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1 POSITIVE AND PREGNANT: HOW DARE YOU WomenoftheAsiaPacificNetworkofPeopleLivingwithHIV March 2012 Astudyonaccessto reproductiveandmaternalhealth careforwomenlivingwithhivin Asia Findingsfromsixcountries: Bangladesh,Cambodia,India,Indonesia,Nepal,VietNam

2 POSITIVE AND PREGNANT: HOW DARE YOU Tableofcontents ListofFigures...ii ListofTables...ii ListofAbbreviations...iv ExecutiveSummary...1 Backgroundandmethod...1 Keyfindings...1 Keyrecommendations Backgroundandmethodology...5 Relevance...5 Methods...8 Quantitativesurvey...9 Qualitativeassessment...9 Limitations RespondentKdemographiccharacteristics LivingwithHIV...13 HIVdiagnosis...13 z Counselling...13 DisclosureofHIVstatus...16 Antiretrovirals Reproductivehealth...21 Contraception...21 Pregnancyoutcomes...22 Abortion...24 Delivery...26 Caesarean...27 Sterilisation Maternalhealthcare...31 Satisfactionwithservices...32 Integration...33 Cost Infanthealthcare...36 Infantfeeding...36 InfantARVprophylaxis...37 InfantHIVtesting Currentchallenges Keyrecommendations...44 i

3 POSITIVE AND PREGNANT: HOW DARE YOU ListofFigures Figure1:PercentageofHIVKpositivepregnantwomenwhoreceiveARVs, Figure2:PeopletowhomHIVKpositivepregnantwomendisclosedtheirHIV...16 Figure3:CD4cellcount(/µl)attimeofARVinitiation...19 Figure4:Awareness,availability,usageandpreferenceofcontraceptivemethods...21 Figure5:Proportionoflivebirthsconductedthroughnaturaldeliveriesorcaesareansections...26 Figure6:Personswhomaderecommendationtoundergosterilisation...29 Figure7:WherewomenseekHIVtreatmentservices...31 Figure8:ANCservicesreportedtobeavailableandthenumberofwomenwhoreceivedservices...32 Figure9:Accesstointegratedhealthcareservicesatgovernmenthospitals,bycountry...34 Figure10:Infantfeedingpractices,bycountry...36 Figure11:Availablenewbornandchildhealthservices,bycountry...39 ListofTables Table1:EstimatesoftheHIVepidemicinselectedAsiancountries, Table2:GlobalandregionalestimatesofHIVservicesforwomenandchildren...7 Table3:SocioKdemographiccharacteristicsofsurveyrespondents,bycountry...11 Table4:Mainsourcesofincomeandeducationlevel,bycountry...12 Table5:TimingofHIVdiagnosis,inrelationtomostrecentpregnancy,bycountry...13 Table6:PreKtestandpostKtestcounsellingreceived,bycountry...14 Table7:DisclosureofHIVstatus,bycountry...16 Table9:ARVuptakeandtimeofARVinitiationinrelationtopregnancy,bycountry...18 Table10:Outcomeofmostrecentpregnancyamongwomenwhodeliveredinpast18months...22 Table11:PregnancydecisionKmakeramongcouples,bycountry...24 Table12:Recommendationsforsterilisation,bycountry...29 Table13:ARVuptakeamongmothersandinfantswhobreastfeed,bycountry...37 ii

4 Acknowledgements Tremendousthanksisowedtothehundredsofwomenwhocontributedtomakingthisstudy possible,particularlytheseventeenwomenwhoalsoagreedtofollowkupinterviewsandtheone hundredwomenwhoparticipatedinfocusgroupdiscussions.itishopedthatthisreportwillenable theirvoicesandexperiencestobeheard,effectingproactivechangeforimprovedsexual, reproductiveandmaternalhealthcareandrightsforwomenlivingwithhivinasia. Thanksarealsoextendedtomembersofthepositivenetworksthathelpedcoordinatemanyaspects ofthestudy,spenthoursconductingthesurveys,andhelpedwithtranslationduringfollowkup interviewsandfocusgroupdiscussions.inparticular, Bangladesh:HabibaAkterandAsmaParvinofAsharAloSociety Cambodia:PrumDalish,ChapChantha,andMonyPenofCambodianCommunityofWomenliving withhiv,andchanthymom(translator) India:DaxaPatelandArpitaDeboftheGujaratStateNetworkofPeoplelivingwithHIV,andAsha RamaiyaofInternationalTreatmentPreparednessCoalitionIndia Indonesia:MayaPutriniandOmarSyarifoftheIndonesianNetworkofPLHIVWomen staskforce (JOTHI),andSunarsihoftheAssociationofIndonesianPositiveWomen Nepal:ShovaBohara,PuspaThapaandSumitraBhujeloftheNationalAssociationofPLHIVinNepal, andshivalalacharyaandanupamapun(translators) VietNam:TruongJeanDarc,QuachThiMaiandLaiMinhHongoftheVietNamNationalNetworkof PeoplelivingwithHIV,andVuGiangNam(translator) EnormousgratitudegoestoJenniferHoofTREATAsia,forherinvaluableandinsightfulsupport duringallphasesofthestudy. APN+wouldalsoliketoacknowledgetheunwaveringfinancialandtechnicalsupport, encouragement,andenthusiasmforthisstudyshownbyjanewilson,geetasethi,andbob VerbruggenatUNAIDS,PaulaBulanceaatUNICEF,SarahZaidiattheInternationalTreatment PreparednessCoalition,aswellasstaffattheHIV/AIDSTechnicalSupportFacilityforSouthKEastAsia andthepacific. LieslMesserschmidt,MPH,HealthandDevelopmentConsultingInternational,LLC,trainedthedata collectors,conductedtheinkdepthinterviewsandcompiledafirstdraftofthereport. KarinaRazali,PhD,HARTConsultancy,analysedthequestionnaires. LayoutanddesignofthisreportwasbyFriedaLee. StaffoftheAsiaPacificNetworkofPeoplelivingwithHIVsawaneedandfoundthemeanstomake thisstudyhappenincludingshibaphurailatpam,kirenjitkaurandthanidboonridrerthaikul. SusanPaxton,PhD,APN+Advisor,conductedthefocusgroupdiscussions,carriedoutfurther quantitativeandqualitativedataanalysisandwrotethisfinalreport. GinaDavis WomenofAPN+ iii

