NARRATIVE REPORT - REACH

NARRATIVEREPORT

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EXECUTIVESUMMARY

TBsurvivorsandchampions fromsixcountries inSouth-EastAsia - India, Indonesia,Vietnam,Cambodia, Bangladesh and the Philippines – came together to participate in the RegionalCapacityBuildingworkshopforTBSurvivors,organizedbyREACH,theStopTBPartnershipandUSAID.Thiswasheldbetween10and13April2017inNewDelhi,India.

Theworkshopbroughttogether30peoplefromsixcountrieswho,overthecourseoffourdays,sharedpersonalexperiencesonTB,documentedthesocietalandsystemicbarrierstheyfaced,translatedthebarrierstheyfacedintoconcreteadvocacygoalsandstrategiesanddiscussedthepowerofcollectivecommunity-drivenadvocacytochangethestatusquoinTB.

Aiming to build the capacity of potential TB Champions from across South-East Asia, theworkshop focused on strengthening their knowledge of TB, contextualizing their personalexperiencesofTBwithinabroaderpublichealthperspectiveandhelpingparticipantsdevelopadvocacyandcommunicationskills,learntotelltheirstoriesmoreimpactfullyandbuildeffectivepartnerships.Thisnarrativereport-

• Details the processes involved in organizing the workshop including identifyingparticipantsanddevelopingtheagenda;

• Describestheworkshopproceedingsandkeyhighlightsofeachday;• Documentsoutcomesfromtheworkshopincludingthedevelopmentofaseriesofshort

videosfeaturingTBChampionsandtheformationofacoalitionofpeopleaffectedbyTB;• Outlinesnextstepsandtheroll-outofanadvocacymentorshipprogramme.

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Whattheysaid…“IlostmyfathertoTB.Andafewyearsago,IwasdiagnosedwithTBaswellandIcouldnever

speakaboutit.It’sahugeburdentosufferalone.Thatiswhythisworkshopjustclickedforme.

Peoplewantedtolistentoourstories,andIhavelearnthowtotellmystoryevenbetter.”

- MrArunSinghRana,TBsurvivor&ChampionfromIndia

“ThevoiceofthesurvivorbecomesthevoiceofIndia.InTB,thereisadualstigma–oneisthe

diseaseitselfbuttheotherispoverty.ThisdualstigmacanbeexplainedbestbytheTBsurvivors.

TheTBfightisnotfinished–butsurvivorswillhelpusgetthere.TBsurvivorsatdifferentlevels

canbegreatambassadorsandpassthemessageveryefficientlysothatTBloses,andweallwin.”

- DrSunilDKhaparde,DeputyDirectorGeneral,TB,CentralTBDivision,MinistryofHealth

andFamilyWelfare,GovernmentofIndia

“Ifweare seriousaboutendingTB, engaging thosewhohaveexperiencedTB firsthand in a

meaningfulwayisvital.”

- DrLucicaDitiu,ExecutiveDirector,StopTBPartnership.

“ItiscriticalthatweactivelyengageTBchampionsindesigningandimplementingprogramsand

advocatingforpolicychange.Theirexperiencescanguidethewayforwardaswemovetowarda

TB-freeIndiaandworld.”

- MrXersesSidhwa,Director,HealthOffice,USAID/India

“TheenergybroughtinbytheTBChampionswhowonthefightagainstTBincludingMDRand

XDR-TBwaspalpable.TheTBresponseacrosstheworldismissingpassionandifwewanttoend

TBinourlifetime,weneedtheirlivedexperiences,theirpassionandtheirenergytotrulybend

thecurveandwinthefightagainstTB.”

