Professional Documents
Culture Documents
2020 Zalazar TransEthics
2020 Zalazar TransEthics
2020 Zalazar TransEthics
To cite this article: Virginia Zalazar, Ines Aristegui, M. Eugenia Socías, Nadir Cardozo, Omar
Sued, Kate Shannon & Putu Duff (2020): Ethics and the treatment as prevention strategy
among transgender women living with HIV in Argentina, Culture, Health & Sexuality, DOI:
10.1080/13691058.2020.1720821
Introduction
Transgender women are among the populations most affected by the HIV epidemic,
with an estimated worldwide prevalence of 19.1% (Baral et al. 2013). Though trans-
gender women specific data in Latin America are limited, 2019 estimates suggest the
transgender population has the highest HIV prevalence in the region at 22.2% com-
pared to a prevalence of 12.6% among gay and other men who have sex with men,
and (3.6%) among people who inject drugs. Despite bearing a disproportionate bur-
den of HIV, transgender women in Latin America continue to experience limited
access to HIV services, from HIV prevention, testing and treatment to care (Silva-
Santisteban et al. 2016). For example, previous research in Peru found that 24% of
men who have sex with men and transgender women knew their status, compared to
54% of the general population of people living with HIV (Chow et al. 2016). In Brazil,
while transgender women’s antiretroviral therapy (ART) coverage mirrored that of peo-
ple living with HIV in the general population, viral load suppression among trans-
gender women was substantially lower (Jalil et al. 2017). Among transgender women
living with HIV, healthcare access is often hindered by a range of social and structural
barriers, including stigma and discrimination related to gender identity, marginalisa-
tion, poverty, sex work and presumed HIV status (Dahlgren and Whitehead 1991; King
et al 2019; Socıas et al. 2014; Silva-Santisteban et al. 2016).
In Argentina, HIV prevalence among transgender women has been reported to
be 34%, compared to only 0.4% in the general population (Ministerio de Salud de
la Nacion 2018; dos Ramos Farıas et al. 2011). The National AIDS Law (Congreso de
la Nacion Argentina 1990) mandates the free provision of medical, pharmacological
and psychological services/treatment for people living with HIV offered through
both public and private health systems, while maintaining ethical standards at every
step along the HIV care cascade (Lavadenz, Pantanali and Zeballos 2015). Current
national guidelines require written informed consent both pre- and post-HIV test
(Maglio 2012; Ministerio de Salud de la Nacio n 2013, 2016). Antiretroviral therapy
has been available since 1996, and HIV services scale-up using the treatment as pre-
vention strategy, has been underway since 2014. Despite Argentina’s efforts to
ensure universal and equitable access to HIV services, studies have highlighted sig-
nificant barriers to accessing HIV services among transgender women (Socıas et al.
2014), with only 38% of transgender women having viral suppression (defined as
viral load <50 copies/mL) compared to 59% in the general population(Cesar
et al. 2016).
These inequities in HIV access and outcomes persist despite the implementation
Argentina’s progressive Gender Identity Law in 2012 (Congreso de la Nacio n Argentina
2012), which acknowledges the right to include self-defined gender on identity docu-
ments, and has resulted in efforts to improve access to gender affirmation procedures.
Since the Law’s enactment, many trans-sensitive services have been created and sev-
eral strategies have been developed to improve linkage to health services for trans-
gender women, including a domiciliary HIV rapid test, treatment as prevention
approaches, comprehensive transgender-sensitive services, and the provision of free
hormone therapy. Treatment as prevention is a well-established scientific approach
that aims to provide universal access to voluntary HIV testing, the immediate offer of
ART and continued access to HIV care (British Columbia Centre for Excellence in HIV/
AIDS 2018). The approach has been found to reduce morbidity and mortality in people
living with HIV and, as a secondary benefit, prevent onward HIV transmission (Cohen
et al. 2016). It is increasingly being adopted globally and is a key component of the
UNAIDS’ plan to meet the 90-90-90 targets (UNAIDS 2014) which aim to ensure 90%
people living with HIV are aware of their status; 90% of those diagnosed receive
CULTURE, HEALTH & SEXUALITY 3
sustained ART; and 90% of people living with HIV on ART achieve virological suppres-
sion by 2020.
