Producedby
WHY:
ThisstorytellingeffortisfocusedfirstonAffordableCareAct(ACA)–relatedexperiences, includingaccesstocoverage,affordability,enrollment,andtheimpactofACAprotectionson individualsandfamilies,laterexpandingtoincludeMedicaid-relatedexperiencesreflectingon livedexperienceaswell.
Storieshelpdecision-makers,voters,andcommunitymembersunderstandhowhealthcare policiesshowupinreallife.Datacantelluswhatishappening,butstoriesexplainwhyit mattersandwhoisaffected.Whenpeoplesharetheirexperiences,theymakeabstract systemshumanandurgent.Thinkofitasengagementthroughperspective,asstorytelling:
Buildscommunityawarenessaroundsharedchallenges
Encouragespeopletoseethemselvesasstakeholders,notbystanders
Helpscommunitiesconnectpersonalexperiencestopublicdecisions
Strengthensparticipationinciviclife,includingvoting,advocacy,andlocalorganizing.
Healthcarepolicyisdeeplytiedtociviclife.Decisionsmadeattheballotbox, instatelegislatures,andbylocalofficialsdirectlyaffectaccesstocare, affordability,quality,anddignity.ACAandMedicaidstorieshelpshowhow thesedecisionsplayoutineverydaylifeandwhycommunityvoicesmatterin shapingthem.
Becauseofstructuralracisminemployment,incomeandwealth,immigrationpolicy,andhealth systems,communitiesofcoloraremorelikelytobeuninsuredorunderinsured,toliveinstates thathaverefusedtoexpandMedicaidanduseMedicaidandACAcoveragetobetterafford andaccesshealthcare,protecttheirfamilies,andstayfinanciallystable.Theyalsoexperience administrativebarriers,languageobstacles,unstableworkconditions,andimmigration-related fearthatmakeithardertoenrollinandkeepcoverage.
WHO:
Wearegatheringstoriesfrompeoplewhoaredirectlyandindirectlyimpactedbyhealthcare systems.
Atthisstage,weareprioritizingstoriesrelatedtoACAcoverageandprotections,withan intentionalexpansiontoMedicaidexperiencesinlate2026andearly2027.Thestoriesweare seekinginclude:
Individualsandfamiliesnavigatinghealthcareaccess,costs,quality,orcoverage
PeopleenrolledinACAmarketplaceplansoraffectedbyACAprotections
Caregiverssupportingchildren,elders,orlovedoneswithchronicconditions
Communitymembersacrossarangeofages,races,genders,abilities,andimmigration statuses
Peoplelivinginurban,rural,andsuburbancommunities.
Strongstorytellingreflectsthefulldiversityofthecommunity.Whenpossible,storiesshould includebasiccontextsuchas:
Agerangeorlifestage(youth,parent,elder,workingadult)
Genderidentity(ifthestorytellerchoosestoshare)
Familyrole(patient,caregiver,parent,grandparent)
Communityorregion.
Ifapersonisunableoruncomfortablesharingtheirstorydirectly,trustedstaffmembers, organizers,orserviceprovidersmaysharestoriesontheirbehalf,withconsent.Staffstories shouldcentertheindividualorfamily’sexperience,nottheorganization,andbetoldwithrespect, care,andaccuracy.
ThestorieswearecollectingcenterthelivedexperiencesofpeopleinIndigenous,Black,Latino, AsianAmerican,andNativeHawaiianandPacificIslandercommunitieswhoarebeingpushedout ofhealthcoverageorawayfromcarebytheso-called“Big,BeautifulBill”andotherpoliciesthat deepenpersistentracialhealthinequities.Theseharmsreflecttheintersectionofstructural racismwithescalatingattacksonimmigrants,andLGBTQ+communitieswhererace,immigration status,genderidentity,andsexualorientationcompoundexperiencesofexclusion,oppression, surveillance,anddenialofcare.
Weespeciallyencourageparticipationfrompeoplewhosevoicesareoftenleftoutofpublic conversations,includingthosemostaffectedbychangestoACAorMedicaidaccess. Participationisalwaysvoluntary,andstorytellersshouldhavecontroloverwhattheyshareand howtheirstoryisused.
HOW:Howwillpeople’sstoriesbeused,
andhowcantheysharethem?
HowStoriesWillBeUsed
Storiesmaybeusedto:
EducatecommunitymembersandthepublicaboutACAandMedicaidimpacts
Supportadvocacyandcivicengagementefforts
Informpolicymakersandcommunityleaders
Strengthenorganizing,outreach,andvotereducationwork
Amplifycommunityvoicesthroughevents,reports,ordigitalplatforms
Storieswillneverbeusedwithoutpermission.Storytellerswillbeinformedaboutwhereandhow theirstorymayappear.Keepinmind,wearealwaysmindfultoassurethisisasafespacefor voicestobeheard.
