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COUNTING TRANS PEOPLE IN

Advancing Global Data Collection


on Transgender Communities and HIV

Counting Trans People In: Advancing Global Data Collection On Transgender Communities And HIV

IRGT: A Global Network of Transgender Women & HIV


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Counting Trans People In: Advancing Global Data Collection On Transgender Communities And HIV

Acknowledgments
This document is produced by the IRGT: A Global Network of Transgender Women and HIV
(IRGT). The IRGT works with trans organizations, communities, and advocates around the world.
Its members are transgender advocates with extensive experience in different world regions,
including Africa, Latin America, North America, South and Southeast Asia, and Europe. Members
have a wide range of skills, knowledge, and experience, including HIV, human rights, high-level
advocacy, strategic planning, and programming and service delivery for transgender communities.
The current roster of members includes: Jana Villayzan Aguilar (Peru), Abhina Aher (India), Mauro
Cabral (Argentina), JoAnne Keatley (co-chair; USA), Amitava Sarkar (co-chair; India), Khartini
Slamah (Malaysia), Maria Sundin (Sweden), Leigh Anne Van de Merwe (South Africa), Michelle Ross
(England), Manisha Dhakal (Nepal), Marvellous Tambwe (Tanzania), Kanyanta Kakana (Zambia),
Ricky Nathason (Zimbabwe), Alexandra Rodrguez (Mxico), Erika Castellanos (Belize), Cecilia
Chung (USA), Prempreeda Pramoj Na Ayutthaya (Thailand), Simran Shaikh (India).
The IRGT commissioned Consultant, Ayden Scheim, to write this report, with inputs provided by
co-chair, JoAnne Keatley, with support from Omar Baos, from the MSMGF.
We wish to acknowledge the community leaders and researchers who were consulted in the
development of this brief for their generous contribution of time and expertise: Abhina Aher (India
HIV/AIDS Alliance, India), Sonya Arreola (Global Forum on MSM and HIV, USA), Stefan Baral (Johns
Hopkins Bloomberg School of Public Health, USA), Jack Byrne (Trans human rights researcher, New
Zealand), Madeline Deutsch (Center of Excellence for Transgender Health, University of California
San Francisco, USA), Manisha Dhakal (Blue Diamond Society, Nepal), Tonia Poteat (Johns Hopkins
Bloomberg School of Public Health, USA), Sari Reisner (Harvard University, USA), Michelle Ross
(CliniQ, England), Leigh Ann van der Merwe (Social, Health and Empowerment Feminist Collective of
Transgender Women of Africa; South Africa), and an anonymous stakeholder.
Recommended citation: International Reference Group on Transgender People and HIV/AIDS.
(2016). Counting Trans People In: Advancing Global Data Collection on Transgender Communities and
HIV. Available at http://transglobalactivism.org/counting-trans-people-in-advancing-global-datacollection-on-transgender-communities-and-hiv/.
IRGT: A Global Network of Transgender Women & HIV
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Counting Trans People In: Advancing Global Data Collection On Transgender Communities And HIV

Contents
1. Introduction and executive summary

5
7

Key Terms
2. What data are currently available?

How many people are trans?

What is the burden of HIV among trans women?

What is the burden of HIV among trans men?

13

What is the burden of HIV among gender non-conforming people?

13

Disaggregation of data from sex workers

14

What do we know about other key indicators for HIV prevention,


treatment, and care?

14

The HIV care continuum, from diagnosis to viral suppression

15

Access to other health services

15

Sexual and injection risk behavior

15

Critical enablers for the HIV response

16

3. Methodological issues in trans data collection

17

Operational definitions of trans in diverse cultural contexts

17

Questions to identify trans people in data

19

Sampling and data collection methods

20

4. Recommendations

22

References

26

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Counting Trans People In: Advancing Global Data Collection On Transgender Communities And HIV

Introduction
Trans (transgender) people exist in all societies and almost universally face stigma and
discrimination that contribute to health inequities. Trans people are often highly visible and
yet have been made invisible in most research and data collection. Trans advocates have
long challenged this erasure,1 emphasizing the right to be counted- a critical right in an
increasingly data-driven world.2
An effective response to HIV epidemics
among trans people requires high-quality
data collection on the burden of disease
across subpopulations, determinants
of HIV risk, access to prevention and
treatment, and structural factors that
enable or hinder the HIV response.3
This brief aims to (1) review the current
state of quantitative data collection
on trans people and HIV globally, (2)
assess data collection methods in
use with trans populations, and (3)
provide recommendations for improving
data collection. It was developed by
International Reference Group on
Transgender People and HIV/AIDS, a
global network of trans women that
advocates for trans issues in the global
HIV response. It is based on a review
of existing publicly available data and
interviews with stakeholders involved in
collecting, analyzing, and using data on
trans people and HIV. The brief focuses
on descriptive population health data, but its recommendations are applicable across the
full spectrum of data collection. It is intended to provide guidance to policy-makers, donors,
researchers, health sector staff, and trans communities.