- MsBlessinaKumar,TBAdvocateandleadfacilitatorattheworkshop

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BACKGROUNDANDRATIONALESouth-EastAsia bears almost half theworld’s TBburden,with close tohalf amillion annualdeaths due to TB. The region also bears one-third of the drug-resistant TB burden,with anestimated99,000cases. TBremainsagravepublichealthconcernintheregionandinIndia,whichhasthehighestTBburdenintheworld,withaquarterofcasesworldwide.GloballyandinSouth-EastAsia,theTBcrisesdemandsaconcertedandcomprehensiveresponsefrom both government and non-government actors including the private healthcare sector,business and industry leaders, civil society andmost of all, those directly affected by TB –patients,survivorsandtheirfamilies.However,responsestoTBhaveremainedtop-downandTBsurvivors,patientsandtheirfamilieshavehadlittleornoroletoplayinthefightagainstTB.TheirpotentialroleaspowerfuladvocateswiththecapacitytoincreasevisibilityforTB,improvepublic understanding of the disease and destigmatize the TB experience has been largelyignored.Asaresult,therearefewpersonalnarrativesinthepublicdomainandfewtrainedTBadvocatesandspokespersonswhocandemandchangestohowwerespondtoTB.InIndia,thelastfewyearshavewitnessedcapacitybuildingeffortsto identifyandsupportTB-affected communities to become effective advocates for TB. However, these efforts havehoweverremainedsporadicandthereisaneedtoestablishmechanismsthatofferlong-termsupport to TBadvocatesandchampions.InMay 2014, theWorldHealth Assembly passed a resolution approving the newpost-2015GlobalEndTBStrategy,whichifachieved,itstargetswillheraldanendtotheTBepidemicasaglobalthreat.Centraltothestrategyisacallforintegrated,patient-centeredcareandstrongcoalitionswithcivilsociety.ReflectiveoftheEndTBStrategyandinresponsetothehabituallyslowslidetowardsTBelimination,theStopTBPartnershipGlobalPlan2016-2020challengesthetraditional biomedical approaches to TB and identifies 8 fundamental changes thatmust beimplementedaspartoftheneededparadigmshifttoendTB.Oneofthoseshiftsiscommunity-andpatient-drivenapproaches.FollowingonfromthefirstglobalmeetingofpeopleaffectedbyTB inNovember2015 theStopTBPartnershiphasbeensupportinganumberof regionalworkshopstostrengthenthecapacityofTBactivistswhocanmeaningfullyengageinthefighttoendTBbothatregionalandnationallevels.InIndia,REACHiscurrentlyimplementingtheTBCalltoActionproject,withsupportfromUSAID,whichenvisagestransformingourapproachtoendingTB.AtthecoreoftheproposedchangeisensuringthatthoseaffectedbyTBareintegraltoourresponse,extendingbeyondtokenismtoinvolving affected communities. REACH envisages a long-term role for trained, committedadvocatesinpolicyadvocacy,overseeingprogramimplementation,communitymonitoringandaddressingstigma.Inthiscontext,REACHandtheStopTBPartnershipcametogether,withsupportfromUSAID,toorganize the Regional Capacity-Building Workshop for TB Survivors for the South-East Asiaregion.

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WORKSHOPOBJECTIVES

• ToidentifyandengageapoolofpotentialTBChampionsinIndiaandse lect SouthAs ian/South-East As iancountr ies

•TobuildthecapacityofpotentialTBChampionstoengageintheresponsetoTB•TosupportTBChampionstodevelopshort,powerfulvideo/writtentestimonialsfor

widedissemination•TodiscussandidentifykeyadvocacyopportunitiesforTBChampionsoverasix-month

periodItwasagreedthattheworkshopwouldfocusontwokeyintertwinedaspects:

• Knowledge-building: Supporting participants to contextualize their personalexperiences of TB in the broader Indian/Asian context, thereby identifying keyadvocacyfocusareas

• Skills-building: Helping participants develop advocacy and communication skills,specificallyfocusingontheabilitytotelltheirstoriesinanimpactfulmannerandidentifyandbuildeffectivepartnerships.

IDENTIFYINGPARTICIPANTS

A formal call for applications was issued on6 February 2017 and widely disseminated viaemail,TwitterandFacebook.Inresponse,atotalof 80 applications were received, and thecountry-wisebreakupwasasfollows:

TheapplicationswerereviewedbyateamfromREACHandtheStopTBPartnershipandinsomeinstances, skype calls were scheduled withshortlisted applicants. In all, over 60% ofapplicants were contacted via phone/skypeduringthereviewingprocess.

Country Applicationsreceived

Participantsselected

India 49 15Indonesia 14 4Philippines 8 5Bangladesh 4 3Vietnam 3 1Cambodia 2 2

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Challenges• Several applications were from individuals who were associated with organizations

workingonTBbutwerenotTBsurvivorsthemselves.AdecisionwastakeninconsultationwiththeStopTBPartnershiptorestrictparticipationtothoseindividualswhoseliveshadbeendirectlyaffectedbyTB.

