold-ersandaresupported,moretrusted,andmorerespectedbythemediathanotherorganizations .Theyhaveaprovenabilitytogettheirmessagesacross,which they disseminate through various means, mainly websites (includ-ingonlinediscussionforaandchatlines),newslettersandbrochures .Patientorganizationsarewell-usedpublicresourcesofinformation,providingma-terialswhichareconsideredaseasy tounderstand,accurate,credibleandunified, while messages and language are adapted depending on the target patientgroups .Theirmultilingualismisseenasanadvantageandisparticu-larly beneficial for some hard to reach groups, such as immigrants and vul-nerablepopulations .Asanexampleofaddedvaluewithrespecttoculturalsensitivity,theycanreachouttocertainreligiousorculturalorganizationswithlessriskofstigmatizationthaninthecaseofspecialistsapproachingvulnerablepopulations .Patient organizations have the ability to network more easily than othergroupsbecausetheyfacefewerbureaucraticbarriers .Theyrepresentafreeorrelativelyinexpensiveresource,whichisimportanttopersuadegovernments:they are able “to do the governments’ job cheaper” and they can fill gaps in governments’ health programs, as well as auditing and monitoring variousactivitiesrelatedtopolicy,guidelines,treatmentprotocols,etc .Qualitiesofpatientgroupsincludeuniqueness,legitimacy,trust,dedication,energyandpassion,withacommonpurposeofimprovingservicesandcarefortheindividual,aswellasforthepopulationatlarge .Patientorganizationsareable tooperateatnationalandinternational level;someareumbrellaorganizations,coveringseveralgroupswithcommonaims .Theyformpartnershipsandmanyhaveprofessionalteamsandstronglinkswithprofessionals,providingthemwitheasyaccesstospecialists .Theworkofpatientorganizationsisbroadlysupportedbyprofessionalbodiesandasso-ciations,aswellasmembersofparliamentallowingthemtoprovideinputintopolicyanddecision-makingprocesseswhileofferinganeutral status .Theycontributetothedevelopmentofcivilsocietyandhavetheabilitytoreportbreachesofgoodpractice,inparticularthoseincreasingHCVtransmission .Patient organizations can also favour relationships between doctor and pa-tientsincetheyhavetheuniqueabilitytoprovidesocialcareforindividualsdiagnosedwithviralhepatitis,whilephysicianscanoftenoffernoorlimitedsupportduetolackoftime .There is an opportunity for patient groups to use their influence and experience topersuadegovernmentsthattherearegoodeconomicreasonstointroduceinterventionslikescreeningorreinforceexistingmeasureslikeimplementinguniversalHBVvaccination .Thereisaconsiderablepotentialforgreaterinvolvementofpatientgroupsinprimarypreventionofviralhepatitis,datacollectionandamoreconsistentapproachtothedevelopmentofguidelinesandsynergisticcollaborationwithspecialists .Patientorganizationsarealsoseenasanopportunitytoimprovethequalityoflifethroughqualityofcare,withequityofaccesstocare,primarypreventionandtreatment .There is an opportunity to raise the profile of viral hepatitis, for instance by broadeningtheapproach,linkinghepatitistocancercampaignsorhookingtoalcohol-relateddiseases .Theneedwasalsoexpressedforaglobalviralhepa-titisinitiative,ensuringsustainability,consistencyandcoordinatedaction .

Based on feedback from breakout sessions andD. FitzSimons’ presentation, WHO.



Conclusions

Patient organizations’ structure, objectives, target audience and activities

The structure andorganizationofpatient organizations range fromsmallgroupsofvolunteerswithnoneorafewpaidprofessionalstofullmembershiporganizationswithassemblies,boards,directors,ad-visors and trustees .Somecharge theirmemberswith feeswhereasothersaretraditionalassociations .Someorganizationshaveformal,traditionaldecision-makingprocesses,othersmakeuseofinnovativee-governancesuchaselectronicforaorganizedtoreachconsensuses .Theyarefundedviaavarietyofsources,withlargelyvaryingpro-portions:fees,fund-raisingactivities,privatedonations,grants,gov-ernmentsupportorpharmaceuticalindustrysponsoring .Inordertomaintaintheirindependence,somepatientorganizationslimitphar-maceuticalsupport .

Patient organizations’ objectives vary from focus on patient welfareandsupport,sometimesforoneconditiononly,tobroadactivitiescov-eringallformsofliverdisease,includingnon-viralconditionsandim-munization in general . Some organizations centre their activities onprevention initiatives while others play a major role in counselling .Mostofthemareinvolvedininformationdissemination,includinged-ucationalmaterialsandallaimatincreasingpublicawareness .Manyareinvolvedinadvocacyandlobbyingactivities,othersarecoordinat-ingothergroupsandsomeareactivelyinvolvedinresearch .

Patient organizations target a broad audience ranging from patientsandindividualsatrisktothegeneralpopulation,andnationalandpro-fessionalbodies .Medicalandprofessionalinformationisspreadandawarenessisraised,oftenthroughconferences,amonggeneralpracti-tioners andhealthcareworkers includingpreventionofoccupationalexposuretoblood-borneviruses .Someorganizationsareactiveinis-suingguidelinesforthemedicalprofessionandpublic,othersorganizecampaignsfocusingontheneedforscreening .