Trans people are often


highly visible and yet have
been made invisible in
most research and data
collection. Trans advocates
have long challenged this
erasure,emphasizing the
right to be counted
a critical right in
an increasingly
data-driven world.

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Counting Trans People In: Advancing Global Data Collection On Transgender Communities And HIV

Executive Summary
Available data on the health of trans communities clearly demonstrate profound inequities, including
an incredibly high burden of HIV among trans women who have sex with men and widespread
human rights violations.4,5 While data collection on trans people is increasing, research has been
concentrated in the global North. Data are largely absent across large swaths of the globe. A
systematic review of peer-reviewed research on trans health published between 2008-20144 found
116 studies from 30 countries: over half were from the United States of America, and no other country
had produced more than five studies. Published
studies were unavailable for most of Africa, Central
and Eastern Europe, Central Asia, and China. Trans
men are particularly under-researched and undercounted: about three-quarters of published studies
focused on trans women. Where data on trans people
do exist their quality is often low, and inconsistent
collection practices limit interpretability and utility.
High-quality disaggregated data on trans health and
HIV are urgently needed at regional, national, and
sub-national levels, including data on the social,
legal, and political environments that may facilitate
or impede an effective response to HIV. UNAIDS
has set ambitious HIV treatment targets for the year
2020: for 90% of people living with HIV to be aware
of their diagnosis, 90% of those diagnosed receiving
sustained anti-retroviral therapy (ART), and 90%
of those on ART achieving viral suppression.6
Without substantial scale-up of data collectionand
interventionon the continuum of HIV care in trans
populations, it will be impossible for these targets to
be met for trans people.

High-quality
disaggregated data on
trans health and HIV
are urgently needed at
regional, national, and
sub-national levels,
including data on the
social, legal, and
political environments
that may facilitate or
impede an effective
response to HIV.

Researchers, monitoring and evaluation officers,


community programmers, health care providers, donors, and policy-makersall have critical
roles to play in improving data collection on trans health and HIV globally. There remain
challenges to data collection with trans populations, some of which are shared with other key
populations and others that are unique. Foremost among these challenges are stigma and
discrimination, which impact both the ability to collect data in trans communities and the political

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Counting Trans People In: Advancing Global Data Collection On Transgender Communities And HIV

RECOMMENDATIONS

will to do so. There are also methodological challenges, including measuring gender identity
cross-culturally, sampling methods, and disaggregating data to the level of granularity required.
However, strategies to address some of these challenges already exist. To begin improving data
collection on trans communities and HIV, we make the following recommendations:

1| Guided by trans communities, collect and report disaggregated data on the continuum of
HIV prevention, care, and treatment among trans people. This requires measurement
of both gender identity and assigned sex at birth in all data collection efforts.
2| Do not pool data from trans women and men who have sex with men.
3| Collect data on trans mens health needs, including but not limited to HIV.
4| Carry out trans-specific research.
5| Engage trans communities in developing and implementing data collection activities.
6| Synthesize and disseminate the evidence we already have.
7| Develop technical guidance for trans data collection.
8| Adequately fund trans data collection and hold funding recipients accountable for
trans inclusion.

Key terms
Trans or transgender is an adjective for individuals whose gender identity and/or expression
vary from social expectations for their birth-assigned sex. It includes trans women and trans
men, as well as gender-nonconforming, genderqueer, or non-binary individuals who identify
as neither female nor male. Trans women are individuals who were assigned a male sex
at birth and identify as female or feminine. Trans men were assigned a female sex at birth
and identify as male or masculine. Transfeminine persons and transmasculine persons are
alternative terms for trans women and men, respectively. We do not use or recommend terms
that emphasize birth-assigned sex over gender identity, such as male-to-female or femaleto-male. Transgender is distinct from intersex, which is a term for individuals born with
biological sex characteristics that are not typically male or female. Cisgender is the opposite

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Counting Trans People In: Advancing Global Data Collection On Transgender Communities And HIV

of transgender, and is an adjective


for individuals whose gender identity
matches their assigned sex at birth.
Transgender and related terms are
rooted in Euro-American conceptions of
gender, although they are increasingly
used globally. Many other culturallyspecific terms for trans people exist
including, but not limited to: hijra (India,
Pakistan, and Bangladesh), kathoey
(Thailand, Laos), waria (Indonesia), meti
(Nepal), transpinay (Phillipines), faafine
(Samoa), two spirit (Indigenous North America), muxe (Mexico), travesti (Latin America),
shost (Tanzania), baboi (Zambia), stabane (South Africa).7,8 These terms are not necessarily
interchangeable with trans, and may or may not be preferred by community membersthey
may even be offensive in some cases. Local community consultation is required to ensure
terminology is respectful and accurate.