• Among thosewhowere eligible for selection, languagewas a barrier. Given that theworkshopwould include participants from six countries, it was decided that sessionswouldbeheldinEnglishandthereforebasicfluencyandunderstandingofEnglishwasapre-requisiteforparticipationintheworkshop.Severalapplicants,whowereotherwiseeligible, did notmeet this criteria. REACHwill be inviting these applicants,whowereotherwiseeligible,toattendstate-levelworkshopsscheduledforlaterthisyear.

AnnexureAcontainsacompletelistofparticipants.WORKSHOPAGENDATheworkshopagendawasdevelopedthroughatwo-monthlongconsultativeprocess,involvingREACH, the Stop TB Partnership, USAID and workshop facilitators, with inputs from theparticipantsaswell.Allconfirmedparticipantsweresentalistofpossibletopicsforinclusionintheagendaandaskedtoidentifytheirpriorities.Sessions were designed to be as inclusive and interactive as possible, reflecting a two-waylearningprocess.Theemphasiswasonparticipatorylearningandonprovidingparticipantsandfacilitatorswithanopportunitytosharestorieswitheachother,ratherthanaone-waytransferofknowledgefromfacilitatortoparticipant.WorkshopfacilitatorsTheworkshopwasledbyMsBlessinaKumar,PublicHealthConsultantandPatientAdvocatewhohasworkedextensivelywithdisempoweredcommunitiesinIndia,Sudan,Indonesiaandothercountries. Shewas supported byMs Caoimhe Smythe from the Stop TB Partnership andMsAnupamaSrinivasanfromREACH.Severalexternalfacilitatorswereinvitedtopresentorleadsessionsattheworkshop:

• DrKSSachdeva,DeputyDirectorGeneral,NationalAIDSControlProgramme,MinistryofHealthandFamilyWelfare,GovernmentofIndia

• MsMercyAnnapoorni,BlossomTrustIndia• MsPrabhaMahesh,TBSurvivorandAdvocate• MsRheaLobo,TBSurvivorandAdvocate,JournalistandFilmmaker• DrIndiraBehera&MsSukritiChauhan,GlobalHealthStrategies• MrSubratMohanty,TheUnion

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Inkeepingwiththeworkshop’sfocusoncreatingpowerfulcommunicationmaterialsfeaturingtheparticipants,acomprehensivecommunicationsplanwasdeveloped.Thisincludedthehiringofaprofessionalphotographerandvideographertodocumenttheproceedingsoftheworkshopandtorecordindividualinterviewswithparticipants,whichwouldsubsequentlybeeditedintoshort,impactfulvideos.Informedconsentprocedureswerestrictlyfollowedandallparticipantswereallowedtoopt-outofthiscomponentoftheworkshop.AnnexureBincludesthefullagendaoftheworkshop.

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WORKSHOPSUMMARYDAY1:10AprilInauguralSessionTheworkshopbeganwithanaddressbyDrNaliniKrishnan,Director,REACH.Welcoming theparticipants,shepointedoutthesignificanceofagatheringofTBSurvivorsandChampionsandhowtheyhadthepotentialtoendthe‘silence’aroundTB.DrLucicaDitiu,ExecutiveDirector,Stop TB Partnership joined theworkshop via Skype and reiterated the Stop TB Partnership’scommitment tomeaningful community engagement andensuring that those affectedby thediseaseareatthecenterofourresponse.MsSarahRugnetta,ProgrammeandPolicyAdvisor,USAID, alsowelcomed theparticipants and endorsed theneed formore inclusive policy andprogrammedesignthatincorporatestheviewsofthoseaffectedbyTB.Participantsthenhadtheopportunitytointroducethemselvesandansweronequestion:“whyareyouhere?”.Theirresponsessetthetonefortheopen,forthrightandcandidconversationsthatwouldensueoverthenextfewdays.

Ms Anupama Srinivasan, Deputy Project Director, REACH presented the objectives of theworkshoptothegroupandsoughttheirfeedback,basedontheirexpectations.Sheexplainedthe agenda anddrewattention to theneed for activeparticipation throughout the sessions.MsBlessinaKumaroutlinedsomebasicrulesthatallparticipantsandfacilitatorswouldfollowduringtheworkshop,includingtheneedtolistentoeachother’sviews,nomatterhowdifferentwithanemphasisonrespectfuldialogue.

