Community Dialogues Report Bolivia

Review of Access to Treatment, UN Women

Community dialogues with women living with HIV in Bolivia
Information collected by, and report prepared by Gracia Violeta Ross
graciavioleta@hotmail.com
1

Background
The Community Dialogues with women living with HIV were
conducted in Bolivia at the invitation of Salamander Trust, as part of
a Global Review of Access for Women Living with HIV
commissioned by UN Women and conducted by Athena, AVAC and
Salamander Trust, with the aim of contributing to the global debate
on barriers of access to treatment for women living with HIV.
In 2013, Bolivia became a Middle Income Country with a Gross
Domestic Product of USD 32 million1 and a population of
10,671,2002.
According to the National STD / HIV / AIDS Programme34, from 1984
to September 2014, 12,480 cases were reported, of which 72% have
been identified as heterosexual, 15% as MSM (Men who have Sex
with Men) 62% are aged 15 to 34 years. For every 10 women living
with HIV there are 17 men. Cases of women have increased since
2007, when a resolution of the Ministry of Health made mandatory
HIV testing for all pregnant women.
The HIV prevalence data reported by the National STD / HIV / AIDS
programme indicate that 0.15% corresponds to the general
population, 0.20% for pregnant women, 0.57% sex workers, 11.60 %
MSM and 19.70% LGB and transgender women.
The distribution of cases by department indicates that 52% are
located in Santa Cruz, 20% in Cochabamba % and 17% in La Paz.
This distribution of cases was used as justification for the selection
of cities in which the Community Dialogues were developed.
In late 2013, the National STD / HIV / AIDS programme reported5 the
existence of 2,468 people living with HIV receive antiretroviral
treatment regularly. Data access to antiretroviral drugs (ARVs) is
1 http://www.la-razon.com/economia/Cifra-Evo-Bolivia-colchonfinanciero_0_2178982127.html
2 http://www.datosmacro.com/demografia/poblacion/bolivia
3 http://eju.tv/2014/12/los-casos-de-vih-sida-en-bolivia-se-elevan-en-25/
4 Meeting of NAC, 24.11.2014, La Paz.

available only since 2009. 70% are on first line antiretroviral

therapy and 16% on second-line antiretroviral therapy.
Funding for most activities on HIV prevention and care comes from
the grant from the Global Fund to Fight HIV, Tuberculosis and
Malaria, currently running Round 9 of financing, ending in 2015.
Meanwhile, Brazil donates first line antiretroviral drugs.
The resources of the General Treasury of the Nation (TGN) for
activities of care and HIV prevention in Bolivia amounted to 34%
(5.4 million Bolivianos in 2014) of the total financing required.
There are 9 CDVIRS, (Departmental Monitoring and Reference
Centres for HIV), one for each department of Bolivia. These CDVIRs
are dependent on the SEDES (Departmental Health Services).
Specific activities for women in relation to primary prevention:

Semester HIV tests and compulsory for Sex Workers including

transgender women
Mandatory offering of HIV testing to all pregnant women.
In relation to care, specific activities for women living with HIV are:

Provision of planned caesarean for pregnant women living with HIV.

Provision of post exposure prophylaxis with ARV medication for
children born to women living with HIV.
Provision of breast milk substitute for children born to women living
with HIV (6 month of breast milk substitute, 6 months regular milk).
After monitoring of the Viral Load and CD4, women who meet the
requirement of CD4 of 500 or less, are referred to treatment
services.
Antiretroviral drug of choice is the TEL (Tenofovir, Efavirenz,
Lamivudine) as indicated by the WHIO guidelines and the National
ARV Guidelines for Bolivia
Family planning services for women living with HIV does not exist,
but if a woman requires this then access will be given. The way
these services are provided in reality varies from one health centre
to another, it depends on the availability of training for health
personnel, awareness and ideology. Many women living with HIV
members of REDBOL (Bolivian Network of People Living with HIV and
AIDS) during the 14 years of existence of this organization, reported
experiencing pressure from health workers to abort or have tubal
ligations (sterilisation) performed, especially if they are young.
There are no activities that empower women to prevent HIV
acquisition, let alone activities are linked to the prevention of
gender-based violence.