5 ListofAbbreviations 3TC ANC APN+ ARV AZT d4t EFV FGD HIV JOTHI NVP PLHIV PMTCT SRHR STI TDF UNAIDS UNGASS UNICEF WAPN+ WHO Lamivudine AntenatalCare AsiaPacificNetworkofPeopleLivingwithHIV Antiretroviralmedicine Zidovudine Stavudine Efavirenz Focusgroupdiscussion Humanimmunodeficiencyvirus Jaringan'Orang'Terinfeksi'HIV'Indonesia(IndonesianNetworkofPLHIV) Nevirapine PeoplelivingwithHIV PreventionofmotherKtoKchildtransmission Sexualandreproductivehealthandrights SexuallyKtransmittedinfection Tenofovir JointUnitedNationsProgrammeonHIV/AIDS UnitedNationsGeneralAssemblySpecialSession UnitedNationsChildren sfund Women sprogramoftheasiapacificnetworkofpeoplelivingwithhiv WoldHealthOrganization iv

6 Executive summary 1 ExecutiveSummary Backgroundandmethod Globally,anestimated17millionwomenandgirlsarelivingwithHIV,andmorethantwomillion pregnanciesoccuramongsthivkpositivewomeneachyear.in2009,anestimated370,000children acquiredhiv.whilethetotalnumberofchildrenbeingbornwithhivhasdecreasedduetothe increasedaccesstoservicesthatsupportwomenlivingwithhivtohavehivkfreebabies(usually referredtoaspreventionofmotherktokchildtransmissionorpmtct),themajorityofremaining casesoccurinresourcekpoornations.keychallengesintheprovisionofeffectiveservicesinclude:i) lowlevelsofhivtesting;ii)lowcoverageofservices;iii)lowknowledgeabouttheneedforpmtct, andthecomponentsforeffectivepmtct;iv)poorlyresourcedhealthcaresystems;v)losstofollowk up;andvi)poordrugadherence.pregnanthivkpositivewomenfacestigma,discrimination,and sometimesviolence,compromisingtheirhealthandendangeringthelivesofthemselvesandtheir children.discriminationmayleadtopoorqualitycareorrefusalofantenatalcareanddelivery services,andincreasedcoerciontobesterilised. ItisinthiscontextthattheWomen sprogramoftheasiapacificnetworkofpeoplelivingwithhiv (WAPN+),togetherwiththeRegionalTreatmentWorkingGroup,conductedastudyonpositive women saccesstoreproductiveandmaternalhealthcareandservicesinsixasiancountries: Bangladesh,Cambodia,India,Indonesia,Nepal,andVietNam.Theobjectiveofthestudywasto assesstheexperienceofaccessingreproductiveandmaternalhealthservicesasreportedbyhivk positivewomenover16yearsofageandpregnantinthepast18months.thestudyused quantitativeandqualitativemethods:asurveyamong757women,17interviewsand10focusgroup discussions. Keyfindings Meanageofrespondentswasjustunder30yearsold,theyhadonaverageatleastoneexisting child,andmosthadeitherprimaryorsecondaryschoolleveleducation(71%).abouthalf(53%) weredependentontheirfamiliesforincome;57%livedinurbansettings,and77%weremarriedor livingwithapartner.themajorityofthewomen(56%)werediagnosedpriortotheirmostrecent pregnancy,27%during,and10%aftertheirmostrecentpregnancy.inindia,amajoritywas diagnosedduringpregnancy. Counselling Mostwomen(73%)receivedpreKtestcounselling,butinIndia,only50%ofwomentestedduring pregnancyreceivedprektestcounselling.thevastmajorityofwomen(90%)receivedpostktest counsellingalthoughonly9%ofwomenwhosaidthetestwasnotvoluntaryreceivedpostktest counselling.qualityofcounsellingrangedfrombarelyadequate,tocomprehensive.theimportance oftimely,accurate,andappropriatecounsellingprovidedbyhivkpositivewomenthemselves, coveringarangeofissues,andavailableconsistentlyandonalongktermbasis,wasarecurring theme. Disclosure Over90%ofwomensurveyedreportedhavingtoldtheirhusbandorpartnerabouttheirHIVstatus, andbetween40k60%haddisclosedtofemalefamilymembers.manywomenfaceddiscriminationas aresultofdisclosure,usuallyfrommotherskinklaworhealthcareworkers.somewomendidnot revealtheirhivstatustotheirgynaecologistforfearofdiscrimination.