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Thefirstformalsessionoftheworkshopwas“WhowantstobeaTBMillionaire?”,aninteractivequizthataddressedthescienceofTB.Dividedinteams,participantswerequizzedonthebasicsofTBsymptoms,diagnosisandtreatment.ThequizwasfollowedbyapresentationontheGlobalandRegionalBurdenofTBbyMsKumar.ShealsoexplainedthebroadepidemiologyofTBintheregion,resourcegapstoaddresstheburdenofTBandtheEndTBStrategyanditscomponentstothegroup.ThissessionwasanopportunityfortheparticipantstocontextualizetheirpersonalexperiencesofTBwithinabroader,globalhealthperspective.It was circle time post-lunch. In this session titled “Your Story”, participants spoke freely,emotionallyandmovinglyofhowTBhadaffectedtheirlives.Formanyinthegroup,thiswasthefirsttimetheyhadopenlysharedtheirexperiencesandthefirsttimetheyheardhowTBhadaffectedthelivesofothers.

ThefinalsessionofthedaywasledbyMsGouri,GenderAdvisoratUSAID/India.MsGourispokeoftheneedtoincorporateagenderedapproachtoallaspectsofpublichealthincludingTBandthe importance of viewing advocacy efforts through a gender lens. Participants received aresource-guidetoengenderingadvocacyplans.

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DAY2:11AprilTheseconddayoftheworkshopbeganwithabriefrecapofthepreviousdaybyMsMildredPanchofromthePhilippines.ThiswasfollowedbyapresentationbyMsCaoimheSmythonthe‘paradigmshift’andtheincreasedprioritizationofworkrelatedtocommunities,keypopulations,humanrightsandgenderbytheStopTBPartnership.

Themainfocusofthedaywason“PathwaysthroughCare”,agroupworksessiondesignedtoseek inputs fromparticipants on the barriers they had faced at different stages through thetreatmentprocess.Sevenstagesweredefinedonchartpapersthatweredisplayedalongalongwall.Participantsweredividedintosevengroupsandeachgroupwasaskedtofocusonaspecificstage,althoughtheywerefreetogiveinputstotheotherstagesaswell.Thesevenstageswere:

• Developingsymptoms• Seekingcare• Gettingadiagnosis• Startingtreatment• Completingtreatment• Gettingcured• Gettingbackontrack

Inlessthanonehour,thechartpaperswerefilledwithpost-itnotesthatdescribedbothsystemicbarriers and individual barriers. The next two hours saw animated discussion, facilitated byMsBlessinaKumar,onbarrierstheyhadpersonallyexperienced,examplesofspecificmomentsintheirindividualpathwaystheywantedtoshareandcross-cuttingobstaclessuchasstigmaandlackofclearinformationthatpervadedeverystageoftheprocess.Severalparticipantsidentified

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thissessionasthemostrewardingandstimulatingsessionoftheworkshop–formanyofthem,ithadbeenthefirstopportunitytoreflectontheirindividualpathwaysandthefirsttimetheyhadbeenabletosharethechallengestheyhadfacedwithapeergroup.

AnnexureCpresentsasummaryanalysisofthebarriersidentifiedbyparticipantsandthiswillformthebasisforfurtherreflectionanddiscussion.

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MsBlessinaKumar facilitated the final sessionof theday, a formal introduction to thebasicprinciplesofadvocacy.Throughaninteractivepresentation,shedefinedthenatureofadvocacy,thepeopleandprocessesitusuallyinvolves,thedifferentkindsofadvocacyandsharedexamplesofadvocacyforTB.Shespokeoftheimportanceofcreatingdemandforhigh-qualityservicesandarights-basedapproachtoTB.Finally,sheencouragedparticipantstoconsidereachbarriertheyhadidentifiedintheprevioussessionasanadvocacyopportunity.

Theseconddayoftheworkshopendedat3pm,soastoprovideparticipantswithanopportunitytoexploreNewDelhithroughaguidedcitytour.Homework:ParticipantswereaskedtothinkaboutandidentifytheoneaspectofTBadvocacytheyfeltmostpassionatelyabout.Whatwastheoneissuetheywantedtocontinueworkingon?

