The UC San Diego AntiViral Research Center sponsors weekly presentations by infectious disease clinicians, physicians and researchers. The goal of these presentations is to provide the most current research, clinical practices and trends in HIV, HBV, HCV, TB and other infectious diseases of global significance. The slides from the AIDS Clinical Rounds presentation that you are about to view are intended for the educational purposes of our audience. They may not be used for other purposes without the presenter’s express permission.

AIDS CLINICAL ROUNDS

!Before!the!Bars:!!!Risk!and!Trauma!in!the!Lives!of!Women!Living!with!HIV!

•  Kathleen!Grove,!Ph.D.!!Palomar!College!!!!!!kgrove@palomar.edu!

!

“"This"is"a""picture"of"myself."You"would"look"at"this"picture"and"not"know"I"have"HIV,""it’s"hard"to"tell"who"has"it,""who"doesn’t"have"it,"so"that’s"why"I"took"that"one"of"myself.”"

Invisibility"matters:"Outreach,*Preven.on,*Tes.ng,*Diagnosis,*Reten.on*in*Care*

“Risk”*and*“Trauma”*

“We"are"still"the"ghosts"in"everybody’s"eyes”"she"said.""“It’s"still"a"secret.""We"are"like"that"nasty"little"secret"you"put"in"the"closet"and"don’t"say"anything"about.""Women,"we"are"out"there.""There"are"a"lot"of"women"out"there"who"are"positive.""But"we"are"never"seen."This"is"an"epidemic"and"it"isn’t"even"recognized"on"a"regular"basis.""How"do"they"expect"to"Ginally"cure"it?”"""(Crystal,"2011)."

•  PhotoFelicitaHon!Interviews!!with!!27!women!•  10!white,!5!African!American,!8!Hispanic/Mexican,!•  4!idenHfy!as!more!than!one!race/ethnicity!

•  Ranged!in!aged!from!24F67!

•  “Take!pictures!of!what!HIV/AIDS!means!in!your!life.!These!may!include!pictures!of!people,!places!and/or!things!that!represent!HIV/AIDS!or!which!tell!something!about!its!impact!on!your!life.”!

•  ParHcipant!ObservaHon!•  Women’s!conferences,!!!Weekend!retreats!2011F16,!!client!events!at!ChrisHe’s!Place…!

!

Qualitative"Data"

Cultural"Invisibility"• Women!are!not!part!of!the!HIV!epidemic!• Only!deviant!women!are!part!of!the!HIV!epidemic!(“risk!group”!thinking)!• ConflaHon!of!idenHfy!and!behavior!(self!and!partner)!• “I’m!a!nice!girl”!!!(I!should!be!safe!from!HIV)!•  !Partner?!!!!(He’s!not!an!IVDU…!though!I!walked!in!on!him!shooHng!up)!

This!is!the!medical!center!and!this!is!actually!where!I!found!out!I!was!HIV!posiHve.!!It!was!the!worst!day!of!my!life.!I!had!gone!for!my!annual!checkFup!and!I!said,!‘Let’s!just!throw!everything!in!there,!the!whole!STD,!HIV!thing’;!kind!of!as!a!second!thought.!I!wasn’t!expecHng!anything,!because'I’m'a'good'girl,*I!don’t!sleep!around.!You!know,!two!guys!within!the!last!two!years,!you!know?!!!They!came!in!and!said,!‘I’m!sorry,!you!are!HIV!posiHve’,!I!almost!fell!off!the!table,!I!just!dropped,!I!was!devastated.!Diagnosed!2010!!(Nicole)!

Diagnosis:""Cultural"Invisibility"

I!took!this!picture!because!I!felt!like!I!was!handed!a!death!sentence.!!These!are!the!handsF!handing!it!to!me.!!This!is!how!I!felt.!.!.!Aher!I!was!diagnosed,!I!had!to!educate!myself.!.!.!I!didn’t!know!anyone!else!with!HIV.!I!had!never!heard!much!about!it.!I!thought!you!couldn’t!touch!anyone!if!you!were!posiHve.!.!And!I!blame!doctors!in!part,!because!I!had!been!having!irregular!pap!smears!for!a!while.!!But!they!never!told!me!about!HIV!or!tested!me!because!I#didn’t#fit#the#profile.#(Vonda!Diagnosed!in!2003)##

Death"Sentence"