Care services provided to women living with HIV are no different

than those provided to all people living with HIV, when a woman
living with HIV concludes childbirth; she becomes just one more
case.
2

METHODOLOGY
In Bolivia 3 Community Dialogues were held with women living with
HIV, according to the following table, organized by chronology and
activities in each city:
City

Date

Place

Cochabamb 22 Nov 2014 Cafe Vanilla

a
(closed space)
Cochabamb 27-29
a
November
2014
Santa Cruz 25-26
November
2014
La Paz and 05 December
El Alto
2014

Hotel Ideal

Activity

No.
Participant
s
Community Dialogue, 15
Women from
Cochabamba
Interview with woman One
from another city

Redvihda
Foundation
Offices
ASUNCAMIs
offices

Community Dialogue,
Women from Santa
Cruz
Community Dialogue,
Women from La Paz
and El Alto
La Paz
08 December Caf Brosso
Interview with
2014
pregnant woman
Cochabamb 12 December Heladera Gracia Interview with Young
a
2014
woman born with HIV
La Paz
12 December Caf Brosso
Interview with trans
2014
woman

13

12

One
One
One

The questions were developed by Salamander Trust, if necessary,

further explanations were given. The dialogues were facilitated by
Violeta Ross supported by a local co-facilitator in each department.
Dialogues were recorded in audio and a written record of the
interventions of the participants was taken. No photos were taken in
any of the Dialogues because the groups included women who were
recently diagnosed.
The Community Dialogues were held in offices of organizations of
people living with HIV or in a cafe appropriate for this type of
meeting.

Selection criteria of participants

The co-facilitators were asked to convene a group of 10-15 people
emphasizing that 10 was the ideal number requested. It was also
requested that the greatest possible diversity of women would be
tried to achieve, including women who have survived Tuberculosis,
transgender women and young women.
The selection of women for individual interviews was based on time
availability and diversity of their experiences.
The women were selected from the database of people living with
HIV who regularly attend CDVIRs. This means, the women of the
Dialogues are women receiving antiretroviral treatment in state care
centers that work with local funding and in most cases international
funding.
Limitations
Because of the stigma and discrimination it was not possible to
summon women who do not attend Mutual support Groups which
are organized regularly with funding from the Global Fund.

Ethical aspects
Women received reimbursement for local transport for 30 Bs.
(Bolivianos) equivalents to $4.35 USD.
The groups were asked about the possibility of taking pictures, most
disagreed, having been informed that the photos could be
published; it was decided in coordination with the co-facilitators and
women participants not to take pictures in any of the dialogues.
Names and some details have been changed in order to protect the
identity of the participants.

Main topics of the Community Dialogues

A summary of the main topics discussed in Community Dialogues,
as were discussed thoroughly by women, making a comparison
between the three dialogues ago.

Overall experience in care services

Cochabamba
Santa Cruz

La Paz and El Alto5

5 La Paz and El Alto are two cities that work very closely together. El Alto is the youngest and fastest growing city in Bolivia, this city is
typical residence of migrants from rural populations, rates of poverty and vulnerability is greater in this city. La Paz is the political capital
of Bolivia, shows why some economic growth and existence of mass media reporting throughout the country.

The focus is not so good, sex

workers have priority over
us, they themselves look
down on us and generally
people look at us badly.

There are no Pap smear

services, they only give us
medicines. Nor is there
treatment for Opportunistic
Infections.

The opening times are not

favourable; the space is
small and stigmatized.

There are no dental services.

We are talking just about

collecting medications not
about care.
There is abuse by nurses and
doctors. Although there are
two doctors, we always have
to wait for a long time, we
always have to wait until
they are ready to see us.