A key component of the UNAIDS plan is to implement targeted strategies, focused
on key populations, including transgender women. Although treatment as prevention
has the potential to improve the health and well-being of transgender women, com-
munity groups, policy makers and human rights experts have raised numerous ques-
tions around the ability to scale-up HIV services, particularly focused on marginalised
populations, while ensuring the highest of ethical standards (Global Network of Sex
Work Projects (NSWP) 2014; Knight et al. 2014; UNAIDS 2014). In particular, there
remains the need to identify strategies that promote confidentiality, autonomy (e.g.
informed consent) for testing and treatment, particularly among key populations, who
may perceive a greater power-distance between themselves and their health providers
(Knight et al. 2014; Vonn 2012). Among transgender women in particular, there is a
critical need to examine ways to ensure equitable access, without exacerbating gen-
der-based stigma and discrimination (Knight et al. 2014; Barr, Amon, and Clayton
2011). There is also a need to assess the acceptability of a targeted treatment as pre-
vention approach among key populations, including transgender women.
To address this knowledge gap, this qualitative community-based study sought to
better understand transgender women’s experiences and perspectives surrounding the
ethical dimensions of HIV scale-up, guided by the principles outlined by Beauchamp
and Childress including respect for persons, autonomy, justice, privacy and confidenti-
ality, beneficence and non-maleficence (Beauchamp and Childress 2001; Hlongwa
2016; National Commission for the Protection of Human Subjects of Biomedical and
Behavioral Research 2014). This study also examined the implications of targeted HIV
services (e.g. stigmatisation), in the context of treatment as prevention in Buenos
Aires. The overall aim of this study was to identify ways to improve the ethical and
equitable scale-up of HIV services for transgender women in Argentina.
consent; (4) living in Buenos Aires metropolitan area; and (5) living with HIV.
Participants were purposively recruited to represent diverse contexts, including
involvement in sex work; use of illicit drugs; and the year of diagnosis and treatment
initiation as the diversity of these experiences are key to the objectives of this research
project. During recruitment, the peer-research associate provided detailed information
about the study purpose, methods, benefits and risks, both verbally and writing. All
participants received a $250 ARS (approximately $15 USD) reimbursement for their
time and participation in the study. The study received ethical approval through the
Providence Health Care/University of British Columbia Research Ethics Board and
Fundacio n Hu esped Ethics Board.
Data collection
Following written informed consent, interviews were conducted by a trained peer
research associate in Spanish, using a semi-structured interview guide, adapted to cap-
ture the unique experiences of transgender women, and developed based on commu-
nity consultations conducted prior to the interviews. The resulting guide encompassed
a range of topics exploring ethical issues along the continuum of HIV care, including:
autonomy (e.g.informed consent, information, comprehension and voluntariness) in
the context of HIV testing and treatment initiation; privacy and confidentiality; justice
(e.g. access, stigma-free services); beneficence and non-maleficence (e.g. unjustly bur-
dening individuals for the benefit of the community). We also explored perspectives
around the ethics and implications of targeting key populations in HIV prevention and
treatment strategies, such as stigmatisation due to targeted services. Finally, we
sought to gather suggestions for the improvement of HIV services. Interviews took
approximately 60-90 min to complete and were audio-recorded, transcribed verbatim
and translated into English by professional translators.
Data analysis
All identifying information was removed from the interviews and pseudonyms were
used to protect anonymity and confidentiality. Participatory coding sessions were held,
whereby a team including a peer-research associate and two researchers checked for
accuracy and read the interviews together to inform coding. Using an inductive the-
matic content analysis approach (Thomas 2006), the team identified and discussed
emergent themes which, after comparison with additional interviews and field notes,
were combined in a code book, agreed on by team members. The team coded all
transcripts using the code book as a guide. The code book was revised on an ongoing
basis as new themes emerged from the interviews.