7 Executive summary Antiretrovirals Themajorityofwomen(64%)werecurrentlytakingARVs,with50%initiatingARVsbeforetheir currentpregnancyandtheremainderinitiatingarvsduringpregnancyoratthepointofdelivery; 29%ofrespondentswereonaregimenthatincludedd4T.SeveralwomenwhoinitiatedARVshad discontinuedthembutwerestillpregnantatthetimeofthesurvey.reasonsforstoppingtreatment ornotseekingtreatmentinclude:cost(oftransportation,doctor sfees,laboratorytests, procedures);adversesideeffects;andstockkoutofdrugs. Contraception Only64%ofrespondentssoughtadviceorcounsellingregardingtheirsexualandreproductive healthpriortotheirmostrecentpregnancy.condomswerethemostpreferredcontraceptive method(64%).condomsarenotusedconsistentlybecausepartnersobjecttocondomsandfind theminconvenient,ortheycannotaffordthem.condomsareusuallytheonlycontraception promotedamonghivkpositivewomen,whereastheyneedfamilyplanningmethodsthattheycan control IUDs,pills,orinjectables. Pregnancy Amongwomenpregnantinthelast18monthsbutnotcurrentlypregnant,72%hadlivebirths,and 28%hadanabortion,miscarriedorhadastillbirth;27%ofpregnancieswereunplanned,and37% werereportedasunwanted.plannedpregnanciestendedtobefirstpregnancies,orfirst pregnancieswithanewhusbandorpartner.lessthanhalfofrespondentsreportedthatdecisions regardingtheirpregnancyweremadetogetherwiththeirhusbandorpartner. Abortion Amongthe573respondentsnolongerpregnantatthetimeofthesurvey,125(22%)reportedthat theyhadanabortion,andmostoccurredspecificallybecauseoftheirhivstatus;29%ofwomenwho hadanabortionsaidthepregnancyhadbeenwanted.manywomencoercedintoanabortionfaced considerablediscriminationwhentheywentfortheprocedure. Delivery Overall,63%ofthe426deliverieswerevaginal,and37%caesarean.Manywomenwerenotgivena choicetohaveavaginaldelivery.womenoftenfacedterribleneglect,abuseanddiscrimination frommaternalhealthcareworkersatthetimeofdelivery. Sterilisation Overall,30%ofwomensurveyedwereencouragedtoconsidersterilisation.Themajorityof recommendations(61%)camefromgynaecologistsandhivcliniciansandweremadeonthebasisof thewoman'shivkpositivestatus.therewasapositivecorrelationbetweenwomenwhohad caesareansandwomenwhowererecommendedtobesterilised. Maternalhealthservices Ofwomensurveyed,81%reportedreceivingsomepregnancyKrelatedhealthcare,including58%of womenseekingserviceswithintwomonthsofthepregnancy.mostwomenonlyseekobstetriccare aroundtimesofpregnancyoractivegynaecologicalproblems.costisthemostimportantfactorfor mostwomenindecidingwhethertoutiliseservices.therewasastrongcorrelationbetween receivingcareandhavingalivebirth. Thequalityofcarevarieddependingonaffordability,convenienceandavailability.Satisfactionwith servicesrangedfromindia78%,cambodia68%,nepal68%,bangladesh67%,indonesia60%,toviet Nam34%. 2

8 Executive summary Overall42%ofwomenhaddifficultyfindingagynaecologisttocareforthemduringtheirpregnancy duetotheirhivkpositivestatus,and18%werenotsatisfiedwiththeconfidentialityaffordedto them.mostrespondentsbelievedthatconfidentialitycouldbebettermaintainedinanintegrated healthcaresettingandsaidtheywouldutilisehealthcareservicesmoreregularlyiftheywere integratedwithinthesamefacility. Infanthealthcare Formulafeedingwasmostcommonlypracticed(exceptinNepal).Ofthe89infantswhowere breastfed,only35%wereonarvprophylaxis.amongwomenwhohadlivebirthsatlastpregnancy, 57%reportedthattheirchildhadbeentestedforHIV. Keyrecommendations Investinpositivewomen'sorganisations IncreasecapacityofHIVKpositivewomen sorganisationstorespondtotheirneeds Trainpositivewomenandtheirpartnersatnational,provincialandlocallevelabouttheir sexualandreproductivehealthandrightsandincreasepositivewomen'scapacityindecision making Facilitatepositivewomen scapacitytoadvocatefortheirrightstosexual,reproductiveand maternalhealthcareservices Expandcounselling TrainandemployHIVKpositivewomenascounsellorsatallgovernmenttestingcentres ExpandHIVcounsellingbeyondpostKtesttoincludepsychoKsocial/emotionalsupport,ARV treatment,srhradviceandsupport;considercoupleandfamilycounsellingwhenwomen donothavedecisionkmakingauthority;strengthenreferralsystemstohealthcareservices Upholdpositivewomen'srights EnsuregovernmentsfulfiltheirobligationstoprotectHIVKpositivewomen srightsaccording tointernationaltreaties Ensurenowomaniscoercedintotesting,abortion,sterilisation,caesarean EnsureHIVKpositivewomenhaveaccesstoarangeofcontraceptiveoptionsthattheycan control,toavoidunwantedpregnancies EnsureWHOGuidelinesonARVsareadopted Ensurenopositivewomanexperiencesdiscriminationwithinthehealthsector Trainobstetricandgynaecologicalserviceproviderstobesensitivetotheneedsandrights ofhivkpositivepregnantwomen;includetrainingonqualityofcareandpositivewomen s sexualandreproductivehealthandrightsinclinicalmanagementandcurriculumtrainingof healthcareworkers Integrateservicestoimproveaccess,utilisationandfollowKup,andreducediscrimination 3

9 Executive summary Expandsocialsecurity Reviewnationalguidelinesforsocialservicesrequirementsandexpandsocialwelfareand nutritionalsupportforpositivewomenandchildren ProvidetransportsubsidyformothersonlowincometoattendARVcentres ImproveHIVKpositivewomen sincomegenerationcapacity 4