For my daughter living with HIV, the

nurses have treated her badly, they have
been indifferent to the case of my
daughter, I spent desperate times in the
Children's Hospital, they called us
infectious AIDS carriers [sidosos
infecciosos] (cries).

The Nurses come late.

Three months ago I had a cold, I was

very sick when I went to the Hospital de
I am in La Ramada centre,
Clinicas, agonizing, but there was no
they have waited for me to be stretcher. There were many students,
almost dead before seeing me, among them they asked, "Where did you
there is too much paperwork. catch it?"

There are women who speak Aymara6

[and not Spanish], who can not complain,
there is discrimination against these
women because of their traditional dress,
they are afraid, they are mistreated
because they come from rural areas,
If we are late, we are sent to Dont even mention
"your turn has already passed" they say
the psychologist.
complementary or alternative to them. These women have no home in
therapies, they just to give us La Paz, they say that I have understood
You have to make
appointments, they say "come
back tomorrow", and again I
have to ask permission from
my work.

6 Indigenous language of Peru and Bolivia

The service is overloaded.

the minimum necessary.

for fear of the doctor, but really have not
Massage? That would be nice! understood. In rural areas there is still
There is a gynaecologist but
taboo about HIV in the communities they
also it is for sex workers and
do community justice7 if they learn about
they occupy most of the time
someones diagnosis.
of this health personnel, so
we have to wait until they
Hospitals in El Alto do not use biosecurity
finish. The priority of CDVIRs
[universal precautions] measures.
are sex workers, not us.
Nurses say "why didnt they tell me that
you have AIDS?" they almost went mad
when they found out that my friend had
HIV.

Access to counseling
Cochabamba
There is reference to the
Mutual Support Groups (GAMGrupos de Ayuda Mutua), but
some doctors believe that
people living with HIV are
their property. Peer
counsellors do not reach
hospitals, where there is

Santa Cruz
I received counselling only
once when I did the test, after
that never again, after
diagnosis peer counsellors
take over.
Now there are agreements
with CDVIRs so that the peer

La Paz and El Alto

Women are afraid to go to the
psychologist, they prefer to go to the peer
counsellor.
The peer counsellor can step into the
shoes of a woman living with HIV because
she also lives it.

7 The Community Justice system authorizes a community to perform justice by themselves; it is a costume that
became popular with thieves, if the police do not show up, the community can and sometimes do kill thieves. La
Paz, El Alto, Cochabamba and Santa Cruz are well known for their attempts of performing community justice.

more discrimination, nor to

the maternity wards/
hospitals.

counsellors can work inside,

the PEP8 are no longer seen
as a threat to the
psychologist.
A PEP not keep up with the
demand of many people.

Basic needs of daily life:

Food, housing and employment
Cochabamba
Santa Cruz
Women living with HIV do not Women with HIV have no
have stable jobs, do not earn strength like before to work
even the minimum wage.
eight hours, really we are just
surviving.
Many women are widows with
children, but with temporary Women are heads of
jobs.
households, working, their
bosses do tests and discover
The basis of this reality is
they are HIV positive, then
poverty. Women earn little
they dont promote them or
and then after paying their
they throw them out.
rent can no longer afford
good nutrition for example to If we had the capital we could
buy fruit.
start our own business.
8 PEP = peer educator.

La Paz and El Alto

We have access to drinking water but we
have to pay for it.
Most women of El Alto, are poor.
Food is a subject that is complicated by
economic and cultural, we dont know
how to eat healthily and it is certainly
more expensive.
When children study, have to stretch our
available resources like chewing gum, but
God helps us.

The children are a cost in the

economy, they need to study
materials should drink milk
but it is expensive and it is
going to go up [in price].

If my son came to live with

me, they will put my rent up.
For jobs they ask for a lot of
requirements, some include
HIV testing.

Women do not have access to

stable, jobs if you have more
than 40 years old it is even
worse. If you have a bank
loan, you'll pay a lot of
interests.
Every woman has minimally
two children.