Results
Sociodemographic and HIV characteristics
In total, 25 transgender women were interviewed, with a mean age was 46 years
(SD ¼ 10.85; range: 26-63 years), with all participants indicating a history of sex work.
CULTURE, HEALTH & SEXUALITY 5
Year of HIV diagnosis ranged widely (1991-2015) as did the year of treatment initiation
(1998-2016). Of the 25 participants, 9 (36%) began treatment the same year of diagno-
sis, 7 (28%) began between one and five years post-diagnosis, 5(20%) between 6 and
10 years, and 16% more than 10 years post-diagnosis. All participants but one were
currently taking ART and 13 (52%) had experienced ART gaps in the past.
Interview findings
In-depth interviews revealed a range of themes pertaining to ethical issues occurring
along the cascade of care and are presented here as they relate to: (1) HIV testing and
diagnosis, (2) ART initiation and adherence, (3) perceptions and experiences around
targeted treatment as prevention strategies, and (4) recommendations to support
access to and patient rights in HIV services.
Similarly, while many of the women tested pre-treatment as prevention were not
specifically offered a test or signed a consent form, most participants reported not
feeling coerced into testing. However, two described questionable practices related to
informed consent. For example, one participant described being tested for HIV without
her consent while hospitalised, and only found out afterwards, when a pharmacist
told her she had HIV.
They never told me I had the virus, they just treated me for the lungs, nothing else.
When I was released, I went to get my pills for tuberculosis and they told me that,
6 V. ZALAZAR ET AL.
because of my condition, they were going to have to change my medication. And I asked
what condition, and they said I had AIDS. And I said, nobody told me … They just did it,
I think it was because I am transgender. That’s how they work at that hospital, I guess.
Transgender people, just test them all for HIV … . (Leticia, 32 years old)
Lack of adequate information pre- and post-test. A common theme among participants
testing both pre- and post-treatment as prevention was the lack of knowledge and
information provided about HIV, HIV testing (both pre-test and post-test) and ART.
The lack of counselling information deterred three women from returning for their
results. Unable to accept their diagnosis, others tested again at a later date.
… when I went to get my results, [the receptionist] told me they couldnt [give me the
results], the doctor had to get them. Since I didnt know, I had no information, I thought
the worst had happened … . I preferred not to know, so I didnt go to get my results. But
it stuck in my mind, so later I decided to go get tested again. (Malena, 52 years old)
While some interviewees described receiving HIV information alongside their results,
others did not recall receiving any information at all, either pre-test or post-test:
Nothing, no information at all … I didn’t get any information until I got a positive result.
(Mercedes, 44 years old)
The lack of adequate information provided around HIV testing was exacerbated by
low levels of HIV knowledge among some transgender women. A few transgender
women explained they had viewed HIV as a death sentence, after watching other
transgender women die from AIDS-defined illnesses.
Many transgender women explained that the lack of communication, including the
lack of HIV treatment and care information provided in their first encounter, negatively
affected their ART initiation and adherence.
About half of transgender women interviewed, including Mercedes who initiated
ART post-treatment as prevention, felt disrespected by their health care provider, who
did not provide essential information around HIV, including how ART works, possible
side-effects, and the meaning of their CD4/viral load as it relates to health.
CULTURE, HEALTH & SEXUALITY 7
Sometimes they dont want to give us [transgender women] information so that they dont
have to know us … so its hard, its also hard for them to see us. Its like they look at you,
they dont touch you, the dont check you, they give you any medication to try to get you
out of the way … . (Lorena, 44 years old)
A few women mentioned that they did not know it was their right to ask questions
or simply felt that raising questions would inconvenience their health care provider.