What data are currently available?


How many people are trans?
The estimated size of a population affected by HIV informs resource allocation and provides
the denominator required for assessing the extent of service coverage and the impact of
interventions.9 For populations that face stigma and are not easy identified through traditional
demographic methods, size estimation is challenging. In high-income countries, a few
population-based surveys have included items to identify trans and/or gender non-conforming
individuals, finding that between 1 in 100 and 1 in 1000 people could be classified as trans.10-13 In
Nepal and India, third gender options were added to the 2011 census. In theory, populationbased surveys and censuses are the most sensitive way to collect population size data.
However, they will only capture individuals willing and able to disclose their trans status to an
interviewer and therefore surely underestimate the size of trans populations.
As part of the HIV response, program data, surveys, and mapping exercises are employed
to generate estimates of the size of key populations at high risk of HIV.9,15 As all available
methods have limitations, they are ideally used in combination to generate a range of size
estimates. In Asia and the Pacific, some countries have publicly reported trans population

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Counting Trans People In: Advancing Global Data Collection On Transgender Communities And HIV

size estimates,16 but details on the methods used are scarce. While it is usually unclear
which subpopulations were included, available information indicates that most estimates
are based only on trans women, and often only those who are sex workers. As a proportion
of the 15- to 64- year old population of each country, reported estimates vary widely, from
approximately 8 per 100,000 (India) to 164 per 100,000 (Thailand).16 Stakeholders interviewed
for this brief thought that the implementation of most existing population size estimates
was of low quality. Invalid, unclear, or inconsistent population size estimates lead to faulty
conclusions about the magnitude of HIV burden and success of the HIV response, and make
it more difficult to obtain funding for trans health and HIV programs.15

What is the burden of HIV among trans women?


Basic epidemiological data, while insufficient
on their own, are a necessary starting point.9
A meta-analysis of peer-reviewed reports on
laboratory-confirmed HIV seroprevalence
among trans women from 2000-2011
estimated that globally, 19.1% of trans women
were living with HIV.5 Data were only available
for five high-income and ten middle-income
countries with male-predominant epidemics.
Within countries, data are concentrated in a
small number of urban locales. HIV incidence
estimates (the number of new infections over
a given time period) for trans populations are
incredibly rare despite their superiority for
monitoring the evolution of HIV epidemics.

Across 15 countries,

19.1%

of trans women were


living with HIV

In addition to peer-reviewed research, many countries report national or sub-national estimates


based on Integrated Behavioral and Biological Surveys (IBBS) and sentinel surveillance with
key populations, explicitly including trans people in some cases. Beginning in 2014, the UNAIDS
Global Progress Reporting program added optional disaggregation by transgender status (but
not disaggregated by birth-assigned sex) to the indicators requested for sex workers.17 As of
December 2015, reported data for trans sex workers could be located for 22 countriesall but
one in Asia and the Pacific or Latin America. These data are sometimes challenged by small
sample sizes and unclear operational definitions of trans sex workers.

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Counting Trans People In: Advancing Global Data Collection On Transgender Communities And HIV