I"was"really"in"shock,"I"didn’t"know"anything"about"HIV,"I"was"really"uneducated.".".the""only"thing"on"my"mind"was"“Well,"I’m"going"to"die,"but"I"have"to"make"sure"I"make"as"much"money"as"I"can"before"I"die"for"[my]"kids.”"(Girst"CD"4"count"was"27)""

I!took!it!because,!Catrina!is!a!beauHful!lady!but!she!sHll!is!dead.!!I!considered!myself!beauHful!(laughs),!but!nothing!inside.!I!had!no!informaHon,!only!the!wrong!informaHon.!!I!thought!I!was!going!to!die!2!or!3!days!later.!!I!would!be!dead.!In!Mexico,!!we!use!the!word!“lepra”.!!Everybody!that!has!AIDS.!!It!is!death.!!!(Deanna,!LaHna.!!Diagnosed!in!2000)!

La"Catrina:"Beautiful"but"Dead"

“When!I!got!the!diagnosis,!this!is!how!I!felt,!dying,!incarcerated!with!my!own!self,!because!at!the!Hme!I!didn’t!have!informaHon,!I!saw!my!life!in!the!dark,!there!was!no!color!in!my!life.!!My!feelings!were!dead,!there!was!no!life!for!me”!!

Incarcerated"With"My"Own"Self"

“Tell"me"about"the"day"you"were"diagnosed”"""""

" ""“I!was!in!shock,!because!first!of!all,!I!didn’t!know!how!I!could!have!golen!it.!!I!was!really!confused,!and!nervous,!and!worried.!!And!the!Sgt.!Major!started!talking!about!what!the!doctor!was!going!to!help!me!with!and!I!heard!none!of!it.!!I!was!sHll!trying!to!wrap!my!head!around!what!this!even!meant.!!And!so!I!!was!thinking,!What!do!I!know!about!HIV?!!!I’m!going!to!die.!I!automaHcally!!started!thinking!of!my!kids.!!Are!they!going!to!die?!!Did!I!give!it!to!them?!Because!I!hug!them!and!kiss!them.!!I’m!from!Kansas!–!I!don’t!know!anything!about!this.”! ! !Evelyn.!Diagnosed!2007!

Shock"• Heterosexual!• NarraHve!…!“This!doesn’t!happen!to!people!like!me.”!!• What!about!your!partner(s)?!• What!does!“risk”!!mean?!

Relationships"“I!have!PTSD,!it’s!from!being!beat!up!from!exFhusbands.!!!!I’ve!been!in!a!few!abusive!relaHonships!and!things!like!that,!so.!!And!the!last!one,!we!were!both!kind!of!abusive!to!each!other.!!But!I’m!finally!kind!of!done!with!this!last!one,!and!it’s!taken!me!years!to!get!over!him.!And!I!just!went!up!and!saw!him.!.!!.!.!.!I’ll!never!know!who!I!got!it!from,!I!don’t!know!who!and!I’ll!never!know.!“!!• (Nicole)!

!

Former"Lover"""(Did"he"get""tested?)"

“He!said!he!did!but!I!don’t!know!anything!about!what!he!does,!you!know.!!!When!I!first!met!him!years!ago!I*was*sharing*him*with*8*other*women,*there*was*a*whole*bunch*of*us.**And*none*of*us*were*really*sleeping*with*anyone*else*but*him,*but*it*was*complicated.!.!.!But!he’s!6!foot!5!,!black!skin,!gorgeous!black!guy!with!dreads.!!You!know,!every!girl!in!town!is!interested!in!him!and!he’s!interested!in!me?!!!!So!there!is!a!lot!of!issues.!.!.!it’s!this!horrible!emoHonal!roller!coaster.!!Abusive!and!controlling.!!So,!I’ve!been!stuck!in!that.!“!!!!!

Boyfriend"“I!was!daHng!him!for!8!years!and!he!was!cheaHng!on!me.!!He!was!always!!sick!but!I!didn’t!know,!I!was!the!person!who!would!rush!him!to!the!hospital,!but!didn’t!know!what!was!wrong.!!I!was!not!a!person!who!snooped!through!people’s!stuff.!!!!I!would!never!know!to!look!at!someone’s!medicaHon!and!even!if!I!did!I!!wouldn’t!know!what!it!was,!and!I!would!not!have!looked!up![the!medicaHon]!at!that!Hme.!!I!was!in!my!twenHes.”!!!!Vonda!!!