I didn’t feel I could ask questions, now I know I can ask any of my doctors and they have
the obligation to answer and explain things to me. (Violeta, 26 years old)
Lack of information and/or accessible information around ART was described by all
three participants who initiated ART post-treatment as prevention. They included Clara,
who did not receive adequate information about ART, including about side effects and
the relationship between ART adherence and CD4 values. After beginning ART, she
returned to her provider complaining of side effects and was switched onto new medica-
tions without receiving any information surrounding her new ART regimen.
Privacy and confidentiality in health care settings: Fear of intra-community stigma when
accessing ART. Many participants reported that their healthcare providers respected their
privacy and confidentiality and although they perceived HIV stigma, it did not interfere
with their ability to make appointments or impact their ART adherence (e.g. no difficulties
in carrying ART on their person). Only one participant, who initiated ART post-Treatment
as prevention, recalled a breach in her confidentiality when a health insurance employee
and a physician shared her HIV diagnosis out loud in front of other people.
In terms of confidentiality and privacy, many women voiced concerns around keeping
their HIV status confidential from other transgender women accessing services. About half
8 V. ZALAZAR ET AL.
the participants feared their HIV status would be revealed to other transgender women
while accessing HIV care, potentially resulting in intra-community HIV stigma. One partici-
pant described being stigmatised after her status had been ‘outed’ to other trans-
gender women:
I was stigmatised by the other girls, yes. They knew they could hurt me [by disclosing my
HIV status to others] … I was always afraid people would tell me they had been told
about my condition. They even told people I was dead. They knew they could hurt me
with that, and I was in constant fear of others finding out. (Guadalupe, 36 years old)
Of the 25 transgender women interviewed, only three mentioned that they did not
prefer targeted services,
Flexible and extended hours of operation. About half the participants suggested the
need for more flexible and extended hours for HIV services. Current HIV services are
only open in the mornings, proving a barrier to the many transgender women
engaged in sex work who are unable to attend early appointments after a night shift.
I think the working hours should be in the afternoon because of the life that most girls
have, doing sex work. Because if a girl does sex work, if she is supposed to go to the
hospital in the morning, she won’t go. That is one of the reasons girls let themselves go
and only get to a hospital when they are dying. (Jimena, 39 years old)
Training for health care providers working with transgender women living with HIV.
Participants highlighted the need to train all hospital personnel to ensure delivery of HIV
services free of stigma and discrimination, particularly with regards to gender identity.
More information should be given to the staff [transgender women] have to see when we
go to the hospital … they should be trained and treat us well. Some people don’t know
how to treat us. Even though there’s some kind of law, there are still people who call us
by our male name. (Mercedes, 44 years old)
Discussion
This study identified a range of serious ethical challenges that transgender women liv-
ing with HIV in Buenos Aires experienced surrounding access to the HIV care con-
tinuum and offers community-driven recommendations to support equitable access
and patient rights in the context of HIV service scale-up.
Challenges related to the principle of autonomy were found to cut across all steps
in the HIV care continuum. These findings suggest pre- and post-test counselling and
informed consent, both required by Argentinean law (Congreso de la Nacio n
Argentina 1990), have not been met for many transgender women. It is important to
note however that participants’ accounts of the informed consent process could be
affected by recall bias, particularly for those with many years since diagnosis.
Alternatively, the findings may indicate that participants may not have fully under-
stood the information offered to them. Indeed, our findings highlight the need for
health care providers to communicate HIV information using lay terms – a common
challenge for health care providers serving populations with low literacy (Manafa,
Lindegger, and Ijsselmuiden 2007). Regardless, the low recall of informed consent sur-
rounding testing and treatment suggests that patients’ right to make fully informed
decisions about their HIV care may not have been met in all cases (Bhanji 2013).