The following section summarizes the availability of data on the HIV disease burden among
trans women in each major region. Given the particular lack of data on HIV among trans
men and gender non-conforming people, they are addressed separately on page 12.
Trans-specific quantitative studies have not yet been conducted in East, West, Central, or
Southern Africa, and trans people have most often been overlooked in HIV data collection
across the continent.18 However, data are available from recent studies focused on men who
have sex with men (MSM) that include questions about both sex assigned at birth and gender
identity.19-21 Wherever these questions have been asked, researchers have found that anywhere
from 8-25% of study participants report being assigned male at birth, but in fact identify as
women. In the Middle East and North Africa, trans-specific quantitative data are unavailable,
and studies that have included trans women have failed to disaggregate data. Therefore, no data
on HIV among trans people are publicly available from the MENA region. It is likely that some of
the data reported for male sex workers and MSM are in fact from trans women.
BOX 1: Data Collection in West and Southern Africa
Data that allow for separate analysis of trans respondents have been collected in
at least seven countries in West and Southern Africa: Burkina Faso, Cte dIvoire,
Gambia, Lesotho, Malawi, Swaziland, and Togo. 19,20 In recent respondent-driven
sampling studies of individuals who were assigned a male sex at birth and who
have sex with men in three West African countries, participants were asked to
describe their gender identity (S. Stahlman & S. Baral, personal communication,
4 Dec 2015). Consistent with previous findings in the region, trans women
comprised 17% of participants, and had higher HIV prevalence. Contrary to some
assumptions, female identification was independent of sexual position (i.e., trans
women were not necessarily receptive partners in anal intercourse). Very few
identified with the term transgender, but rather identified as women, highlighting
the importance of two-step assessment of sex assigned at birth and current
gender identity. Inclusion of two-step measures across countries enabled
separate analyses focused on trans women, using data pooled across sites.
Stakeholders noted that as trans communities in the region increasingly form
autonomous organizations and social networks, trans-specific research becomes
more feasible. In 2016, a bio-behavioral survey on HIV prevalence among trans
women will be conducted in three South African cities, in partnership with local
trans organizations.

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Counting Trans People In: Advancing Global Data Collection On Transgender Communities And HIV

In Asia and the Pacific, available data are concentrated in South and Southeast Asian low- and
middle-income countries, and such data are often collected as part of MSM-focused studies.22
While only a few trans-specific studies have been fielded in countries including Thailand23 and
India,24 the amount of trans-specific research in the region is growing. However, only a handful
of studies related to HIV among trans women are available in China,25 in most of the regions
high-income countries, and in the Pacific. A number of countries (Bangladesh, Cambodia, Fiji,
India, Indonesia, Laos, Malaysia, Pakistan, Papua New Guinea, Philippines) have reported HIV
prevalence estimates for trans (women) sex workers.16 Interpretation of data from this region is
challenged by a multitude of trans identities, and the overlap between some of those identities
and non-transgender, sexual minority identities.

BOX 2: Collecting Data on Gender Identity in Nepal


Despite inclusion of a third gender option, Nepals 2011 census failed to produce
usable data on trans people due to limited training and stigma among enumerators.
In response, the Williams Institute at the University of California, Los Angeles and
Nepals Blue Diamond Society (BDS) partnered to implement a survey of Nepalese
sexual and gender minorities. 14 Manisha Dhakal of BDS explains that although the
term third gender refers to trans people, it is often applied to all LGBTI (lesbian,
gay, bisexual, transgender, intersex) people in Nepal. The survey assessed selfidentification, behaviour, and attraction related to gender and sexuality, using
both Nepali and English terms. Among 1,178 respondents, 21 identity terms were
used. The majority of respondents identified with a term that references gender
non-conformity, and about half identified with the term third gender. Given that
some sexual minority (e.g., lesbian or gay)
individuals may have described themselves
with this term, it is difficult to disaggregate
the data by trans status. It appeared
uncommon for people to express binary
cross-sex identities; all but one of the
participants who identified their gender as
male or female were assigned that sex
at birth. The Nepali experience underscores
the need for methodological research on
measuring sex and gender and identifying
trans respondents across diverse cultures.

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Counting Trans People In: Advancing Global Data Collection On Transgender Communities And HIV

Almost no data are publicly available on HIV among trans people in Eastern Europe and
Central Asia, with the exception of a single HIV prevalence data point reported in Serbia
for 2013. 26 In the absence of appropriate measurement of gender identity, data on trans
people are likely conflated with data from MSM. A recent study of MSM and trans women
in Mongolia inquired about assigned sex at birth and gender identity, and found that 11% of
participants were trans. 27
Despite a long tradition of medical and psychological research on trans people in Western
Europe, surprisingly limited data exist on the burden of HIV among trans people in Western and
Central Europe. In a meta-analysis of HIV sero-prevalence research published from 2000-2011,
the only countries in the region with data available were Italy, the Netherlands, and Spain.5 All
were samples of trans women sex workers, primarily immigrants from Latin America.28 Trans
people are most often invisible in HIV surveillance data. Stakeholders described having to rely on
data from the United States, which are unlikely to generalize to Europe. However, data collection
on current gender identity was recently added to HIV surveillance in the United Kingdom, and
will be introduced to public sexual health services in 2016.
The majority of research on transgender health and HIV has been conducted in North
America, primarily in the United States of America. Nevertheless, most data come from
a few large urban centers, particularly Los Angeles and San Francisco, California, where
many studies have been conducted and public health surveillance data for trans women
are the most extensive. 29,30 The U.S. Centers for Disease Control collect disaggregated data
on trans people at CDC-funded testing sites, 31 and have added an optional current gender
identity field to their case reporting tool for state governments. California, 32 Michigan, 33
and New York State 34 collect and report gender identity data, but efforts are required to
improve ascertainment of sex and gender in testing encounters. In Canada, only selfreported prevalence data are available. 35 Finally, substantial amounts of data are collected
in administrative and programmatic databases held by government agencies, but only a
fraction are publicly available.
Data collection on trans people and HIV occurs in many countries in Latin America, while
quantitative data are almost entirely absent for the Caribbean. Most data are collected as
part of MSM-focused studies, but trans-specific studies have been conducted in Brazil, 36
El Salvador, 37 Mexico, 38 and Peru. 39 Country reports to UNAIDS include HIV prevalence
estimates for trans sex workers in Argentina, Bolivia, Colombia, Ecuador, Guyana, Honduras,
Mexico, Panama, Paraguay, Peru, and Uruguay. 26 Data are primarily available from urban
areas in these countries, and sample sizes are sometimes inadequate (e.g., 62 in Managua,
Nicaragua 40). Interpretation of existing data is challenged by conflation of trans women and
trans sex workers.