10 Methods 1.Backgroundandmethodology TheWomen sprogramoftheasiapacificnetworkofpeoplelivingwithhiv(womenofapn+,or WAPN+)wasestablishedin2006.WAPN+ svisionistheempowermentofwomenlivingwithhivin theregiontoprovideaunitedvoice,improvethequalityofourlives,andensureourrightsare protected. 1 WAPN+ skeyobjectivesaretoadvocateforhivkpositivewomen sneedsandrights, improveourcapacitytotakeonleadershiproles,andincreaseourfullparticipationindecisionkand policykmaking,includingonkeyissuesrelatedtooursexualandreproductivehealth. Thisstudyonpositivewomen saccesstoreproductiveandmaternalhealthcareandserviceswas conductedinsixsouthandsouthkeastasiancountries:bangladesh,cambodia,india,indonesia, NepalandVietNam.Countrieswereselectedtoincludeamixoflowandconcentratedepidemics andcoverageofservicesthatsupportwomentohavehivkfreebabies(usuallyreferredtoas preventionofmotherktokchildtransmissionorpmtct).theobjectiveofthestudyistoexaminethe experienceofaccesstoreproductiveandmaternalhealthcareandservicesbyhivkpositivewomen whohavebeenpregnantinthepast18months. ThemixedKmethodologystudywasconductedinthreephases:aquantitativequestionnaireinthe sixselectedcountries,inkdepthinterviewswithwomenincambodia,indiaandindonesia,andfocus groupdiscussionswithwomeninbangladesh,cambodia,nepalandvietnam. Thefindingsfromthisstudyprovideaperspectiveintothesocialrealitiesexperiencedbypositive womenandgirlslivingwithhivwhentryingtoutilisereproductiveandmaternalhealthcare services.therecommendationsprovideguidanceonactiontobetakenincollaborationwith governments,thehealthcaresector,civilsocietyandotherpartners,towardsensuringnationalhiv policiesandprogramsrespondandprotectthespecificneedsandrightsofallpositivewomen. Relevance Globally,anestimated17millionwomenandgirlswerelivingwithHIVin2009(nearly52%ofthe estimated33.3millionadultslivingwithhiv),andmorethantwomillionpregnanciesoccureach yearamonghivkpositivewomen. 2,3 HIVprevalencerateamongwomenhasincreasedsincetheearly 1990s,partlyduetoincreasedHIVtestingduringpregnancy.In2009,anestimated370,000children acquiredhivworldwide,a24%dropcomparedto2004duetotheincreasedaccesstoservicesthat supportwomentohavehivkfreebabies. 4 HIVtestingamongpregnantwomenisestimatedtobeat42%coverageworldwide, 5 howeversome studiesindicatethatonly9%ofpregnantwomeninnepalweretestedforhivin2009,andin Indonesia,lessthan1%. 6,7 AccordingtotheWorldHealthOrganization(WHO),themainbarriersto theexpansionofhivtestingandcounsellingamongpregnantwomenisthelackofaccessto 1 AsiaPacificNetworkofPeopleLivingwithHIV(APN+),2010. WomenofAsiaPacificNetworkofPeopleLiving withhiv.availableathttp://www.apnplus.org/main/index.php?module=project&project_id=3 2 UNAIDS,2010.GlobalReport:UNAIDSReportontheGlobalAIDSEpidemic,2010.JointUnitedNations ProgrammeonHIV/AIDS(UNAIDS) 3 McIntyre,James,2005.MaternalHealthandHIV.ReproductiveHealthMatters2005;13(25): Availableathttp://www.rhmKelsevier.com/article/S0968K8080%2805% K4/abstract 4 ibid 5 WHO,2010TowardsUniversalAccess:ScalinguppriorityHIV/AIDSinterventionsinthehealthsector(Annex 5). 6 GovernmentofNepal,MinistryofHealthandPopulation,UNGASSCountryProgressReportNepal NationalAIDSCommissionIndonesia,Republic'of'Indonesia':'Country'Report'on'the'Follow'up'to'the' Declaration'of'Commitment'On'HIV/AIDS'(UNGASS):'Reporting'Period'2008':' ,NationalAIDS CommissionRepublicofIndonesia. 5

11 Methods antenatalcare(anc)services. 8 Factorsinfluencingaccessinclude:i)knowledgeandawareness;ii) distancetothehealthfacility;iii)availabilityandcost(oftransportation,services,laboratorytests, procedures,doctorfees,andmedications);andiv)confidentialityandattitudesofhealtcare providers. Table1:EstimatesoftheHIVepidemicinselectedAsiancountries, Country Estimatedadult (15K49yrs)HIV prevalence(%) Estimatedpeople livingwithhiv (adults+children) Estimatedwomen livingwithhiv (15+yrs) Bangladesh <0.1 6,300 1,900 Cambodia ,000 35,000 India mil 880,000 Indonesia ,000 88,000 Nepal ,000 20,000 VietNam ,000 81,000 TheWHOestimatedthatin2009,45%ofwomenand37%ofmeninneedofantiretrovirals(ARVs) receivedthem. 10 A2007studyfromSouthKEastAsiashowedthatmorewomenthanmenreceived ARVsdespitethefactthatmoremenarelivingwithHIV. 11 Thisisexplainedpartlybyearlieraccess bywomentohivtestingduringpregnancy,andprioritisationofmothersfortreatmentfollowingthe deathofahusbandorchild.whoreportedanestimated53%ofpregnantwomenlivingwithhiv receivedarvstoreducetheriskoftransmittinghivtotheirinfantsin2009,upfrom15%in InAsia,only23,800(32%)oftheestimated73,800womeninneedofservicestosupportthemto havehivkfreebabiesreceivedsuchcare. Keychallengesintheprovisionofeffectiveservices,particularlyinresourceKlimitedsettings,include: i)manypregnantwomenareunawareofbeinghivkpositiveandtherearelowlevelsofhivtesting; ii)lowcoverageofpmtctservices;iii)lowknowledgeabouttheneedforpmtct,andthe componentsforeffectivepmtct;iv)poorlyresourcedhealthcaresystems;v)losstofollowkup(due tovariouseconomicandsociokculturalfactors);andvi)poordrugadherence. 8 WHORegionalOfficeforSouthKEastAsia,2010.HIV/AIDSintheSouthKEastAsiaRegion:Progressreport 2010.WorldHealthOrganization. 9 UNAIDS,2010.GlobalReport:UNAIDSReportontheGlobalAIDSEpidemic,2010.JointUnitedNations ProgrammeonHIV/AIDS(UNAIDS). 10 WHO(2009).WomenandHealth:Today sevidence,tomorrow sagenda.worldhealthorganisation. 11 LeCœur,Collins,Pannetieret'al.,'2009.GenderandaccesstoHIVtestingandantiretroviraltreatmentsin Thailand:Whydowomenhavemoreandearlieraccess?Social'Science'&'Medicine'69:p.846K WHO,2010.ScalingupHIVservicesforwomenandchildren.ChapterinTowards'Universal'Access:'Scaling' up'priority'hiv/aids'interventions'in'the'health'sector.'2010'progress'report. 6