I have spent days when one day have

resources to eat and another day I dont.
There is no state support for women who
are living on the streets.
Most of us live in our parents houses, we
dont have our own houses.
The rent is the biggest expense, secondly
the children and all their costs and so
food is last.
I'm always looking for casual work to help
my economy.

Our nutrition is precarious,

not optimal.

Other health issues and costs

Cochabamba
Santa Cruz
There is no support for other The CDVIRS only give care for
health issues, if you have
HIV, STIs, not even
another health problem, you opportunistic infections.
should pay for it.
I'm afraid to inform about my

La Paz and El Alto

The CDVIR are the only centres that serve
us but they only look at the issue of HIV,
other health problems, including side
effects, you should go to hospital.

If you tell [health care

workers] about your HIV
status, they will not see you.
We have no access to social
insurance.
I have Lupus, all medications
and laboratory test comes
out of my pocket, doctors
wash their hands, saying "we
can not see your case."

diagnosis, though they use

codes, either way you pay for
the service, the cost can be
lowered depending on the
social category, but the cost
is paid by each one.
I had TB but nothing came
out, I had to stop treatment
due to an allergy, but I was
embarrassed.

There are many reactions to

ARVs are free, tests for viral drugs, including first-line
load and CD4 are paid by the regimes.
Global Fund, other tests such
as toxoplasmosis, urine tests,
endoscopy, chest X-ray,
hepatitis, all you have to pay
yourself.

In hospitals you cannot tell them about

your diagnosis, because they will not see
you.
Everything you pay for.
I have the problem of cervical cancer, but
I'm afraid to say that I have HIV, will they
see me if I say that? I think I may have
problems. The doctor told me "you have
to tell the truth" but with experience I've
had at the dentist, I told my diagnosis and
said he would call me and then never
called, I do not know whether to say or
not.
When I was pregnant I went from hospital
to hospital for fear of talking about my
diagnosis when my waters broke in the
Dutch Hospital, I wet everything, I was 21
years old (cries), the nurse scolded me,
they did not want to clean it up, they told
me to clean it up, how could I clean it if I
was sick? I was trembling with cold. They
did not take care of my son you have to
clean it" they said. I was in pain but they
didnt even give me a bed. I have just
been seen in the Women's Hospital.

I believe that all doctors are on the

internet and thus will know my diagnosis,
so that is why I think I have to tell them.
When I had TB, I went to the emergency
department, they have made excuses not
to see me, they put me in a room that
has a sign that said STRICTLY ISOLATED, I
think that's not right, I do not want to go
to hospital unless I am at deaths door.
When I was in Dutch Hospital, the nurse
said "where is the lady who has AIDS?"
Just like that in front of everyone, this
was how my family found out, health
personnels attitude changed, the
residents there have been freaking, they
took pictures of me, recorded videos of
me on their cell phones, they did not see
my child, they did not change his diapers,
they did not give him milk, it was a damn
ordeal I went through.
Hospitals are a big problem in the case of
children, they can not even defend
themselves you are under the orders of a
physician, he is supposedly help, but
there is discrimination everywhere, but
we can not complain when we are

bedridden.
I feel bad for the pregnant women, they
are young but already they have already
had their tubes tied, the doctors insist on
tubal ligation [sterilization] when they do
their caesareans, really they tell you "do
not have children." It shouldnt be like
that, their duty is serving us.