So"you"just"thought"he"was"sick?"“I!thought!he!had!ulcers.!.!.!!!

(looking!back)!!!He!had!a!whole!lot!of!risk!factors.!!He!had!been!in!prison,!he!had!been!an!injecHon!drug!user,!his!best!friend!and!roommate!was!gay,!they!may!have!been!involved!with!each!other.!!!He!cheated!on!me!with!my!best!friend.!

I!don’t!want!anyone!blaming.!!I!think!the!blame!is!on!me.!!I!should!have!used!protecHon,!I!should!have!been!educated,!even!though!a!lot!of!women!aren’t.!!!!

And!I!was!really!good!friends!with!the!roommate!and!he!would!call!me!and!say,!“Help,!he!needs!to!go!to!the!hospital,!come!take!him”!!And!so!I!would!run!over!there!and!take!him!to!the!hospital,!but!because!of!HIPAA!laws,!I!could!be!right!there!and!they!won’t!say![why!he!is!sick]”!!!

AIDS"Walk" “This!was!taken!at!this!year’s!AIDS!walk!and!this!picture!is!really!important!to!me,!!this!was!the!fist!year!I!had!ever!walked!in!AIDS!walk!and!I!had!my!whole!family!with!me,!this!was!(pause)!the!first!like!coming!out!for!me!and!my!family!as!a!whole.!!Our!first!Hme,!all!acknowledging!we!have!this.!.!.!It!was!the!first!Hme!my!husband!had!anything!to!do!with!it.”!!(Evelyn)!

“Risk”"and"“Signs”"“I!saw!signs!that!my!husbands!was,!uh,!how!do!I!explain!it,!curious,!or!wanHng!to!do!things!with!people!who!were!the!same!sex,!things!like!that..!.!Because!I!saw!emails!from!people!!who!ended!up!being!guys,!when!I!called!them.!!!I!caught!him!one!night!looking!at!photos!of!transgendered!women.!All!this!happened!before!we!got!married.!.!.!But!I!!put!all!this!aside,!because!that!was!the!only!problem.!!I!was!seeing!these!things,!but!he!wasn’t!going!anywhere!or!doing!anything,!so!all!it!was!was!the!email!stuff,!the!internet!stuff.!.!.!Otherwise!he!was!perfect.!!!So!I!just!ignored!all!that.”!

Olga…"gradual"recognition"of"“risk”"• Marries!at!age!18!• Physical!and!sexual!abuse!!“make!it!work”!• Ramon!always!Hred!• Ramon!is!not!working,!but!has!spending!money!• Ramon!arrested…!drugs!TV!show!about!AIDS!in!Africa!“When!I!saw![the!boy!on!TV]!I!thought!about!my!husbandF!the!boys!looks!like!my!husband,!skinny,!with!the!cheeks!like!this!(she!sucks!in!her!cheeks).!!When!I!saw!that,!I!started!to!open!my!eyes![about!my!husband]!

“I!want!the!test!for!AIDS!and!she![the!recepHonist]!told!me!‘Oh,!you!have!a!lot!of!sex!with!lots!of!men?’!!I!say!‘No’!and!she!says,!‘Oh,!you!use!drugs?’!and!I!say!‘No’.!!She!says,!‘Your!husband!have!sex!with!other!men?’!!I!say!‘No’.!!And!she!says,!‘It’s!unlikely!you!have!HIV’.!!!I!called!another!clinic!and!they!asked!me!the!same!quesHons.!“!!(Olga,!Hispanic,!diagnosed!in!2007)!!

Persistence"of"“Risk"Group”"IdentiGication"and"Stereotypes"

Am"I"The"Only"One?"This!picture!is!the!dancing!with!hope!logo!that!is!important!to!me!because!that!was!the!first!Hme!I!had!ever!met!another!woman!living!with!HIV.!!!So!this!was!like!the!turning!point!in!my!life!with!my!HIV!and!my!status.!!I!had!gone!in!to!get!my!blood!drawn!at!the!VA,!and!every!Hme!I!was!the!only!woman!there…!And!I!always!asked,!“Am!I!the!only!one”.!!And!they!said,!“Yes,!only!you.”!!They!had!flyers!and!brochures,!but!everything!was!homosexual,!gay/lesbian,!men.!.!.!I!never!saw!one!thing!for!a!woman,!in!the!booklets,!flyers,!everything*was*men.***