These findings echo research among key populations elsewhere (Duff et al. 2018), and
are aligned with community concerns around informed consent of marginalised popu-
lations in the context of HIV services scale-up (Global Network of Sex Work Projects
10 V. ZALAZAR ET AL.
[NSWP] 2014). These results are concerning, as information is critical to make fully
informed, autonomous decisions about any treatment (White and Seery 2009), and evi-
dence that a lack of information may result in delayed healthcare uptake, low adher-
ence and treatment gaps (Muessig et al. 2015; Aziz and Smith 2011; Sprague and
Simon 2014). Our findings support this, with a number of women indicating delays in
obtaining results and initiating treatment following inadequate pre- and post-test
counselling. While most participants reported not feeling coerced into testing or treat-
ment, the two incidents of involuntary HIV testing remain concerning. It is important
to ensure voluntary HIV testing across all settings, including in hospital and
prison settings.
The experience of discrimination voiced by participants, such as the lack of respect-
ful interaction and information around ART echo the concerns of many cisgender peo-
ple living with HIV (Jones et al. 2016; Govindasamy et al. 2014). Such interactions can
undermine patients’ autonomy, limit their comprehension of ART and may translate in
to low control over treatment options and adherence (Muessig et al. 2015). These find-
ings highlight the continued need to ensure positive interactions/communication with
healthcare providers, including obtaining explicit consent for ART, which are important
facilitators of ART initiation and retention in care (Koirala et al. 2017).
Consistent with previous studies among transgender women in Latin America,
including Argentina (Socıas et al. 2014; Silva-Santisteban et al. 2016), our findings con-
firm that many transgender women experience and/or perceive additional gender-
related discrimination from their healthcare providers (Jang, Allerton, and Scruth 2017;
Sevelius et al. 2019; King et al. 2019), including the non-recognition of gender identity
(Silva-Santisteban et al. 2016) and presumptions around HIV risk. Previous studies sug-
gest such treatment signals a lack of training in sexual diversity and trans-health
(Poteat, German, and Kerrigan 2013). These reports of gender-based discrimination are
not surprising given the high levels of stigma towards transgender individuals and
other gender minorities in Argentina (Pecheny 2008), and may exacerbate transgender
women’s already limited access to HIV services.
Our findings point to a need for healthcare provider training to address HIV-related
stigma more broadly and ensure positive and respectful communication for all people
living with HIV. In the Argentinian context, training in motivational interviewing has
proven successful for promoting ART adherence people living with HIV (Jones et al.
2016). Motivational interviewing is a technique to enhance provider-patient communi-
cation and is designed to enhance HIV and ART knowledge, by offering information in
accessible, tailored language. Furthermore, in keeping with international guidelines
(WHO 2015), and echoing recommendations from transgender women in other set-
tings (Sevelius et al. 2019), additional training in and provision of gender-affirmative,
comprehensive care for transgender women is urgently needed. Gender-affirmative
care includes the respectful acknowledgement of transgender women’s barriers, gen-
der-identity (e.g. correct use of pronouns), and needs (e.g. provision of hormone ther-
apy), and have been found to mitigate mental health risks (Wilson et al. 2015) and
improve quality of life among transgender people (Murad et al. 2010). The integration
of gender-affirmative care into HIV was recommended by participants, and may help
improve engagement and retention along the HIV care continuum (Reisner, Radix, and
CULTURE, HEALTH & SEXUALITY 11
Deutsch 2016), although further research into the most effective models in the
Argentinean context is needed. Additionally, as suggested by participants, the use of
peer navigators (i.e. transgender women living with HIV) could improve access to HIV
services by offering plain language information by an individual with whom they feel
comfortable. However, given that many participants feared intra-community stigma
when accessing HIV services, we acknowledge the challenges such an intervention
could pose. As documented previously (Zalazar et al. 2018), the careful selection of
peer-navigators may be the key to success; there exist numerous transgender women
peers whom transgender women currently turn to and trust for advice surrounding
HIV/STI testing and services navigation. These informal peer navigators already play a
key role in HIV education and could be key to the ethical scale-up of treatment as pre-
vention in Argentina’s transgender women community. Promisingly, our findings
reveal positive changes following the implementation of the Gender Identity law
(Arıstegui et al. 2017), resulting in an increased sense of empowerment among trans-
gender women, and improved understanding and sensitivity of some healthcare pro-
viders serving transgender women living with HIV (Fundacio n Huesped 2017).