Transportation, childcare and permission/ leave [from

treatment
Cochabamba
Santa Cruz
Bosses do not want to give
Most of us have children and
permission, not even an hour. sometimes we care for them
alone, when we collect the
We walk with our children up medication we go with the
and down, because we have children.
no one to leave them with.
The problem is if we get sick
Once I could not pick up my then the children are
medication because there
vulnerable, as the saying
was a transport strike, the
goes, "when the mother dies
doctors told me I had not
the sun comes."
been adherent, so I was
referred to a psychologist. I
The biggest problem is for
explained that I could not
those who are from rural

work] related to antiretroviral

La Paz and El Alto
Many of us have informal work, so we can
manage our time, but that work only just
gives us enough for that day.
I do not want to have a stable job
because I think they will just fire me, I
could not have enough leave to pick up
the medication, make checks and other
things.

walk to pick up medications

with my little girl, I had to
make a fuss so that they
would give me drugs again, I
was seven days without
medication. In cases of rural
people, it's worse, they travel
from afar, they make them
come back the next day and
they have to spend money to
stay in the city.

areas, they have to travel far

and sometimes they dont get
seen, and this is why they
stop their treatment.

Quote about good pharmacological principles

Cochabamba
Santa Cruz
We do not know about this
Health staff does the
[pharmacology principles],
minimum required, they do
we do not see it happen. The no take time to talk to each
drugs they give us, they give patient.
as an order, and there is no
dialogue with women.

La Paz and El Alto

About drugs, it is almost an order; they
give little or no information about side
effects. For me it was an ordeal to adjust
to the medication. What really helped me
was her (peer counsellor).

ARV that they are taking and disease monitoring

Cochabamba
Santa Cruz
La Paz and El Alto
Almost all of us are taking
Everyone we know takes TEL. Only some of the ones diagnosed a long
TEL because this is what they
time ago take other medicines, everyone

give us; they say there is only It is true, some have not
TEL.
started because they are in
denial, they have not
Those who are older [been
accepted their diagnosis.
diagnosed longer], have
taken other drugs or none,
For almost a year we have
we have taken what was
not had reagents for Viral
available.
Load and CD4, the machine
was broken, there was
We do a viral load and CD4
reagent, there is not enough
every six months but
to meet the demand, etc.
sometimes do not have
reagents even for the Blood Most are with ARVs since
Chemistry analysis.
2005 when the Global Fund
financing began.
I had to change medications
because it has given me the There is monitoring for Blood
Steven Johnson9 and so I have Chemistry but for over a year
been very ill in hospital.
the laboratories have not
done because there was no
All women are out on TEL,
laboratory reagents, it is also
sometimes without assessing paid for by the Global Fund.
the side effects, it is almost
For other tests such as pap
mandatory to start treatment, smears, breast cancer
there is no choice, if you say prevention, hepatitis, dont
you do not want to start, and even ask we have to pay.

has been out on TEL, almost as soon as

they make a diagnosis they put them TEL.
Women from rural areas do not get a
good explanation, they get bored, when
they have the first side effects, or do not
understand they just leave it.
We have had many problems with Viral
Load and CD4, the needle was broken,
they have not given spares because there
were many new.
For those that have been diagnoses
longer, we've really taken what was
available, in 2004 was a donation from
Brazil, we drank paediatric medicines
because that was the only thing available.

9 Stephen Johnson syndrome a form of toxic epidermal necrolysis, is a life-threatening skin condition, in which cell death causes the
epidermis to separate from the dermis. The syndrome is thought to be a hypersensitivity complex that affects the skin and the mucous
membranes. The most well-known causes are certain medications, but it can also be due to infections, or more rarely, cancers.

then they do not want to see

you. That is why many do not
want to go to the CDVIRs
because they dont have
options to decide for
themselves.

I waited a long time because

there were no drugs in
Bolivia, there are several
people that due to lack of
medicines have gone to other
countries.

At first I had to wait because I

myself had not assimilated
my diagnosis.
I had to stop because it gave
me a strong allergy (Steven
Johnson syndrome)

Feelings on bad days and good days

Cochabamba
Santa Cruz
If it wasnt for the GAMs
I cannot sleep, the
(support groups) I do not
medications have taken away
know where we would vent, my appetite, I always have
the GAMs are like a family.
nausea.
For me taking the drugs is a
must for my children.

La Paz and El Alto

The hardest thing is abuse in the family, I
got to a point where I got fed up and I left
the house, they gave me a separate
plate, everything separate and made
harsh comments saying "God knows why
you've become infected". My mom asked
me back to the house, on returning I put
my terms and conditions.