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DAY3:12APRILThe third day of theworkshop beganwith a recap of the previous day byMs ParansarimitaWinarnifromIndonesia.Closeyoureyes.Tryandrememberyourfavouritestory,oneyoumayhaveheardasachild.Whotoldyouthestory?Wherewereyousittingwhenyouheardit?Whatclotheswereyouhearing?ThefirstsessionofthedaywasonPersonalNarrativesandEffectiveStorytellingbyMsAnupamaSrinivasanfromREACH.Thissessionfocusedontheimportanceofgoodstorytelling,whatagoodstorycanachieveandsomesimple,practicalwaystotellyourstoryeffectivelyandpowerfully.Participantsvolunteeredtotelltheirownstoriesusingthe‘storyspine’structurediscussedinthesessionandreceivedfeedbackfromtheirpeers.

Continuing with the focus on storytelling, thenextspeakerwasMsRheaLobo,journalistandfilmmaker, and a TB survivor herself.Ms LobospokeevocativelyofhowshehadbeenaffectedbyTB.ShedescribedhowshehadoriginallytoldherTBstory,severalyearsagoandcontrasteditwith how her storytelling has evolved. Shesharedtheshortfilmshehadmadeseveralyearsago (for a competition on TB organized byREACH) and critiqued it, along with theparticipants. Finally, Ms Lobo emphasized the

importanceofhonestyetsensitivestorytellingandurgedparticipantstoonlysharetheirstorieswhenandiftheyfeltcomfortable,andnotfeelcompelledtodosounderanycircumstances.Allparticipantswerethengiventimetobegintheprocessofdevelopingtheirpersonalnarratives.

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Eventhemostexperiencedadvocatewillconcurthatadvocatingtogovernmentrequiresspecialskills.Thiswasthefocusofthenextsession,ledbyDrKSSachdeva,DeputyDirectorGeneral,NationalAIDSControlProgramme,MinistryofHealthandFamilyWelfare,GovernmentofIndia.In his brief session, Dr Sachdeva addressed several key issues including the building andsustainingofcommunitynetworks,therelevanceofsocialprotectionschemesandtheneedforallstakeholderstocontributetothecreationofasupportiveenvironment.Inthepenultimatesessionoftheday,participantshadanopportunitytolearntaboutadvocatingto parliamentarians and other elected representatives. Facilitated by Dr Indira Behera andMsSukritiChauhanfromGlobalHealthStrategies,thesessionaddressedhowbesttoadvocateeffectivelytoparliamentarians,giventheirabilitytoinfluencehowprogrammesandpoliciesarebothdesignedandimplemented.

Thefinalsessionofthedaysawparticipantsbegintheprocessofdevelopingtheirindividualadvocacyplans,basedonaframeworkdevelopedbyREACH.Theframeworkrequiredthemtoclearlyidentify-

• Anadvocacygoal• Thestakeholderstheyneededtoaddress• Theactivitiestheyneededtoundertakeinordertoachievethegoal• Theirdesiredoranticipatedoutcomes• Theresources/supporttheywouldneed• Thechallengestheyanticipated

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Participants received support from each other and fromMs Kumar,Ms Annapoorni andMsMahesh,whoprovidedfeedbackandofferedsuggestionstostrengthentheirplans.

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DAY4:13APRILThefinaldayoftheworkshopbeganwithabriefrecapofthepreviousdaybyMrTiengfromCambodia.Inthefirstsessionoftheday,participantsgatheredinsmallgroupsforpeerreviewoftheirdraftadvocacyplans.Theyshared theirgoalsandactivitiesandsought inputs fromothersonhowrealistic theirplanswereandhowtheycouldbe improved.Someparticipantsalsoseizedtheopportunity topractice effective storytelling andget feedback from their peersonhow theycouldtelltheirstoriesmorepowerfully.

Networkbuildingwasthefocusofthenextsession,throughapaneldiscussionmoderatedbyMs Mona Balani and featuring Ms Paran from Indonesia, Ms Maricel from Philippines andMrSubratMohantyfromTheUnionSouth-EastAsiaOffice. Eachpanelistspokebrieflyaboutnetworkstheyhadbeenpartofandtheirrelativestrengthsandweaknesses.MrMohantydrewattentiontotheimmensevalueofapowerfulcommunitynetworkanditspotentialcontributionto the response toTB.The robustopendiscussion that followedaddresseda rangeof issuesincludingthereasonsforthefailureofnetworks,hownetworkscouldworkwiththegovernment(ratherthanasadversaries)andtheroleofthoseaffectedbyTBinnetwork-building.