WaysPeopleCanShareTheirStories
Peoplecanchoosetheformatthatfeelsmostcomfortableandcreativeforthem.Options include:
Shortvideorecordings
Audioorvoicerecordings
Writtenstoriesorreflections
Poems,music,orspokenword
Visualartorphotography
Mixedmediacanincludecombinationsofaudio,visuals,text,music,orperformance.Thegoalis tohonorcreativityandculturalexpressionwhileliftingupACAand,infuturephases,Medicaidrelatedstories.
Wehaveaseparateresourceavailableforguidanceonrecordingeffectivevideos.Participants canchoosewhethertoappearoncamera,usevoiceonly,orremainanonymous.AppendixA.
Aboveall,storytellingshouldfeelrespectful,supportive,andaffirming.Thereisno“right”wayto tellastory.Whatmattersmostisauthenticityandconsent.
EthicalStoryCollection&Consent
Wearecommittedtoethicalstorytellingpracticesthatcenterthedignity,autonomy,andsafety ofeverystoryteller.Storiesbelongtotheindividualswhosharethem.Participationmustalways bevoluntary.Storytellershavetherighttodeclinetoanswerquestions,tosetboundariesaround whattheyshare,tochoosehowtheirnameoridentifyingdetailsareused,andtowithdrawtheir storypriortopublication.Wedonotexaggerate,reshape,orselectivelyeditstoriesinwaysthat distortlivedexperience.Ourroleistoamplifyvoices—notto“use”them.
Beforecollectingastory,organizationsmustclearlyexplainhowthestorymaybeused(e.g., reports,advocacymaterials,mediaoutreach,socialmedia,testimony,orpubliceducation). Storytellersshouldunderstandthatonceastoryispublishedpublicly,itmaybesharedbeyond ourdirectcontrol.Particularcareshouldbetakenwhenstoriesinvolvesensitiveinformation, includinghealthstatus,disability,immigrationstatus,benefitseligibility,orpotentialriskof retaliation.
Asamatterofpolicy,asignedconsentformisrequiredbeforeanystoryispublished,shared externally,orusedinadvocacyorcommunicationsmaterials.Organizationscollectingstories mustobtainandsecurelyretainasignedconsentformpriortosubmissionordistribution.The appropriateformtobeuseddependsontheintendeduseofthestory.
Thisapproachreflectswidelyrecognizedbestpracticesinethicalandtrauma-informed storytelling,whichemphasizeinformedconsent,transparency,safety,andrespectforstoryteller agency.
WHEN:
Whatstoriesshouldpeoplewatchfor overtime,asfederalattacksunfold?
StartinginJanuary2026,watchfor:
Peoplewhowerecoveredin2025byAffordableCareAct(ACA)insurance(sometimescalled, “Obamacare”)andexperiencedanyofthefollowingproblems:
Theywerechargedalotmoreinpremiumstokeepthesameinsurancein2026thattheyhad in2025.
TheylosthelppayingforACAinsurancebecauseoftheirimmigrationstatus,eventhough theyarelawfullypresentintheU.S.
Theyhadtosubmitexcessivepaperworktoenrollortokeeptheircoverage.
Theyworriedaboutpossibletaxpenaltiesiftheymistakenlyclaimedthewrongamountof assistance.
PeoplewhowereterminatedfromMedicarebecauseofimmigrationstatus,eventhoughtheyare lawfullypresentintheU.S.andhavepaidintothesystemforatleastadecade.
PeoplewhoarereluctanttoparticipateinhealthcoverageprogramslikeMedicaidortoseek medicalcare,fearingthatcouldplacethemindangerofdeportationordenialofafuturegreen card.
PeoplewhoareineligibleforMedicaidanduninsuredbecausetheirstatehasnotexpanded eligibility.
StartingaroundJuly2026,ifyourstatemakesMedicaidcutsinresponsetofederalcost pressures,watchforpeopleharmedbythosecuts.
StartinginOctober2026,watchforpeoplewhowereterminatedfromMedicaidbecauseof immigrationstatus,eventhoughtheyarelawfullypresentintheU.S.
StartinginJanuary2027,watchforpeoplewholostMedicaidbecauseeither:
Theydidn’tmeettheirstate’srequirementstoeitherdocumentworkorprovetheyareunable towork.
Thestaterequiredthemtoreestablisheligibilityafterjustsixmonthsofcoverage.
WHAT?Whatgroundshouldstorytellerstrytocover?Whatquestionsshouldtheytrytoanswer? Ingeneral,peopleneedtomakesuretheaudiencelearns
Whathappenedand
Howtheaffectedpeoplewerehurt
Beyondthat,itdependsonthespecificstory.Thetableprovidessomeexamplesofthe questionstothinkaboutintellingparticularstories.
APPENDIXA
FRAMINGCONTENTCAPTUREGUIDELINESFORVIDEORECORDINGINTERVIEWS RuleofThumbPrep:
1.Avoidnoisyenvironments.
2.Stableinternetconnection.
3.Testaudio.
4.Closeorpausenotifications.
5.Closeunusedapplications.
6.Useaneutral,tidybackground.
7.Dressincleanprofessionalorbusinesscasualclothing. 8.Nofilters.