At 4 years of knowing my
diagnosis, I wanted to die, I
stopped taking the drugs,
I've seen it affects my nerves, taking up to 8 pills a day, now
they call me bipolar,
we take just 1.
When you have children, it is difficult to

anxious, I have many mood

changes.
To take the medicines I had to
brain wash myself, so that my
What affected me most is
body does not reject it.
that I do not feel attractive to
my husband he does not say Drugs have taken away my
anything, but that is how I
sexual desires, I have no
feel and that is why I get
strength or energy, and I do
depressed.
not care.

deal with an entire community that does

not have information about HIV, for them I
often have to live in silence, hidden.
The medication I feel like is an obligation,
like brushing my teeth, for myself I
wouldnt bother, but I go on for my
children.
I met you all and I felt strong again.

I do not remember anything, I

forget everything.

My son is my happiness; I think that if I

die, how will they treat him.

Me too my husband literally

said, "and I do not want you,
you no longer attract me".
From the medicine many
people ask me if I'm pregnant
because I've gained a lot of
weight.

Advice to other women living with HIV

Cochabamba
Santa Cruz
Share amongst ourselves,
I would say to beware, those
seek information, dont
that are responsible with their
isolate yourself, do not sit
lives and consistent

La Paz and El Alto

I would say that taking this medicine is
necessary, do not stop although it is
difficult.

with folded arms to die.

To younger women I would
say that HIV does not deprive
you of your right to have
children.

psychologically, do not think

they will die.

I feel that only God protects us.

Specificity of Cochabamba
The city of Cochabamba is the only city that has a support group
exclusively for women living with HIV, something that the others
asked to have in other cities. The impact of this group shows in the
view of women- more hopeful.

Specificity of Santa Cruz

Women living with HIV in the city of Santa Cruz are more scattered,
partly because attention in the department of Santa Cruz is
decentralized in 20 centres, this due to the number of patients (52%
of cases nationwide are in this department) and large distances of
this department, some do not even know each other. For women of
Santa Cruz the biggest problem is the child support.

Specificity of La Paz and El Alto

Women living with HIV in the department of La Paz, which includes
the cities of La Paz and El Alto, have experienced greater economic
poverty, greater identification with indigenous groups, increased
violence and insecurity of care/ treatment services. Women in these
groups spoke of the difficulties in accessing treatment when it is
explained in an unfamiliar language and western cultural codes.
6

Nadia10 : Pregnant with HIV

Nadia is a woman of 24 who was recently diagnosed at the time of
delivery. Her experience refers to the many violations and abuses
that many pregnant women with HIV suffer today in maternal
services. Nadia is not taking medication; she is awaiting the results
of her viral load and CD4 tests. Her baby is having the prophylaxis
and it is not yet known whether or not she acquired HIV, but the
denial of care by health workers, meant that she had to have a
vaginal birth without being on antiretroviral treatment, this causes
her great distress because she is sure her daughter was born with
HIV.
VR: Thanks for agreeing to talk to me. Can I first ask yourself how
you feel?
Nadia: Very bad.
VR: Bad why?
Nadia: Because I think it's my fault my daughter will not have an
easy life. Because of me, if I had not been with this man and if I had
10 This name has been changed