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Counting Trans People In: Advancing Global Data Collection On Transgender Communities And HIV

What is the burden of HIV among trans men?

In the many
countries where
trans programs
are entirely funded
by HIV donors,
trans men are in
effect excluded
from all trans
health research.

Trans men have been excluded from HIV-related


data collection in most of the world, with the
exception of small studies focused on trans men
in North America. Promisingly, small samples
of trans men who have sex with men have been
included in some recent MSM studies beyond
North America. 41,42 Where data do exist on HIV
prevalence among trans men who have sex with
men, self-reported HIV prevalence is often higher
than among other reproductive-age adults. 43-46
Moreover, trans men may belong to other key
populations, such as sex workers and people who
use injection drugs. In countries with generalized
epidemics where sexual violence affecting trans
men is prevalent, HIV risk may be elevated for
trans men of all sexual orientations. In 2014
guidance, UNAIDS recommended data collection
for both trans women and men. 47 Nevertheless,
stakeholders reported that HIV-focused donors discouraged or disallowed them from
extending their outreach or data collection efforts to trans men. In the many countries
where trans programs are entirely funded by HIV donors, trans men are in effect excluded
from all trans health research.

What is the burden of HIV among gender non-conforming people?


Disaggregated data are scarce for trans people who identify as neither men nor women.
Many forms or questionnaires that do identify trans people only have options to identify trans
men or women. Community-based data collectors will sometimes allow individuals to write
in a gender identity of their choosing. These data can be difficult to categorize, and the
need for quantitative data summaries often results in collapsing trans participants into two
groups based on assigned sex at birth. When sample sizes have been sufficient to separate
out those with non-binary identities, important differences have been found. For example, in
a large U.S. trans survey, gender non-conforming people experienced higher levels of antitransgender violence and were somewhat more likely to report being HIV-positive. 48

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Counting Trans People In: Advancing Global Data Collection On Transgender Communities And HIV

Disaggregation of data from sex workers


Many trans women living with HIV have never been
sex workers, and many trans sex workers are HIVnegative. In addition, HIV risk is high among trans
women who have sex with men regardless of sex work
history, 49 though higher among trans sex workers. 50
However, it can be challenging to draw conclusions
about the relative HIV burdens because data from
sex workers and non-sex workers are infrequently
disaggregated. 51 Related to widespread discrimination
and exclusion from the formal labor market, sex work
is indeed common among trans women, particularly
in Asia and Latin America, but is not universal. For
example, estimates of the prevalence of sex work
in Asia range from 36% in Cambodia to 90% in
India. 40 However, sampling methods that are most
efficient for accruing samples of trans women are
likely to over-represent sex workers, complicating
interpretation. Sex work among trans men should also
be considered; 7-15% reported sex work experience in
some North American surveys. 35,50

What do we know about other key indicators for


HIV prevention, treatment, and care?

HIV risk is high


among trans women
who have sex with
men regardless of
sex work history,
though higher among
trans sex workers.
However, it can be
challenging to draw
conclusions about
the relative HIV
burdens because data
from sex workers
and non-sex workers
are infrequently
disaggregated.