APPENDIX B
WrittenStoryConsentForm
ConsenttoShareWrittenStory
Sharingyourstoryhelps[OrganizationName]educatedecision-makers,partners,andthepublic aboutissuesimpactingaccesstohealthcareandrelatedservices.Sharingyourstory—inyour wordsandyourvoice—isextremelyimportantinadvancingthiswork.
Bysigningbelow:
1.Youconsenttothedisclosureofthewrittenstorythat[OrganizationName]hasprepared basedonourinterviewwithyouandtheinformationandphotograph(s)youvoluntarilyshared withus(ifapplicable).
2.Youagreetoallow[OrganizationName]tosharethiswrittenstoryinwaysitdeterminesare helpfultoitsmissionandadvocacyefforts,including,butnotlimitedto,postingonits websiteandsocialmediaplatforms;inclusioninreports,factsheets,orotherpublications; communicationswithgovernmentofficials;mediaoutreach;publiceducationmaterials;and sharingwithadvocacypartnersandsupporters.
3.Youunderstandthatonceyourstoryissharedpublicly,itmayberepostedorredistributed byothersoutsidethecontrolof[OrganizationName]
4.Youacknowledgethatyouhavetherighttorequestthat[OrganizationName]stopsharing yourwrittenstoryatanytime.Uponreceivingyourrequest,[OrganizationName]willremove thestoryfromitswebsiteandsocialmediaplatformsandwillceasefurtherdistribution. However,youunderstandthatmaterialsalreadydistributedorsharedbythirdpartiesmay notbefullyretrievable.
5.Youunderstandthatsharingyourinformationandstorydoesnotcreateanattorney-client relationshipanddoesnotconstitutelegalrepresentationorlegaladvice.
6.Youacknowledgethatyouarevoluntarilyprovidingthisconsentandthatyouhavehadthe opportunitytoaskquestionsabouthowyourstorymaybeused.
Bythesignatureofitsrepresentativebelow,[OrganizationName]agrees:
1.Toshareyourwrittenstoryasdescribedinparagraph2above;and
2.Tostopsharingyourwrittenstoryifyourequestustodosoasspecifiedinparagraph4 above.Wewillremoveyourstoryfromourwebsite;nolongerpostitonoursocialmedia; andnolongershareitinanyoftheotherwaysdescribedabove.
Wesincerelythankyouforhelpingtomakeadifferenceinourcountry. Name(Printed):____________________________________________________________________________________
APPENDIXC
VideoStoryConsentForm
ConsenttoShareVideoStory
Sharingyourstoryhelps[OrganizationName]educatedecision-makers,partners,andthepublic aboutissuesimpactingaccesstohealthcareandrelatedservices.Sharingyourstory—inyour wordsandyourvoice—isextremelyimportantinadvancingthiswork.
Bysigningbelow:
1.Youconsenttotherecordinganddisclosureofthevideostorycreatedby[Organization Name],includingyourimage,voice,likeness,statements,andanyinformationorphotographs youvoluntarilysharedaspartofthisrecording.
2.Yougrant[OrganizationName]permissiontouse,reproduce,edit,publish,distribute,and publiclydisplaythevideostory,inwholeorinpart,inwaysitdeterminesarehelpfultoits missionandadvocacyefforts.Thisincludes,butisnotlimitedto,postingonwebsitesand socialmediaplatforms;inclusionindigitalorprintpublications;mediaoutreach;public educationmaterials;presentations;communicationswithgovernmentofficials;andsharing withadvocacypartnersandsupporters.
3.Youunderstandthatoncethevideostoryissharedpublicly,itmaybereposted,reshared,or redistributedbyothersoutsidethecontrolof[OrganizationName].
4.Youacknowledgethat[OrganizationName]retainsownershipofthefinalvideoproduct, includingcopyrightinterests.
5.Youhavetherighttorequestthat[OrganizationName]stopsharingyourvideostoryatany time.Uponreceivingyourrequest,[OrganizationName]willremovethevideofromits websiteandsocialmediaplatformsandwillceasefurtherdistribution.However,you understandthatcontentalreadydistributedorsharedbythirdpartiesmaynotbefully retrievable.
6.Youunderstandthatsharingyourinformationandstorydoesnotcreateanattorney-client relationshipanddoesnotconstitutelegalrepresentationorlegaladvice.
7.Youacknowledgethatyouarevoluntarilyprovidingthisconsentandthatyouhavehadthe opportunitytoaskquestionsabouthowyourvideomaybeused.
Bythesignatureofitsrepresentativebelow,[OrganizationName]agrees:
1.Toshareyourvideostoryasdescribedinparagraph2above;and
2.Tostopsharingyourvideostoryifyourequestustodosoasspecifiedinparagraph4above. Wewillremoveyourstoryfromourwebsite;nolongerpostitonoursocialmedia;andno longershareitinanyoftheotherwaysdescribedabove.
Name(Printed):
Howwouldyoulikeyourstoryattributed?
FullName
FirstNameOnly
Anonymous Other: ForOrganizationUseOnly