What"we"say…"what"they"hear"“No!one!in!my!family!has!ever!had!HIV.”!!“I!come!from!a!small!community!where!people!know!who!have!slept!with!who.”!“By!asking!to!be!tested,!I!feel!I!am!puqng!myself!in!the!groups!of!people!who!contracted!AIDS!and!I!am!not!that!type!of!person.!“I!have!golen!an!HIV!test.!I!was!in!an!abusive!marriage,!my!husband!used!IV!drugs!as!well!as!cheated!on!me.!I!was!very!scared!to!get!tested!for!HIV.!The!only!reason!I!forced!myself!to!get!tested!was!because!I!was!pregnant.”!“But!I!would!never!have!sex!with!someone!I!do!not!trust,!obviously.”!!

Risk*Landscape…!a!Broader!Conceptual!Tool!

•  This!is!another!thing!that!represents!HIV,!the!pills!I!have!to!take.!!I’m!very!grateful!and!lucky!that!science,!research,!and!pharmaceuHcals!have!come!a!long!way.!!I!only!have!to!take!pills!once!a!day,!I!have!to!take!5!of!them.!!That’s!part!of!living!with!HIV,!taking!medicaHons!to!stay!healthy.!!

Good"news"

What!isn’t!working?!!• 11%!of!infected!women!do!not!know!they!are!HIVFposiHve!• NaHonwide,!only!57%!of!diagnosed!women!are!retained!in!care.!!!!!•  In!San!Diego,!only!42.8%!of!diagnosed!women!are!retained!in!care.!!!

!!!!

!

• Examines*the*health*and*social*effects*of*ACEs*throughout*the*lifespan*among*17,421*members*!of*the*Kaiser*Health*Plan*in*San*Diego*County**!

•  Vincent!Felliq!MD!and!Robert!Anda!MD!

Trauma*and*Women**Living*with*HIV*Trauma!and!PTSD!impact!women!living!with!HIV!at!disproporHonate!rates!when!compared!to!the!general!populaHon!of!women.!

•  Rate!of!recent!PTSD!is!30%**(5X!rate!recent!PTSD!in!general!populaHon)!

•  Rate!of!inHmate!partner!violence!experienced!by!HIVFposiHve!women!is!55.3%*(more!than!2X!the!naHonal!rate!among!women)!

•  Childhood!sexual!abuse!occurs!at!an!esHmated!rate!of!39.3%!and!childhood!physical!abuse!at!an!esHmated!rate!of!42.7%!(2X!!the!naHonal!rate!among!women)!!

•  Rate!of!lifeHme!sexual!abuse!61.1%!!

•  Rate!of!lifeHme!physical!abuse!72.1%!!

•  LifeHme!trauma!rate!71.8%* MachHnger!et!al.,!2012!

Trauma*and*Women**Living*with*HIV*Trauma*and*PTSD*predict*poorer*HIVYrelated*health*outcomes*such*as:*

• Poor!healthFrelated!quality!of!life!• Higher!rates!of!medicaHon!nonFadherence!and!anHFretroviral!failure!• Higher!mortality!rates!• Higher!rates!of!transmissionFrisk!behaviors!

MachHnger!et!al.,!2012!!

Trauma"""•  Trauma!Informed!!primary!care!

•  Two!issues:!!Violence!against!women!and!HIV/AIDS!

•  71%!(my!sample)!have!been!vicHms!of!physical!violence,!rape,!molestaHon!•  (55%!of!women!with!HIV!in!naHonal!surveys)!•  (26%!of!women!in!the!United!States)!

Evelyn"• PTSD!diagnosis!• Her!mother!almost!beaten!to!death!by!father!when!she!was!an!infant.!• Homeless!for!two!years!during!her!childhood.!• Molested!by!mother’s!boyfriend!when!she!was!4.!• Date!rape!at!age!16.!• Married!at!age!18.!!Physically!abused.!• Divorced!• Raped!while!serving!in!the!military!age!21.!• Meets!her!current!husband!shortly!aher!that.!• Diagnosed!with!HIV!on!her!25th!birthday.!

Tell"me"about"the"day"you"were"diagnosed"•  “I!went!in!for!the!test!at!a!clinic.!!!I!was!numb,!but!there!were!more!serious!things!like!being!beat!up,!you!know,!like!him!hiqng!me!the!day!before!I!got!the!news!in!front!of!the!kids,!in!the!middle!of!the!street.!!Then!I!was!homeless,!sleeping!in!my!car,!pregnant!and!not!eaHng!well.!!I!felt!so!betrayed,!so!unloved!and!hurt!by!everything.!!!!HIV!was!just!one!more!thing.”!