Despite their limitations, data on HIV prevalence


among trans women are relatively robust
in comparison to data on other key issues.
Recommended indicators for data collection in
trans populations include: biological determinants
of HIV transmission risk; sexual and injection risk
behaviors; access to HIV and general health services; the HIV care continuum; and critical
enablers for HIV prevention such as community engagement, access to justice, stigma, and
violence. 3,47,52 In most regions, data on these fundamental indicators are absent, limited, or
of dubious quality. Across the following themes, stakeholders consistently identified need
for systematic reviews and syntheses of existing data.

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Counting Trans People In: Advancing Global Data Collection On Transgender Communities And HIV

The HIV care and treatment continuum, from diagnosis to viral suppression.
Data on uptake of HIV and other sexually transmitted infection (STI) testing within trans
communities have not been consistently collected or summarized. That the burden of HIV
among trans women is much higher when laboratory-confirmed versus self-reported data
are employed53 indicates substantial levels of undiagnosed HIV, and underscores the need to
investigate barriers to testing. Coverage of testing for other STIs, particularly where more
invasive screening is required (e.g., rectal or cervical swabs) may be even more inadequate
among trans people, but few data are available. With respect to engagement and retention
in HIV care among trans people living with HIV, in a 2014 review, no studies were found from
outside the United States. 54 In the U.S., some evidence suggests that trans women living
with HIV may have poorer outcomes across the continuum of care, being less likely to be
engaged and retained in care, to receive antiretroviral therapy (ART), be adherent to ART,
and achieve sustained viral suppression. 29,30,55

Access to other health services. Outside of a small number of countries (e.g., Canada,56
Thailand,23 Laos,57 and the United States58), data appear to be scarce on access to genderaffirming care including hormones and surgery. These are often the health care services of
highest priority to trans communities, and have the potential to facilitate use of HIV services.59
Quantitative data are lacking in the very settings where access to gender affirming care is
most restricted, such as countries
where gender-affirming surgery
Countries with Data on Access
is unavailable. Stakeholders
to Gender-Affirming Care
highlighted the efforts of community
organizations to fill these knowledge
gaps,60 but noted the potential to
collect these data as part of ongoing
HIV surveillance and research.
Data on access to, and experiences
of stigma within, primary health
care services have primarily been
Data publicly available
collected in North America.58,61

Sexual and injection risk behaviors. Behavioral questionnaires used with trans
populations often inquire about condom use for anal intercourse only. While most
trans women do not have access to genital surgery, for those who do, HIV risk related
to receptive vaginal intercourse is seldom captured. For trans men, this is especially
problematic as much of their HIV risk appears related to vaginal intercourse. 35 Few
studies inquire about injection of drugs, hormones, silicone, or other soft tissue fillers.62
When hormone use or injection data are collected, binary assessment of hormone use

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Counting Trans People In: Advancing Global Data Collection On Transgender Communities And HIV

or injection is common. Data are needed


on access to sterile injection equipment,
risks associated with injection, sources of
hormones (e.g., prescribed, purchased from
the illicit market), and access to medical
monitoring. These issues have been
examined in a number of Southeast Asian
countries, where the inaccessibility of
medically supervised hormone therapy puts
the health of trans people at risk, 57 and in
Latin America, where unsafe silicone injection
is widespread. 39

Critical enablers for the HIV response.

Data on violence,
stigma, and
discriminationkey
indicators required to
assess the potential
for an effective HIV
response3are often
collected through
community surveys.
Greater resources for
such community-led
research and better
integration with data
collection on HIVrelated outcomes
are required.

Mapping of the legal, social, and political


context for trans people varies greatly by
region. Most publicly accessible data are
from high-income countries, with some from
Southeast Asia and Latin America. 63 Data
on violence, stigma, and discriminationkey
indicators required to assess the potential
for an effective HIV response 3 are often
collected through community surveys. 58,64
Greater resources for such community-led
research and better integration with data
collection on HIV-related outcomes are
required. Lack of access to documentation
matching ones lived gender is the norm
for most trans people globally, 65 and may
increase vulnerability to HIV and limit access
to care. 66 Yet, with few exceptions, 67 access to
identification is not currently considered in
HIV-related data collection. Similarly, community-level protective factors for HIV risk such
as collective efficacy are rarely assessed, within only one data point available in a low or
middle-income country. 66

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Counting Trans People In: Advancing Global Data Collection On Transgender Communities And HIV

Methodological issues in trans data collection


There are a number
of ways in which a
trans population can
be defined for data
collection. Each of
these definitions
will correspond
to different, but
overlapping, groups
of trans people.

Collecting high-quality data on trans


health and HIV requires a culturally
relevant operational definition of the
trans population of interest, questions
that allow for the identification and
description of trans individuals,
and a sampling strategy that can
reach members of the defined trans
population. The following section
explores current practices and
challenges in each of these areas.