Thefinalsessionoftheday,sawparticipantsreflectingontheworkshopandofferingvaluablefeedbacktoREACH.

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VALEDICTORYSESSIONThevaledictorysessionoftheworkshopwasheldatHotelAmbassadorinNewDelhi.Speaking at the valedictory session, Dr Sunil DKhaparde, Deputy Director General, TB, Central TBDivision, Ministry of Health and Family Welfare,Government of India said, “The voice of the survivorbecomesthevoiceofIndia.InTB,thereisadualstigma–oneisthediseaseitselfbuttheotherispoverty.ThisdualstigmacanbeexplainedbestbytheTBsurvivors.TheTBfightisnotfinished–butsurvivorswillhelpusgetthere.TBsurvivorsatdifferentlevelscanbegreatambassadorsandpassthemessageveryefficientlysothatTBloses,andweallwin”.Alsoaddressingthegroup,MrXersesSidhwa,DirectorofHealthatUSAID/India,said:“USAIDisproudtosupportthisworkshop,whichhelpsTBsurvivorstobecomepowerfulagentsofchangein India and other regional countries. It is critical that we actively engage TB champions indesigningandimplementingprogramsandadvocatingforpolicychange.TheirexperiencescanguidethewayforwardaswemovetowardaTB-freeIndiaandworld.”

DrKhapardeandMrSidhwapresentedcertificatestoalltheparticipants.Ashortvideoontheworkshop,developedby theStopTBPartnership,was screened.Fourparticipants–MrArunRana andMrDean Lewis from India,MsCherry Florida from thePhilippines andMs LusianaAprilawati from Indonesia shared their TB stories and reflected on their experience ofparticipatingintheworkshop.

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WORKSHOPOUTCOMESAdvocacyMentorshipProgrammeIn keepingwith theCall toActionproject’smandate to support a long-term role for trained,committedTBadvocates, REACH launchedanadvocacymentorshipprogrammeattheworkshop.Thisis opentoTBsurvivorsandthosewhohavebeendirectlyaffectedbythedisease,andthosewhoarekeentoassumetheroleofadvocates.Elevenofthe14participantsfromIndiasignedupfortheprogrammeandhaveeachbeensubsequentlylinkedtoamentor.Overthenextsixmonths,all11advocateswillbesupportedtodevelopandexecuteastrategicadvocacy plan, with clear goals, activities and intended outcomes. Mentors will provideindividual,customizedsupporttoeachadvocates/hementorsandactasaguideandsoundingboardtotheadvocatetoensurethats/heisabletocarryouttheiradvocacyeffectively.REACHiscommittedtoexpandingthismentorshipprogrammeandenvisagesarollingsystemwherethisyear’sadvocatesbecomementorsforthenextbatchandsoon,therebycontributingtoapoolofwell-trainedandeffectiveadvocatesinIndia.

TheTBChampionsVideoSeriesThe‘silence’aroundTBis,inpart,relatedtothepaucityofpublictestimonialsfromthosewhohavebeenaffectedbythedisease.Subsequently,akeyobjectiveoftheworkshopwastodevelopa series of short videos as well as photographs featuring workshop participants. Personalnarratives have the immense potential to both improve general awareness of TB anddestigmatizetheTBexperience.Inaddition,participantsfelttheprocessoftellingtheirstorieswouldbealearningexperienceforthemandwouldencouragethemtospeakmoreboldlyandopenly.

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Aseriesof12short filmshasbeendevelopedandwillbewidelydisseminated in thecomingmonths.Thisdocumentwillbeupdatedwiththevideolinkonceitisavailable.

NetworkFormationDuringtheworkshop,participantsfromIndiaheldseveraldiscussionsontheurgentneedforanetworkorcoalitionofthoseaffectedbyTB.ThishassinceresultedintheformationofTouchedbyTB:TheCoalitionofTBPeopleinIndia.Atthefirst‘official’meetingheldonthelastdayoftheworkshop,thegroupidentifiednationalcoordinatorsaswellasregionalfocalpoints.Inkeepingwiththeirself-identifiedmandatetosupporttheTBprogrammeinIndia,theyagreedonseveralkeyobjectives:• Tocreateandsustainacoordinatedandcapacitatednationalcoalitionofpeopleaffectedby

TB• Toensurethatthevoiceandthewisdomofthelivedexperienceofthecommunityisheard

acrossallplatformsincludinghealthpolicy,servicedeliveryandresourcedistribution• ToensuretreatmentliteracyandawarenessforpeoplelivingwithTB• TobuildthecapacityofTBadvocates• ToovercomebarrierstoTBtreatmentanddiagnostics• Toadvocateforacceptable,accessible,compassionate,comprehensive,rights-basedservices

forpeopleirrespectiveofageorgender• To network with and build linkages with other agencies and groups across the country,

regionallyandglobally• TonetworkwithandsupporttheMinistryofHealthandtheRNTCPanditspartnerstoachieve

thegoalofendingTBinIndiaby2025.