12 Methods Table2:GlobalandregionalestimatesofHIVservicesforwomenandchildren 13 HIVserviceparameters PregnantwomenwhoreceivedanHIVtest(inlowKand middlekincomecountries) 26% 7% PregnantwomenwhoreceivedHIVtestingandcounselling (ineast,southandsouthkeastasia) 17% 2% PregnantwomenlivingwithHIVreceivingARVsinlowKand middlekincomecountries 53% [40K79%] 15% [12K18%] PregnantwomenlivingwithHIVreceivingARVsinEast, 32% SouthandSouthKEastAsia [22K52] 9% InfantsreceivingARVprophylaxisinlowKandmiddleKincome countries 35% [26K53%] 12% [26K40%] InfantsreceivingARVprophylaxisinEast,SouthandSouthK EastAsia 32% 7% PregnantHIVKpositivewomenfacestigma,discrimination,andsometimesviolence,compromising theirhealthandendangeringtheirlivesandthelivesoftheirchildren.discriminationmayleadto poorqualityantenatalcareorrefusalofanc,labouranddeliveryservicesforpregnantpositive women,andincreasedcoerciontoabortorbesterilised. 14 In2010,theWHOreleasedupdatedguidelinesonARVsforpregnantwomen.Theseguidelines recommendthatpregnantwomenlivingwithhiv,andtheirexposedinfants,receivemore efficaciousregimensasopposedtosinglekdosenevirapine,andthatallwomenneedingarvsfor theirownhealthreceiveit.,15,16 Overallrecommendationsinclude: EarlierstartandlongerdurationofARVsinwomenandchildren NeedforstrategiesandincreasedcapacitytoassesseligibilityforARVs LongKtermmonitoring,includingofadherencetoARVs Scalingupinterventionstoreachmorewomenandchildren Whereappropriate,integratingHIVinterventionswithinroutinematernal,childandother healthservices ProvisionsofARVstothemotherorchildtoreducetheriskofHIVtransmissionduringthe breastfeedingperiod. WHOnowrecommendsbreastfeedingasagoodoptionforeverybaby,includingthosebornto motherslivingwithhiv. 17 Updatedguidelinesoninfantfeedingrecommendthatnationalhealth authoritiesdecidewhethertocounselandsupportmothersknowntobehivkpositivetoeither:i) breastfeedandreceivearvs;orii)avoidallbreastfeeding,withthechoicegovernedbywhichis mostlikelytoresultinhivkfreesurvivalofhivkexposedinfants. Positivemothersshouldonlygiveformulamilkasareplacementtobreastfeedingif: safewaterandsanitationareassuredatthehouseholdlevelandinthecommunity;and 13 WHO,2010.ScalingupHIVservicesforwomenandchildren.ChapterinTowards'Universal'Access:'Scaling' up'priority'hiv/aids'interventions'in'the'health'sector.'2010'progress'report. 14 ibid' 15 WHO,2010.AntiretroviraldrugsfortreatingpregnantwomenandpreventingHIVinfectionininfants. 16 WHO,2010.TowardsUniversalAccess:ScalinguppriorityHIV/AIDSinterventionsinthehealthsector. 17 WHO.2010.GuidelinesonHIVandinfantfeeding2010.Principlesandrecommendationsforinfantfeeding inthecontextofhivandasummaryofevidence. 7

13 Methods themotherorcaregivercanreliablyprovidesufficientformulamilktosupportnormal growthanddevelopmentoftheinfant;and themotherorcaregivercanprepareitcleanlyandfrequentlyenoughsothatitissafeand carriesalowriskofdiarrhoeaandmalnutrition;and themotherorcaregivercan,inthefirstsixmonths,exclusivelygiveformulamilk;and thefamilyissupportiveofthispractice;and themother/caregivercanaccesshealthcarethatofferscomprehensivechildhealthservices. Inthesixcountriescoveredinthisstudy,thereislimitedoverallprogressinprovidingaccessto servicestosupportwomentohavehivkfreebabies.in2009,approximately30%ofpositivepregnant womenincambodiaandvietnamreceivedarvstoreducetheriskofhivtransmissiontotheir child,whereasindiareportedlyachievedlowerthan20%,andindonesiaandnepallessthan4%(no dataavailableforbangladesh). Figure1:PercentageofHIVKpositivepregnantwomenwhoreceiveARVs, ,19,20,21,22,23 Methods Thestudyincludedaquantitativesurvey(n=757)inthesixselectedcountries,17inKdepthinterviews incambodia,indiaandindonesia,andtenfocusgroupdiscussionswith95positivewomenin Bangladesh,Cambodia,NepalandVietNam.Discussionswerealsoconductedwiththepositive people'sorganisationsineachcountry.theselectionofstudycountriesincludedarangeoflowand concentratedepidemicsandcoverageofservicesinsouthandsouthkeastasia.theexistenceand capacityofnationalnetworksofwomenlivingwithhivtoparticipateinthissurvey,aswellas followkuponpreviousstudiessuchaswapn+ s2009researchintowomen saccesstohivservicesin Asia, 24 werealsotakenintoconsiderationintheselectionofcountries. Percentage 35.0% 30.0% 25.0% 20.0% 15.0% 10.0% 5.0% 0.0% 32.3% 17.4% 18 DatanotavailableforBangladesh. 19 NationalAIDSAuthority,Cambodia'Country'Progress'Report:'Monitoring'the'Progress'towards'the' Implementation'of'the'Declaration'of'Commitment'on'HIV'and'AIDS':'Reporting'period'January'2008':' December' NationalAIDSControlOrganisation,MinistryofHealthandFamilyWelfare,GovernmentofIndia,Country ProgressReport:ReportingPeriodKJanuary2008toDecember2009,India. 21 NationalAIDSCommissionIndonesia,Republic'of'Indonesia':'Country'Report'on'the'Follow'up'to'the' Declaration'of'Commitment'On'HIV/AIDS'(UNGASS):'Reporting'Period'2008':' ,NationalAIDS CommissionRepublicofIndonesia. 22 GovernmentofNepal,MinistryofHealthandPopulation,UNGASSCountryProgressReportNepal TheSocialistRepublicofVietNam,UNGASS'Country'Progress'Report:'Reporting'period''January'2008':' December' :Hanoi. 24 Women sworkinggroupofapn+(wapn+),2009.a'long'walk:'challenges'to'women s'access'to'hiv' services'in'asia.'bangkok.www.apnplus.org/publications 3.8% 3.3% % Cambodia India Indonesia Nepal Vietnam