not left THAT doctor treat me, my daughter would not now have HIV.
VR: What happened?
Nadia: I went to the Korean Hospital and the doctor told my mom
that it could not have a vaginal delivery, because I had an infection.
He did not tell my mom what was wrong. After some time the nurse
came outside and said to my mom, "Why did not you tell me that
your daughter had AIDS? She has put everyone at risk. "
When they did a vaginal examination, my waters have broken and
they left me there all night, the doctor left an order to do a
caesarean but the doctor who has entered the shift change when
has learned, he did not want to take over. "How Come? She had
HIV! "
Nobody helped me; they left me on the floor. I called my mom and
she spoke for me and after threatening to bring the press they
finally saw me because my mom wanted to get me out of the
hospital because of the mistreatment of nurses. My mom was told:
"if you want to complain, do it, but not against the hospital but
against that doctor, do not drag the whole hospital because we have
taken care of you."
VR: What is the name of this doctor?
Nadia: We only know his surname; the hospital will not say his first
name. After this complaint from my mom, they realized and a
student took care of me, but my daughter was born by vaginal
delivery (cries).
The nurse told me that children with HIV would die very quickly. And
she told me that medication would give me welts.
Nadias mother: That's why she ... had tried to do anything
[suicide] ... that is why we no longer leave her alone.
VR: Now are you taking medications?
Nadia: No. They told me I should do viral load and CD4 first.
VR: And are they giving prophylaxis to your daughter?
Nadia: Yes they are giving her syrup (cries).
7

Claudia11 : Being transgender woman and living with HIV

Claudia is 45 years old, has been a leader among transgender
women but recently has become visible as a transgender woman
11 This name has been changed

living with HIV.

VR: How do you feel?
Claudia: For me it [HIV] is like a husband to be maintained for life,
just that.
VR: I understand. Are you taking medication now?
Claudia: I am ... (silence)
VR: About alcohol, what have you seen amongst transgender
women who take medicine?
Claudia: You know, trans girls can drink up to 15 days and also use
drugs, this consumes them and they die like flies. I know many who
die because of heavy drink and drugs and dont take their
medication and do not want to go to CDVIR because they dont want
to be seen.
VR: And you Claudia, Do you not have an alcohol problem?
Claudia: I will not lie, I drink, but not excessively.
VR: What are the main concerns of transgender women living with
HIV?
Claudia: Stigma, they take away their health card if they find out
they have HIV, and they cannot work. Uh ... is a social death for the
trans girl.
VR: I understand. What else?
Claudia: Violence from their husband/partner, with them they do not
use condoms but sometimes also they dont use with clients, you
know how nice it is to have sex without condoms. You know, I tell
you, many men who come for fun at the avenue12 those then are
seen in CDVIR, they are PLHIV, but are married, and then the
pregnant wife comes too.
VR: That is why trans women must unite with women to care for
ourselves. Claudia Tell me, what would happen if a trans discovered
their diagnosis in the workplace [sexual]?
Claudia: She would be hanged, be lynched. Discrimination is huge.
So I want to work for my transgender friends because they die like
flies.
VR: And you will make it, you are a great leader, we will support you
in everything. Claudia, does your friend Alicia, does she knows
you're with the diagnosis, I ask you to know what her reaction was?
Claudia: The truth is I dont know if she really knows, but once she
told me: "Have you taken your sweets13? Another time she said:
"She takes her sweets like popcorn".
VR: (laughs) But has she treated you badly?
Claudia: She does not, she is very well educated, I think you know.
8

Cintia14 : A woman living with HIV and TB

12 Refers to one particular Avenue in La Paz known for its
transgender sex work.
13 Antiretroviral drugs.
14 This name has been changed

Cintia is 39, has survived TB but this disease has been the main
reason for dismissal from her workplace, Cintia abandoned her TB
treatment as a result of depression caused by the lack of support
from her boss.
CYNTHIA: The bosses do not want me to take leave, I had TB but I
left my treatment because they [the health centre] demand that I
collect the medicine each week but at work they did not want me to
take so much leave. Every Monday I would go to pick up the
medication. I told my work it was cancer but they followed me and
took photos in that centre that said "Treatment for TB is freely given
in this centre". Using those photos they have fired me, my boss
said, "You have put everyone at risk, you could be contagious, you
have lied to us ". I was so depressed at that situation I stopped the
treatment and I have not retaken it until now. In the CDVIR the
doctor said, "you stopped the treatment, you will be responsible if
you get sick."
VR: Did you think about making a complaint?
CYNTHIA: No ... I have no strength; I just tried to forget what
happened.
9