Narratives from this study reveal that concerns voiced on the international stage
regarding the ethics of targeted HIV services (Barr, Amon, and Clayton 2011; Kaposy
et al. 2017) may not necessarily play out on the ground. While most were unaware of
the concept of treatment as prevention, once explained, almost all participants felt the
approach was ethical and beneficial to transgender women living with HIV, with some
stating the strategy may improve equity in access. Moreover, echoing research among
men who have sex with men in Canada (Knight et al. 2014), most participants did not
feel that targeted treatment as prevention strategies unfairly burdened transgender
women for the benefit of the larger community. Most stated that individual health
benefits and secondary population-level preventive benefits offered a win-win situ-
ation. In accordance with previous research around transgender women healthcare
(Sevelius et al. 2014), others suggested that extending service hours could improve
access for transgender women, particularly those engaged in sex work.
Limitations
The study has several limitations. First, the results may not be generalisable to trans-
gender women in other parts of Argentina. Second, although we made efforts to cap-
ture a range of dates of HIV diagnosis, our final sample included only three transgender
women diagnosed post-treatment as prevention. Therefore, our findings related to HIV
testing experiences may not be generalisable to all transgender women testing in the
post-treatment as prevention era. However, we found perceptions and experiences of
these individuals around testing, and especially treatment, to be similar to those diag-
nosed pre-treatment as prevention. Third, as participants were recruited through a var-
iety of methods, including peer-research associate contacts, this may have introduced a
selection bias. Given the study’s peer-research associate had close relationships with a
wide range of transgender women groups and non-governmental organizations
throughout the metropolitan area of Buenos Aires, we consider this bias to be minimal.
Finally, because of our peer-research associate’s involvement in HIV prevention efforts in
12 V. ZALAZAR ET AL.
Buenos Aires, social desirability bias may have been a factor, causing some participants
to overstate condom use, or speak more favourably about peer navigators. However,
given our peer-research associate was a trusted member of the transgender women
community, we believe this would have improved comfort with participants (e.g. mini-
mised fear of judgement), and facilitated truthful answers, mitigating the potential for
this bias. Overall, we believe peer-research associate involvement in the research process
improved the quality and ethical strength of this study by ensuring research questions,
methods and research products were community-driven and designed to directly bene-
fit Argentina’s transgender women community. By offering her insight along every step
of the study, our peer-research associate enhanced community engagement, ensured a
‘safe space’ for participants, while also building community research capacity. Moreover,
findings from this community-based study were used to inform an online training
course for HIV service providers working with transgender women in Argentina.
This study highlights the ongoing ethical challenges related to the scale-up of HIV
services among transgender women in Buenos Aires, Argentina, and offers commu-
nity-driven suggestions to support the provision of rights-based HIV services for trans-
gender women. Of importance, to ensure fully informed consent across all steps of
the HIV care continuum, steps need to be taken to provide comprehensive, non-judge-
mental and accessible information (in lay terms), tailored to the needs and realities of
transgender women living with HIV. Innovative services, including flexible and
extended service hours, the inclusion of peer navigators, and training in the provision
of gender-affirmative services (inclusive of hormone therapy) integrated within HIV
care should be explored. Finally, in line with UNAIDS guidelines towards achieving the
90-90-90 targets, further health care provider training on ethics, gender-based discrim-
ination and stigma are needed to better support the rights of transgender women.
Note
1. Argentina’s Gender Identity Law, passed in 2012 (Congreso de la Nacio n Argentina 2012),
acknowledges the right to include self-defined gender on identity documents.
Disclosure statement
No potential conflict of interest was reported by the author(s).
Funding
This work was supported by a Community-Based Research Catalyst Grant from the Canadian
Institutes for Health Research under Grant no. CDE 143022.
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