The UC San Diego AntiViral Research Center sponsors weekly presentations on infectious diseases like HIV, HBV, HCV and TB. The goal is to provide current research, clinical practices and trends. This presentation is from their AIDS Clinical Rounds series and the slides are intended for educational purposes of the audience and may not be used without permission. The presentation is about risk and trauma in the lives of women living with HIV, including their experiences with diagnosis, relationships, and cultural invisibility within the HIV epidemic.

1. 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

2. !
Before!the!Bars:!!!Risk!and!
Trauma!in!the!Lives!of!
Women!Living!with!HIV!
• Kathleen!Grove,!Ph.D.!
!Palomar!College!!!!!
!kgrove@palomar.edu!
!

3. “"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.”"

4. Invisibility"matters:"
Outreach,*Preven.on,*
Tes.ng,*Diagnosis,*
Reten.on*in*Care*
“Risk”*and*“Trauma”*

5. “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)."

6. • 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"

7. 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)!

9. 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"

11. 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"

12. 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)"
"

14. 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"

16. “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"

17. “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!

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

19. Relationships"
“I!have!PTSD,!it’s!from!being!beat!up!from!exF
husbands.!!!!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)!
!

20. 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.!“!!!
!

21. 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!
!!

22. 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]”!
!!

23. 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)!

24. “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.”!

25. 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]!

26. “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"

27. 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.***

28. 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!

29. • 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"

31. 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.!!!
!!!!

32. !
• 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!

34. 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!

35. 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!!

36. 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)!

37. 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.!

38. 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.”!

39. 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.”!

40. • 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"

41. “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"

42. 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.”""

44. 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.”!

45. 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.”!

46. • IniHal!illness!
• MedicaHon!sideF
effects!
• Caring!for!your!child!!
• IsolaHon!and!need!
for!family!support!
• Kotex!
• Sharing!a!bathroom!
in!SecHon!8!housing!
Social"Class"and"HIV"

47. • 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"

48. 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.!
!