Fatima15: Born with HIV

Fatima was born with HIV and is the only case of a girl who has
survived up to 18 years.
VR: Thanks for helping with data collection. Your experience is
important because you're the only girl in Bolivia that has managed
to live to 18 years with the diagnosis. Especially I want to ask about
medications, what do you take?
Fatima: I take Kaletra, DDi [Didanosine] and Stavudine, which I have
been taking since I was 11 years old.
VR: DDi and Stavudine16? Are you sure?
Fatima: Yes.
VR: What's your overall experience of care services?
Fatima: Well ... ok, not good quality.
You vr: How do you feel about your medication?
Fatima: I take 9 pills, I have a sore throat, for 18 years I am taking
15 This name has been changed
16 Drugs DDi and Stavudine were removed from the national guidelines of
antiretroviral drugs in Bolivia due to the high toxicity.

tablets, I used to take up to 22 tablets, they are large tablets, until

now the DDi one I have to chew.
VR: I understand ...
Fatima: That's why sometimes I stopped taking them, occasionally I
stop them [the medication ] , is the routine of the drug that already
has me tired.
VR: Do you think that the experience of a woman who acquired HIV
is different from one that is born with HIV?
Fatima: Very different!
VR: What's the difference?
Fatima: For example ... I feel that HIV is a betrayal, something that
should not have happened, why me? I always wonder that.
VR: Do you want to have children?
Fatima: No way ...
VR: What do you think of your mom?
Fatima: I will always miss her, so I put on my Facebook cover a
photo of her.
VR: Are you studying?
Fatima: In school
VR: How has that been?
Fatima: More or less ... some girls in my class thought that because
I touched them, they have got HIV. That was when my father had to
go to give talks at the school, the parents also complained to the
director. Because of that, I lost a year of school.
10

Recommendations of women living with HIV

Women living with HIV in the three groups made the following
recommendations / general questions:

What will be the result of this study in Bolivia?

What will UN Women do to help women with HIV in Bolivia,
especially using the results of this study?
We recommend that you have groups, workshops and forums for
women and their children.

We call for a national network of women living with HIV to be

formed because as women we support all people living with HIV but
men do not support us, they forget us.
Especially the gay population who tend to monopolize all spaces,
according to their use of gender criteria.
We need our own space where we can talk like women.
Our main CONCERN are the children, we put ourselves at last.

11

Conclusions

The following conclusions can be derived from a brief analysis of the

responses of women:

There are no spaces for women living with HIV.

The activities with women living with HIV are limited to vertical
transmission of HIV.
Only the most basic services are covered by the Global Fund, but
those essential for women like Pap smears, breast cancer screening
must be paid by each woman.
The lack of a stable job has a direct impact on the health and well
being of women.
Women, as a product of the dominant gender system, prioritize the
health of their children at the expense of their own.
Measures such as Prep are not known about but it is clear that there
will be ethical consequences.
One of the most violated rights is the right to motherhood.
There are no choices in relation to antiretroviral treatment. The vast
majority of women who participated in the 3 dialogues are taking
TEL, except for Fatima who continues to use paediatric drugs that
are highly toxic. The guidelines for antiretroviral have implemented
the change of antiretroviral drugs for all people living with HIV
because this regime is the only one in the government procurement
plans (TEL), ie purchases that do not depend or international
[funding] cooperation. Second line antiretroviral drug such as
Darunavir, are currently only available as a donation from Aid for
AIDS.
The context of the stigma surrounds the whole experience of
antiretroviral treatment and care of women living with HIV, which
also has implications for their children.
Hospitals are the health centers where women have experienced
most discrimination with violations of fundamental human rights.
The family is also an entity of discrimination.
The situation of women living with HIV in the rural areas (unreached
by these dialogues), could be even more complicated.
The transgender women see women as allies, but before
approaching them it is necessary to solve the great stigma
surrounding sex work and life of transgender women living with HIV.