Patientorganizationsprovidearangeofservicesandactivities,includ-ing networking, online and chat fora; informational and educationalmaterials (through printed or electronic media); toll-free telephonehelplines;campaignsandtalksinschools .Someorganizeconferencesandcounsellingcentresor conduct surveysonperceptionof illness .ManyofthemareactiveinpublicrelationscampaignsandparticipateinWorldHepatitisDayornationalliverdays .Advocacyandlobbyingare key activities to influence policy through decision makers in order toensureimplementationoflegislativeproposalsandtoadvocateforaccuratepreventionstrategies,vaccinedevelopment,vaccinationpro-gramsandtheirfunding .Somepatientorganizationsarealsoactivelyinvolvedinvaccinedeliverycampaigns .

Strengths and opportunities versus weaknesses and challenges Successesachievedbypatientorganizationstodatearemainlyattrib-utable to their strengths as influential and reliable resources to com-municate and interact with a broad range of stakeholders; their keyroleasrepresentativesofcivilsocietyandtheirdirectcontributionto

improvedqualityoflifeofinfectedindividuals .Suchstrengthscreateopportunitiesfortheseorganizationstobemoreinvolvedinprimaryprevention,datacollection,developmentofguidelines(e .g .screeningprograms)andsynergisticcollaborationwithgovernmentandspecial-ists in order to raise the profile of viral hepatitis, counter anti-vaccina-tionpropagandaandpromoteinitiativesatgloballevel .

However, limited or lack of funding and governmental support andrelatedcompetinginterests,sometimescoupledwithlimitedinvolve-ment in specialist activities and low profile advocacy, were identified asremainingchallengestobefacedbymanypatientgroups .

Achievements and challenges for the futureManyobjectiveshavebeenachievedtodate:awarenessaboutliverdis-ease has been raised through the use of media or high-profile innova-tivecampaigns;patientorganizations’supporthasfacilitatedchangesin lawsand legislationand theyhavealsohelped in setting thegoldstandardaswellasincreasingaccessforHCVtreatment .Furthermore,theyhavecontributedtotheintroductionofroutinenewbornHBVvac-cination,decreasedHBVandHCVdiseaseburdenandprevalence,anddestigmatization as well as increased recognition of patients’ humanrights .PatientorganizationshavealsomanagedtoorganizefreetestingandscreeningofpatientsandtopromoteHBVvaccinationinHCV-pos-itive patients . Patient organizations’ cultural and immigrant outreachhas been particularly beneficial for vulnerable, hard to reach groups.

Despiteanimpressivelistofachievementsmadeduringthelastyears,importantchallengesremaintobefacedforthenearfuture .

Someproposedlegislationsandprogramsstillneedtobeimplementedandadvocacyforimplementationofnationalplanshastocontinue .Insomeregions,e .g .theWestBalkans,furtherdevelopmentofassistancein thehealthsector isneeded . Inaddition,outreach tohard to reachpopulationssuchasinjectingdrugusersandimmigrants,remainsim-portant,usinganappropriateapproachandlanguage .

AwarenessshouldbeincreasedatgloballevelandreinforcedsupportoftheWorldHepatitisDayisneededwhilecooperationandpartner-shiptobuildonsuccessesduringEuropeanImmunizationWeekshouldbe ensured. Other, more specific challenges include increased aware-nessandknowledgeamonghealthcareworkersandimprovedqualityofepidemiologicaldata .

Patientorganizations’activitiesshouldbeexpandedacrossborders,be-tweencountries,aswasshownbytheexampleofGermanyandTurkeysuccessfullycollaboratinginpreventionprograms .

Patientorganizationsalsofeltthattheimpactoftheiractivitiesneedstobeevaluated,takingintoaccountwhathasbeenachievedandhowcost-effectivetheactivitieswere .

Finally, opportunities for the future were also considered such asVHPBendorsementoftheWorldHepatitisDayandELPArepresenta-tiononVHPBboard .

Based on a presentation by D. FitzSimons, WHO.

Viral Hepatitis

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BadurSelim Turkey

BonanniPaolo Italy

ColinetMuriel Belgium

CupsaCristina Romania

DelpireVéronique Belgium

EngelenEmmy Belgium

FitzSimonsDavid Switzerland

GardiniIvan Italy

GoldbergDavid UnitedKingdom

GoreCharles UnitedKingdom

GuérinNicole France

HallauerJohannes Germany

HasurdjievStanimir Bulgaria

HendrickxGreet Belgium

HesselLuc France

IonescuGheorghe Romania

JilgWolfgang Germany

KautzAchim Germany

KingThielThelma USA

LavanchyDaniel Switzerland

LipuccidiPaolaMichele France

MarinhoRuiTato Portugal

MatthewsSarah UnitedKingdom

MosinaLudmila Denmark

PiorkowskyNadine Germany

PopaCamelia Romania

ReicTatjana Croatia

Roudot-ThoravalFrançoise France

ShapiroCraig Switzerland

ShouvalDaniel Israel

SikorskaIlona Poland

SimonovicZdenko BosniaHerzegovina

SoSamuel USA

VanDammePierre Belgium

VanLeeuwenPaula TheNetherlands

VandenBergheFabienne Belgium

VanderpootenAnita Belgium

VorstersAlex Belgium

WardJohn USA

WexlerDeborah USA

WiersmaSteven USA

ZanettiAlessandro Italy

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