Operational definitions of trans in


diverse cultural contexts. There

are a number of ways in which a


trans population can be defined for
data collection: self-identification as
transgender or a similar term, reporting
a gender identity that differs from
birth-assigned sex, using feminizing or
masculinizing hormones, undergoing
gender affirmation surgery, or changing ones name and sex marker on identification. Each
of these definitions will correspond to different, but overlapping, groups of trans people.

BOX 2: Disaggregating trans data in the iPrEx study


Representation of trans women in pre-exposure prophylaxis (PrEP) research
has been relatively poor,68 but a new analysis of the iPrEx randomized controlled
trial and open-label observational study (iPrEx OLE) shows that data were
collected from more trans women than previously thought.69 The studies were
conducted with individuals assigned male at birth in Brazil, Ecuador, Peru, South
Africa, Thailand, and the United States. Gender identity was assessed with two
questions by computer-assisted self-interview: (1) gender as male or female

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and (2) identification as a man, woman, or transgender (travesti was later


added in Ecuador to reflect local terminology). Feminizing hormone use was
assessed at study visits. The authors conducted an analysis of PrEP efficacy,
effectiveness, and adherence among trans women, defined as participants who
met one or more of these criteria: identification as a woman; identification as
trans; reported use of feminizing hormones. Dr. Madeline Deutsch of the Center
of Excellence in Transgender Health at the University of San Francisco, California
and lead author of the paper, explained:
If you identify as a gay male but have presented as female every day for
the last 15 years, you are experiencing social determinants of health and
disparities related to [trans]gender identity and presentation, regardless
of how you internally identify. We dont want to force identities on
people, but if someone is presenting as female we should group them
based on their lived experience.
175 trans women were identified in the first analysis of iPrEx OLE,70 and 192 in
this analysis. Across both phases there were 339 trans participants (14% of all
participants). Most of those individuals (86%) identified as transgender, with the
remainder split between those who identified only as women, and those who
were male-identified but used hormones. The study found that while PrEP was
effective for trans women who used it, their adherence was lower than that of
other iPrEx participants.

Comparing trans health and HIV data across settings is made difficult by the numerous
definitions of trans or transgender employed. Ninety-five definitions were found in 116
studies from 2008-2014. 4 Often, samples of transgender women could be more accurately
described samples of trans women who are sexually active with cisgender men and/or sex
workers. In light of the epidemiology of HIV, research focused on these subgroups should
be prioritized. More precise descriptions of the populations under study, however, are
important for ensuring that resources are allocated to groups that require them, and to
acknowledge diversity among trans women.

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In Asia and the Pacific, fluidity and overlap of culturally-specific gender and sexual identities
is common, and thus it can be challenging to enforce rigid operational definitions of
transgender.62 It is relatively straightforward to categorize people as trans if they identify as
trans, transgender, or as women assigned male at birth. It is less clear how to categorize
people who identify, for example, as long hair MSM in Cambodia,16 particularly in the
absence of an a priori definition of the trans population of interest. Stakeholders from the
region observed that in some settings (e.g., in some Pacific nations) communities do not
differentiate between sexual and gender minorities, and find the distinction requested by
researchers to be an imposition. On the other hand, in South Asia, hijra and transgender
are often used interchangeably in data collection and reporting, but these do not describe
equivalent concepts or populations. 24 In the South Asian context, it is important to decide
whether and how to include those who are part of gender non-conforming spiritual or
cultural traditions, and may not be connected to trans networks.

While these obstacles


to ascertaining trans
status cannot be
entirely overcome in
a stigmatizing social
environment, they can
be mitigated through
careful and respectful
data collection
practices.

Questions to identify trans people


in data. Many reports on data collection

activities with trans people provide no


details on how trans people were identified
and categorized. Stakeholders reported that
many ongoing research and surveillance
activities continue to use suboptimal
methods for identifying trans individuals.
For example, they may ask if participants
in an IBBS survey of people assigned
male at birth identify as gay, bisexual,
or transgender, despite the fact that a
person may identify as both transgender
and gay or bisexual. In many countries,
identification with the term transgender
is relatively rare, so this type of question
will result in substantial misclassification of
trans people. In addition, trans people may
be hesitant to disclose their trans identity
or history of gender transition due to
stigma, and/or because they live as men or
women and consider gender transition an irrelevant detail of their past. While these obstacles to
ascertaining trans status cannot be entirely overcome in a stigmatizing social environment, they
can be mitigated through careful and respectful data collection practices.