Announcingtheformallaunchof

OnepersondiesofTBinIndiaeverysingleminute.TBisasilentkillerthatispreventableandcurable,ifsocietyatlargecomestogethertofightit.

Keepingthisinmind,andtheurgentneedtomakeaffectedvoicesheardfromvariedgroupstofightTB,thecoalitionofTBpeopleinIndia-TouchedByTBwasformed.ThefirstmeetingtookplaceonApril13,2017inNewDelhiattheRegionalCapacityBuildingworkshopforTBSurvivorsorganizedbyREACH.TheparticipantswerefromdifferentstateswhorecognizedthegapofanationallevelbodyandexpressedtheurgentneedanddesiretoformanationalcoalitionofpeoplewhohavesurvivedTB.ThenetworkdecidedthatinlinewiththeRNTCPcommitment,thegoalofTouchedByTBis“TOWARDSATB-FREEINDIA”Tomeetthisgoal,followingcommitmentswerearticulatedwhichwilltranslateintotheaimsandobjectivesoftheCoalition:

• TocreateandsustainacoordinatedandcapacitatednationalcoalitionofpeopleaffectedbyTB

• Toensurethatthevoiceandthewisdomofthelivedexperienceofthecommunityisheardacrossallplatformsincludinghealthpolicy,servicedeliveryandresourcedistribution

• ToensuretreatmentliteracyandawarenessforpeoplelivingwithTB• TobuildthecapacityofTBadvocates• ToovercomebarrierstoTBtreatmentanddiagnostics• Toadvocateforacceptable,accessible,compassionate,comprehensive,rights-based

servicesforpeopleirrespectiveofageorgender• Tonetworkwithandbuildlinkageswithotheragenciesandgroupsacrossthecountry,

regionallyandglobally• TonetworkwithandsupporttheMinistryofHealthandtheRNTCPanditspartnersto

achievethegoalofendingTBinIndiaby2025

TheCoalitionhas5regionalfocalpoints:NorthEast–Mr.TilakMuntun East–Dr.SantoshKumarGiriNorth–Ms.MonaBalani West–Ms.PrabhaMaheshSouth–Mr.RamaPandian

AnyresidentofIndiawhohashadTBandwouldliketobepartoftheeffortstoendTB,pleaseemailusattouchedbytbindia@gmail.comtojointhemembership.BlessinaKumarandDeanLewisCoordinators

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FeedbackfromparticipantsOverall,28participantsofferedtheirfeedbackontheworkshop.

• On a scale of 1-5, 1 being the lowest and 5 the highest, 96% of participantsratedtheoverallcontentoftheworkshopas4andabove.

• Thefoursessionsparticipantsfoundmostusefulwere:o PathwaysthroughCareo DevelopingAdvocacyPlanso Networkbuilding:Opportunities&Challengeso PersonalNarratives:Anintroductiontostorytelling

• 97% of participants judged the workshop sessions to be highly participatoryinnatureandfelttheyhadadequateopportunitiestovoicetheiropinions.

• The majority of participants felt all the important TB issues had been addressedintheworkshop.

• Over65%ofparticipantsfelttheworkshophadexceededtheirexpectations.• Participants identified issues and topics they felt could have been included or

addressedingreaterdetailincluding:o Engagementoftheprivatesector;o Discussiononmedicalcurriculum;o Anenhancedfocusonnetwork-building;o Capacity-buildingforpolicyandprogrammeanalysis.

