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Whiletheutility,nobilityandbenefitsofthesemovementsareunquestionable,
theyalsoleadtoaparadoxicalsituation:insteadofcriticising,deconstructing,and
changingthesystemthattheyarediscontentwith,they-forlackofabetterop-
tion-mustactivelycontributetoitspropagationundermoral,publichealthand
bio-politicalimperatives.
ItisreasonabletohopethatoneoftheresultsoftheCOVID-19pandemiccan
betheaccumulationofasufcientcriticalmassofpatientadvocatesandactivists.
Tiscriticalmasscanorganisethemselveselectivelyenoughtochallengethesys-
temthathasconsistentlyputthe“market,”the“economy”andthe“healthofcom-
panies”(capital)beforethehealthofcitizens.Teactivetherapeuticcitizenshipof
HIVpatientsandtheirexperienceinthistypeofworkmayprovidegoodtemplates
fortheworkandchangesthatareneeded.
However,wecanalsoobservethebeneficialelectofself-empowermentthrough
learningandeducationintheprocessoftacklingstigmaanddiscriminationaswell
ascoping.TisexplainswhypatienteducationprogrammesliketheEuropeanPa-
tients)AcademyforTerapeuticInnovation(EUPATI)12orthePatientFocused
MedicinesDevelopment13initiativehavebeensosuccessful,andthisisalsowhyan
increasingnumberofpatientorganisationsinvestintheirownpatienteducation
programmes.
Empowerment,organisation,andself-education
Teconsciousacknowledgmentandincorporationofemotionsintothework,es-
peciallycapacity-buildingactivities,ofpatientgroupsmayolerasolutionformov-
ingawayfromthepressuresofmarket-mindedthinkingandtheinevitablelossof
coreobjectivesthataresacrificedtomoregrowthandprofit-making.Movingaway
frombusinessmetricsandfollowingastrategythatisdilerentfromthestandard
practicesandprocessesinacapitalisteconomymaybemorepurposefulandallow
morespaceandtimeforthetargetedprocessinganduseofemotionsinthework
thatpatientgroupsdo.
Embracingthetasksassignedtoandassumedbythemwithdignity,amoral
stanceandpoliticalsavvymayleadtodeeperreformsinhowhealthismanaged
acrosstheglobe.Inotherwords:theclassconsciousnessofpatientsmustbepropa-
gatedanddeveloped.ContrarytotheCartesiandivisionofbodyandreason,emo-
tionsandrationality,patientcommunitiesareinagoodpositiontoharnessthe
emotional“capital”andknowledgetheypossessbyblurringtherigidlinesbetween
12www.eupati.eu[accessedJanuary12th,2022].
13www.patientfocusedmedicine.org[accessedJanuary12th,2022].
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