Shanice" •  “This!is!my!life!day!to!day.!.!.!It’s!my!room,!it’s!a!mess.!!And!someHmes!my!life!is!a!mess.!Especially!when!I’m!geqng!over!an!illness!or!just!life!in!!general,!it’s!someHmes!like!this,!crap!all!over!the!place,!I!can’t!get!a!fix!on!one!parHcular!thing,!it’s!just!a!mess.!!And!I!feel!like!this,!“damn,!where’s!the!light,!where!is!it?”!!Some!days!it’s!just!hard,!and!some!days!turn!into!some!weeks,!you!know?!!.!.!.!People!think!that!if!you!have!HIV!and!you!take!your!medicine,!all!is!well.!.!.!They!don’t!realize!that!your!body!is!your!body!and!stuff!happens.!!!SomeHmes,!life!is!just!overwhelming.”!

•  Poor!physical!and!mental!health!•  Economic!hopelessness!•  Lack!of!coordinaHon!between!medical!care!and!related!services!like!substance!abuse!rehabilitaHon!•  Language!barriers!•  Lack!of!trauma!informed!care!•  Lack!of!mental!health!services!•  Homelessness!•  Food!Insecurity!•  DomesHc!Violence!•  Caretaking!!

Falling"Out"Of"Care"

“This!is!ChrisHe’s!Place.!!The!main!reason!I!took!this!(photograph)!was!that!it!prely!much!saved!my!life!when!I!got!diagnosed.!!If!I!hadn’t!of!found!them,!I!don’t!know!where!I!would!be!right!now.!!!They!gave!me!support,!reinforcement!that!I!wasn’t!going!to!die,!and!lots!of!informaHon.!They!made!me!feel!like!I!belonged!at!a!Hme!when!I!felt!that!I!didn’t!belong!anywhere.”!!

Support"Groups"

Berta"recalled"her"fear"at"going"to"her"Girst"support"group."”Terry"met"me"at"the"door"and"welcomed"me;"‘come"in"and"make"yourself"comfortable,"we"have"a"big"plate"of"mufGins"in"the"living"room.’"I"was"young"and"scared"and"that’s"where"my"life"changed…"somebody"told"me"that"I"was"worth"taking"care"of.”""

Stable"Housing"“This!is!the!house!that!I!stay!in.!!!I!had!no!source!of!income,!living!on!the!street,!my!case!manager!got!me!enrolled!in!the!program.!!You!have!to!be!HIV!posiHve,!they!give!you!18!months.!!You!pay!part!of!your!income!and!they!require!you!to!get!a!savings!plan.!!Their!main!goal!is!to!help!you!save!money!and!become!independent!and!stable.”!

Transportation"•  “If!it!wasn’t!for!the!train,!I!wouldn’t!be!able!to!get!to!my!doctor’s!appointments,!it’s!kind!of!like!my!lifeline.!!I!was!going!to!take!pictures!of!the!bus!too.!!This!is!the!only!way!I!can!get!anywhere,!to!work,!to!see!my!parents.”!

• IniHal!illness!• MedicaHon!sideFeffects!• Caring!for!your!child!!• IsolaHon!and!need!for!family!support!• Kotex!• Sharing!a!bathroom!in!SecHon!8!housing!

Social"Class"and"HIV"

•  This!is!my!house,!I!have!a!place!to!lay!my!head!now.!!I!was!on!the!street,!off!and!on,!since!1995.!!This!is!my!serene!place,!this!is!my!sanity,!where!I!can!get!out,!my!place!to!talk!to!God,!to!journal.!!I!have!a!place!to!lay!my!head!that!is!safe!now.!

A"safe"place"

This"is"my"life"I’m!trying!to!work!through!this!stuff.!I’m!trying!to!be!a!beler!person,!a!beler!Debbie,!you!know?!.!.!.I!want!to!be!healthier,!I!mean,!there!is!a!lot!of!stuff,!I!want.*A!lot!of!the!women!that!have!HIV!have!anger!–!the!anger!thing!that!women!have!in!common!is!some!sort!of!trauma.!.!.![We]!feel!worthless,!no!value,!and!we!accept!things!and!behaviors.!We!selle!because!we!feel!we!don’t!deserve!beler.!!