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ANNEXUREA:LISTOFPARTICIPANTSBangladesh

1. MrGolamMourtoza2. MrSKAnwarHossain3. MrIsbatAzmaryRifat

Vietnam

4. MsPhamThuyDuongIndonesia

5. MsParansarimitaWinarni6. MsLusianaAprilawati7. Mr.Erman8. Ms.FaridaAriKusuma

Philippines

9. MsMaricelRovillosBuen10. MrJohnStuartPancho11. MsMildredFernandoPancho12. MrMarkAethenGallanoAgana13. MsCherryRamosFlorida

Cambodia

14. Mr.ChhoeutSarun15. Mr.ChoeurnTieng

India

16. MrMutumTilakSingh,Manipur17. MrRamasamyPandian,Tamilnadu18. Mr.YogeshBalkrishnaBhalerao,Maharashtra19. Mr.CedricGregoryFernandes,Maharashtra20. MrDeanSavioPeterLewis,Maharashtra21. MsAlmaRam,Punjab22. DrReetaSahoo,Odisha23. Ms.AmritaLimbu,Tamilnadu24. Ms.MonaBalani,NewDelhi25. Mr.ArunSinghRana,NewDelhi26. Mr.AmoghMangalore,Maharashtra27. DrGopakumar,NewDelhi28. MrChinmayModi,NewDelhi29. MrFaizAnwar,Jharkhand30. DrSantoshGiri,WestBengal

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ANNEXUREB:WORKSHOPAGENDA

10APRIL,DAY1

Time SessionTitle SessionFacilitator/Speaker

08:45–09:15 Registration REACHteam

09:15–10:00 Welcome&OpeningRemarks

DrNaliniKrishnan,Director,REACHSarahRugnetta,ProgrammeandPolicyAdvisor,USAIDLucicaDitiu,ExecutiveDirector,StopTBPartnership

10:00–10:15 WorkshopOverview&Objectives AnupamaSrinivasan,REACH

10:15–12:45 ParticipatorySessionYourStory(BreakforTea/Coffeeduringthesession)

FacilitatedbyBlessinaKumar

12:45–13:45 Lunch

13:45–15:00 QuizBasicScienceofTB

BlessinaKumar

15:00–16:30 Presentation&DiscussionThebigpicture:AnoverviewofKeyIssuesinTB&TheGlobalPlantoEndTB(BreakforTea/Coffeeduringthesession)

BlessinaKumarCaoimheSmythe

16:30–17:00 OpendiscussionMyroleintheresponsetoTB

BlessinaKumarCaoimheSmythe

18:30onwards WelcomeDinner

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11APRIL,DAY2


09:00–09:15 RecapDay1andoutlineofDay2 Participants

09:15–10:30 GroupWorkPathwaysthroughCare

BlessinaKumarCaoimheSmytheAnupamaSrinivasan

10:30–10:45 MorningTea/Coffee

10:45–12:00 Presentation&DiscussionAdvocacyforTB:Firststeps

BlessinaKumar

12:00–13:30 GroupworkFromBarrierstoAdvocacy

13:30–14:30 Lunch

15:00onwards Afternoonfree

12APRIL,DAY3



09:15–11:30 Presentation&IndividualworkPersonalNarratives:Anintroductiontostorytelling

AnupamaSrinivasan,REACHRheaLobo,Journalist,Filmmaker&TBAdvocate


11:45-12:30 Presentation&DiscussionAdvocatingtoGovernment

DrKSSachdeva,MoHFW

12:30–13:15 Presentation&DiscussionAdvocatingtoelectedrepresentatives

IndiraBehera&SukritiChauhan,GlobalHealthStrategies

13:15–14:15 Lunch

14:15–17:00 InteractiveSessionIntroductiontoMentorshipProgrammeandDevelopingAdvocacyPlans

BlessinaKumarPrabhaMaheshMercyAnnapoorniREACHTeamStopTBTeam

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13APRIL,DAY4



09:15–10:45 PaneldiscussionNetwork-building:Opportunities&Challenges

ChairedbySubratMohanty,TheUnion


11:00–12:30 CircleTimeOurPlans

Allparticipantsandfacilitators

12:30–13:15 Lunch

13:45 DeparturefromTivoli

15:00–17:00 ValedictoryProgramme(AtHotelAmbassador,VivantabyTaj)

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Thisreportis,inpart,madepossiblebythesupportoftheAmericanPeoplethroughtheUnitedStatesAgencyforInternationalDevelopment(USAID).ThecontentsofthisreportarethesoleresponsibilityofREACHanddonotnecessarilyreflecttheviewsofUSAIDortheUnitedStatesGovernment.