14 Methods 9 Quantitativesurvey ConveniencesamplingwascarriedoututilisingknownnetworksofwomenlivingwithHIV.The eligibilitycriteriawaswomenabovetheageof16withaconfirmedhivkpositivetest,anda confirmedpregnancywithinthepast18months. The757womenwhocompletedthesurveyincluded:Bangladesh33,Cambodia200,India172, Indonesia109,Nepal40,andVietNam203. SelectedmembersfromeachparticipatingnationalnetworkofpeoplelivingwithHIV(PLHIV) administeredthesurvey.priortothesurvey,athreekdaytrainingworkshopwasconductedin Bangkoktoreviewanddiscussethicalissues,rationaleforthestudy,researchmethodsandthe applicationofthequestionnaire.thequestionnairewastranslatedintolocallanguages.data collectionwasconductedbetweenfebruaryandmarch2011.becausemanyrespondentswere semikliterate,surveyswereadministeredorally.thequestionnaireincludedsectionson: i. Socialdemographics ii. HIVtreatment iii. Pregnancy iv. Sexualandmaternalhealth v. Infanthealthcare vi. Healthcarefacilities CompletedsurveysweresenttotheWAPN+officeinBangkokforcompilationanddataentryinto SPSSStatisticalPackage.Simpledescriptivestatisticalanalyseswerecarriedout. Qualitativeassessment DiscussionswereheldwithleadersoftheparticipatingPLHIVnetworkstoidentifycriticalissues concerningpositivewomenspecifictotheircountries.participatingnetworksincludedtheasharalo Society,Bangladesh,CambodianCommunityofWomenlivingwithHIV,IndonesianNetworkof PLHIV(JOTHI),GujaratStateNetworkofPeoplelivingwithHIV,NepalNetworkofPLHIV,andthe VietNamNetworkofPLHIV. Seventeeninterviewswereconductedinthreesites:PhnomPenh,Cambodia(6),Ahmadabad,India (6)andJakarta,Indonesia(5),inJune2011.Tenfocusgroupdiscussion(FGDs)wereconductedin fivesites:dhaka,bangladesh(2),phnompenh,cambodia(2),kathmandu,nepal(2),hanoi,viet Nam(2)andHoChiMinhCity,VietNam(2)inOctober/November2011.FGDSincluded6K12 participants(total95). WiththehelpoflocaltranslatorsallinterviewswereconductedbyoneresearcherandallFGDsby anotherresearcher.interviewsandfgdsrangedfromtwotothreehours.pseudonymswere identifiedbyallinterviewrespondentsandmostfgdparticipants,butincambodia,nepalandviet NamseveralFGDrespondentsinsistedtheirrealnamesbeusedifquoted.Respondentswerenot paidfortheirparticipationbuttheirtransportationandaccommodationexpenseswerereimbursed. Limitations Therewereseverallimitationstothestudy. Sampling Conveniencesamplingmayhaveledtoageographicalbias,thougheffortwasmadetofind participantsfrombothruralandurbancentres,onandoffroads.halfofthewomenhada connectiontoanexistingplhivnetwork,andthereforemayhavemoreexposuretoinformationon reproductiveandmaternalhealththanotherpositivewomenhave.

15 Methods Surveyinstrument Thewiderangeofissuesincludedinthesurveyresultedinalongquestionnaire(over100items)and preventeddetailedprobing.whilethiswastoacertainextentmitigatedbythefgdsand interviews,itbecameclearafterdatacollectionthatspecifickeyquestionsweremissedinthe survey.forexample,althoughwomenwereaskedwhethertheyhadbeenencouragedtobe sterilised,womenwerenotaskedwhethertheyhadbeenorintendtobesterilised.backtranslation wasnotemployedandsomequestionsweretranslateddifferentlyindifferentcountries. Consequentlysomedatawasnotcollected(e.g.inVietNamandCambodia,womenwerenot specificallyaskedwhethertheirpregnancyresultedinamiscarriage).thestudywouldhave benefitedgreatlyfrompilottesting. Samplesize Distanceandtimelimitedthenumberofrespondentsthatcouldbereachedwithinthedata collectionperiod.althoughmanyfindingsareexpressedaspercentages,particularcareshouldbe takenwheninterpretingresultsforbangladeshandnepalbecauseofthesmallsamplesizes( 40). Dataquality Thereweresomecontradictionsinrespondentanswerstosimilarquestionsindifferentsectionsof thequestionnaire,anddifferentunderstandingofsomequestionswithinandbetweencountries. Giventhelengthofthequestionnaire,theformat,andtheamountoftimeittooktoadminister (rangingfromonetothreehours),therewaslittleopportunitytoclarifyquestionsandanswers. Fortheseandotherreasons,cautionshouldbeusedwhenextrapolatingthefindingstoother countriesinasia. 10

16 Methods 11 2.Respondent]demographiccharacteristics Atotalof757womenweresurveyed(Bangladesh33,Cambodia200,India172,Indonesia109, Nepal40,VietNam203).Onaverage,therespondentswere29.3yearsold(range:17K47years; standarddeviation5.4years)andhadoneexistingchild(range:0k8).themajorityofrespondents (77.2%)werecurrentlymarriedorlivingwithapartner,2.0%hadnevermarriedorlivedwitha partner,andtheremainderwerewidowsorwomennolongerlivingwithapartner.overall57.2%of respondentslivedinurbansettingsand42.8%livedinruralareas. Table3:SocioKdemographiccharacteristicsofsurveyrespondents,bycountry Socio]demography characteristics TOTAL Bangladesh Cambodia India Indonesia Nepal VietNam Totalrespondents Age(years) Mean Range K K K K K K45 Residence Urban (%) Rural (%) 433 (57.2%) 320 (42.8%) %' %' %' %' %' %' %' %' %' %' %' %' Maritalstatus Currentlymarried/with partner (%) Evermarried/withpartner (%) Nevermarried/withpartner (%) 581 (77.2%) 157 (20.8%) 15 (2.0%) %' 3 9.1%' 0 0%' %' %' 5 2.5%' %' 9 5.3%' 0 0%' %' 9 8.3%' 9 8.3%' %' %' 0 0%' %' %' 1 0.5% Numberofchildren Mean Range 1.7 0] K K K K K K4 Halfofallrespondents(52.8%)dependedontheirfamilyormembersoftheirhouseholdfortheir mainsourceofincome,37.3%hadsomeformofindependentincomeand7.9%hadnosourceof income.invietnamsubstantiallymorerespondents(46.5%)wereselfkemployedthaninother countries.whilstthemajorityofwomen(70.9%)hadeitherprimaryorsecondaryleveleducation, 15.7%hadneverbeentoschool.RespondentsfromIndonesiaandVietNamspentthelongesttime inschool(average11.9and9.4years),whereasthewomenfromnepalandcambodiaspentleast timeinschool(average3.3and3.4years).

17 Methods 12 Table4:Mainsourcesofincomeandeducationlevel,bycountry Socio]demography characteristics TOTAL Bangladesh Cambodia India Indonesia Nepal VietNam Totalrespondents Mainsourceofincome(%) None (%) Household/family '''(%) SelfKemployed '''(%) Salary(regularemployment) '''(%) Dailywage '''(%) Other '''(%) 60 (7.9%) 400 (52.8%) 144 (19.0%) 84 (11.1%) 53 (7.0%) 11 (1.5%) %' %' 1 3.0%' 1 3.0%' 1 3.0%' 0 0%' %' %' %' 9 4.5%' 6 3.0%' 2 1.0%' %' %' 2 1.2%' 1 0.6%' %' 0 0%' %' %' 8 7.3%' %' 4 3.7%' 4 3.7%' 2 5.1%' %' %' %' %' 1 2.5%' 5 2.5% % % % % 4 2.0% Educationlevel(%) Neverbeentoschool (%) Primary/elementary (%) Secondary (%) Higher secondary/intermediate (%) University (%) 131 (17.3%) 266 (35.1%) 271 (35.8%) 73 (9.6%) 4 (0.5%) 2 6.1%' %' %' 2 6.1%' 1 3.0%' %' %' %' 2 1.0%' 1 0.5%' %' %' %' %' 0 0.0%' 1 0.9%' 9 8.3%' %' %' 1 0.9%' %' %' %' %' 0 0.0%' 7 3.4%' %' %' 9 4.4%' 1 0.5%' Yearsinschool(years) Mean Range 7.0 1] K K K K K K16 MostrespondentsweremembersofaPLHIVnetwork(Bangladesh97.0%,Cambodia40.0%,India 43.0%,Indonesia34.9%,Nepal100%,VietNam60.1%).Morethanhalfoftherespondents(59.9%) joinedbeforetheirmostrecentpregnancy,22.2%duringtheirpregnancyand17.9%aftertheirmost recentpregnancy.

18 Key issues 3.LivingwithHIV HIVdiagnosis Onaverage,respondentshadbeendiagnosedwithHIVforameanof3.6years(range:0K18years). Themajority(56.3%)werediagnosedpriortotheirmostrecentpregnancy,27.4%werediagnosed duringpregnancy,and9.9%aftertheirmostrecentpregnancy.therewerelargevariationsbetween countriesintermsoftimingofhivdiagnosis.cambodiarecordedthehighestpercentageofwomen whoknewtheirhivstatuspriortotheirmostrecentpregnancy(82.5%)andindiarecordedthe lowest(22.2%),withthemajorityofindianwomeninthestudy(73.7%)learningoftheirhivstatus duringtheirmostrecentpregnancy. Table5:TimingofHIVdiagnosis,inrelationtomostrecentpregnancy,bycountry Country Bangladesh Cambodia India Indonesia Nepal VietNam TOTAL TimingofHIVdiagnosis inrelationtomostrecentpregnancy Before During After (57.6%)' (0.0%)' (42.4%)' (82.5%)' (15.0%)' (2.0%)' (22.2%)' (73.7%)' (2.9%)' (59.6%)' (23.9%)' (12.8%)' (35.0%)' (7.5%)' (35.0%)' (61.6%)' (10.8%)' (11.8%)' (56.3%) (27.3%) (9.9%) 13 No answer (%) Total (n) 0.0%' %' %' %' %' %' ' (6.5%)' Womenwhotestedpositiveatgovernmentfacilitiesareusuallyreferredtothenearesthospitalthat prescribesarvs,andlinkedtooutreachworkersforfollowkup,butwomenwhotestatprivate facilitiesrarelyreceivedcounsellingorreferral. Counselling Overall,85.5%ofwomensurveyedsaidtheyhadtakentheHIVtestvoluntarilyandmostwomen receivedprektest(72.9%)andpostktestcounselling(89.8%).inindia,only50%ofwomentested duringpregnancyreceivedprektestcounselling.postktestcounsellingrateswerelowestinvietnam, whereoneinfourwomenreportednotreceivingpostktestcounselling. Whetherwomenreceivedcounsellingwassignificantlyrelatedtowhetherornotthetestwas voluntary,with90.6%ofwomenwhosaidthetestwasvoluntaryreceivingpostktestcounselling, comparedtoonly9.1%ofwomenwhosaidthetestwasnotvoluntary.onevietnamesewomanin anfgdsaidthataftertestingherblood,ahealthcareworkertoldhershehadaproblem,tookmore bloodandaskedformoremoney,andthenjustgavehertheresultwithoutanycounsellingor information. 757

19 Key issues 14 Table6:PreKtestandpostKtestcounsellingreceived,bycountry Country Pre]test counselling received Post]test counselling received Bangladesh 25 (75.8%)' 31 (93.9%)' Cambodia 185 (92.5%)' 194 (97.0%)' India 86 (50.0%)' 167 (97.1%)' Indonesia 94 (86.2%)' 100 (91.7%)' Nepal 29 (72.5%)' 33 (82.5%)' VietNam 133 (65.5%)' 155 (76.4%)' TOTAL 552 (72.9%) 680 (89.8%) Althoughpoliciesinallcountriesstatethattestingshouldbevoluntaryandincludecounselling, severalwomeninthequalitativearmofthestudyindicatedthattheywereunawareofbeingtested forhivwhenthetestwasdone,andresultswereoftengiventofamilymembers(andinonecase,a neighbour). Accordingtosurveyrespondents,thequalityof counsellingwomenreceivedrangedfrombarely adequatetocomprehensive,dependingonthe testingfacility,thedoctorandthecounsellor.some womeninfgdssaidtheyweregivennohopeon diagnosis.onedoctorgaveawomanhertestresult withthewords,getreadybecauseyouaregoing tobedeadsoon.anotherwomanwastold,there isnoneedtosavemoneybecauseyouwillnothave alonglife.manywomenindifferentcountries weregivenmisinformationbydoctorsandother healthcareworkersatthetimeoftheirdiagnosis. Onewomanwastoldthattheriskofherbaby gettinghivwas60%;anotherwastoldthatifshe andherpartnerdidnothavesafesexthereisarisk oftransmissionofhivtothebaby;anotherwoman waswarnedofthevirusswitchingbetweenher andherhusband.onewomanwastoldtotake paracetamoldailyforayear.' The'provincial'hospital'has'a'policy'to'test' all'pregnant'women.'i'didn't'know'i'had' been'tested.'they'put'me'in'a'separate' room'and'isolated'me'and'i'was'given'no' information.'shortly'after'the'birth'the' hospital'informed'my'mother'and'my' husband'of'my'status.'i'was'told'by'my' husband'one'month'after'the'birth'so'it' wouldn't'shock'me'too'much.'i'was'not' given'any'information'except'they'said'i' could'not'breastfeed'my'baby'because'i' had'a'difficult'delivery'and'i'had'lots'of' medication.'i'only'found'out'information' about'arvs'later'by'a'relative'who'works'at' the'district'health'station.' (Ha,VietNam)

20 Key issues 15 InIndia,whereahigh percentageof respondentswere testedduring pregnancy,women reportedthatprektest counsellingwasmore persuasiontobetested thancounselling. Accordingtomembers ofthegujaratstate NetworkofPeople LivingwithHIV, WomenarepreK counselledtosay yes andagreetothehiv test. WherepreKtestcounsellingdidexist,mostwomenreporteditwasmoretosolicit acknowledgementthattheyunderstoodtheywerebeingtestedforsomethingrequiringablood sample.severalwomenadmittedthat,evenwhenprektestcounselled,theydidnotunderstand whatthebloodtest wasfororwhathiv wasatthetimeof theirdiagnosis. Theimportanceof timely,accurate, andappropriate counsellingwasa recurringthemein allinterviews.in particular,women commentedon:i) theneedfor counsellingtobe availablelongkterm, notonlyprekor postktest,when manywomenare unabletoabsorb theinformation;ii) theneedtoincorporateemotionalsupportwithbasichivinformationandtreatmentliteracy,as wellassexual,reproductive,maternalandchildhealthinformation;andiii)theneedtoinclude adviceonnavigatingthehealthcaresystemasapositivewoman.mostindianwomeninterviewed feltthatcounsellingshouldinvolveextendedfamilymembers,inordertodispelmythsand inaccurateinformationabouthivtransmission,andemphasisedtheneedforregularandconsistent followkupcare. IninterviewsandFGDs, womeninallcountries highlightedtheimportance ofhavingtrainedhivk positivefemalecounsellors, whoarepeersand At'the'time'of'the'first'HIV'test,'I'was'not'counselled,'only'informed' that'the'routine'tests'would'include'hiv.''i'picked'up'the'blood' report'from'the'laboratory'myself,'and'opened'it'on'the'way'to'the' doctor s'office.''i'had'heard'of'hiv'when'i'was'in'school,'but'did'not' understand'what'it'was,'and'was'not'sure'what'the'test'result' meant...'i'decided'to'take'my'mother:in:law'to'my'next' appointment,'and'the'gynaecologist'told'her'i'had'hiv,'but'she' misinformed'her'by'telling'her'that'if'anybody'shared'food'with'me' or'touched'me'they'would'also'get'hiv.''after'that,'it'became'very' difficult'for'me.''my'mother:in:law'treated'me'very'badly'and'it'was' very'hard'to'convince'her'and'other'family'members'that'the' information'was'wrong,'especially'when'i'do'not'understand'hiv' much'either. (Muskan,India) Before'my'diagnosis,'I'had'only'ever'heard'the'word'HIV'from'a'TV' advertisement.'i'was'in'the'fifth'month'of'pregnancy,'and'i'went'to' the'hospital'for'an'initial'check:up'and'was'ordered'to'undergo'a' number'of'blood'tests,'including'one'for'hiv.''i'remember'receiving' some'pre:test'counselling'about'hiv'transmission'and'prevention,'but' I'didn't'understand'properly'and'didn't'take'much'interest'in'what'the' counsellor'said.''i'actually'didn't'collect'the'lab'report'when'it'was' ready'because'i'was'ill,'and'sent'my'husband.''when'he'took'the' report'to'the'doctor,'he'told'him'that'i'had'hiv...'i'have'some'reports' from'the'hospital'but'i'don t'know'what'they'are.'i'was'told'i'can' prevent'hiv'to'my'child,'but'i'don't'know'how.''probably'with' medicine.'the'doctor'did'tell'me'that'i'should'not'go'for'a'third' pregnancy'and'suggested'that'two'children'were'enough'for'me.''on' the'doctor s'suggestion'i'agreed'that'i'should'be'sterilised...'i'do'not' understand'how'i'could'have'gotten'this'disease.''what'kind'of' disease'has'no'cure'after'treatment?''i'do'not'understand'what'it'is.'' It'was'very'surprising'to'me'how'I'got'this'infection.''''' (Sita,India) When'I'received'the'news'I'was'despairing'but'then'I'was' referred'to'ashar'alo'society'[peer'support'organisation]'and'i' received'peer'counselling'and'i'saw'other'positive'women'who' gave'birth'to'a'negative'child'and'then'i'became'hopeful.' (Nasrin,Bangladesh)

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