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Counting Trans People In: Advancing Global Data Collection On Transgender Communities And HIV

The current best practice for ascertaining


gender identity and trans status is known
as the two-step method,71,72 in which
both sex assigned at birth and current
gender identity are assessed. This method
has high sensitivity (correctly identifies
trans respondents) and specificity (does
not incorrectly identify cisgender people
as trans) with adults in the United States.
It identifies individuals who descibe
themselves with trans-specific terms,
as well as those who have a cross-sex
identity (e.g., identifies as male but
assigned female at birth). Inquiring about
gender identity before assigned sex may
enhance comfort for trans respondents,
and thus improve data quality.

The current best


practice for
ascertaining gender
identity and trans
status is known as the
two-step method
in which both sex
assigned at birth and
current gender identity
are assessed.

Stakeholders described successful use


of this approach for identifying trans
respondents in broader population surveys,
categorizing gender identity and birth-assigned sex in trans-only samples, and collecting
data in clinical settings for surveillance or administrative use. This method has been
formally evaluated in the United States,72-74 and among trans people and MSM using Spanish
and Portuguese sexual networking websites. 42 Stakeholder consultation and qualitative
research are required to identify which gender identity options should be offered, based on
local terminology. Instructions to respondents should also be developed and evaluated for
clarity (for example, to explain what is meant by gender). Depending on research aims,
questions on other gender and sex characteristics (e.g., hormone use, gender presentation
in daily life) may be essential for interpreting findings.75 Questions to be used in studies that
include cisgender individuals require validation in cisgender populations as well; to avoid
misclassification, measures need to be simple and clear.75

Sampling and data collection methods. Probability-based samples such as random


household surveys are the gold standard for sampling, but are not feasible for trans
health research in most settings. In research with key populations, adaptive probabilitybased sampling methods have been introduced, in the forms of time-location sampling
(TLS) and respondent-driven sampling (RDS). The details of these methods are described

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Counting Trans People In: Advancing Global Data Collection On Transgender Communities And HIV

elsewhere.76 RDS has been used more frequently with trans populations, and while not
perfect, likely introduces less bias than TLS. The latter relies on recruitment in venues
with high traffic from the target population, which for trans women, are often sex work
venues. RDS has been successfully used in studies of trans people in Canada, 35 and trans
women in the United States,77 Peru, 39 and Brazil. 36 Trans women have also been recruited
through RDS studies focused on MSM, providing valuable information in settings where
trans-specific data are unavailable. However, in addition to other limitations, sampling trans
women through MSM networks will exclude those who are not connected to MSM, such
as those who have transitioned and do not disclose their trans history publicly. Partially
addressing this concern, in some cases, trans women have been intentionally selected as
seed participants.
Most trans health and HIV research
continues to rely on convenience
sampling from community organizations,
social networks, and health services.
Sample sizes for these studies are
often unacceptably small. For instance,
in two meta-analyses conducted in
the past decade, sample sizes were
smaller than 100 in 40% 49 and 48% 53 of
included studies. Large, online surveys
are increasingly feasible and have been
carried out with trans communities
across North America, Oceania, and
Western Europe. However, analysis of
mixed-mode (online and in-person)
data collection suggests that onlineonly surveys will under-represent trans
78
people most at risk of HIV. Self-administered or complex questionnaires may also lead to
under-sampling of trans people who have low literacy in the language of administration.

Sample sizes are often


unacceptably small:
in two meta-analyses
conducted in the past
decade, sample sizes
were smaller than 100
in 40% and 48% of
included studies.

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Counting Trans People In: Advancing Global Data Collection On Transgender Communities And HIV
Counting Trans People In: Advancing Global Data Collection On Transgender Communities And HIV

Recommendations
1. Guided by trans communities, collect and report disaggregated data on the continuum
of HIV prevention, care, and treatment 9 among trans people in your municipality,
country, and region.
Local trans communities must be meaningfully engaged to ensure that data collection
approaches are respectful, acceptable, and do not threaten the safety of trans people.
Access to heath services and freedom from violence and criminalization must be prioritized
over data needs.
Considerations for collection
a. Include fields for both current gender identity and assigned sex at birth in all data
sources that contribute to estimates. Trans people can be identified as those who
indicate a gender identity that differs from birth sex, whether or not they identify with
a term such as transgender.72 For example, a trans woman might report her gender
identity as female and her birth-assigned sex as male.

Consult with communities to determine appropriate response options for gender


identity. Recommendations for the United States are available, and potentially
suitable for similar cultural contexts.72

Add definitions of gender-related terms to manuals and implementation instructions,


and provide training to data collectors on asking these questions.14

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Counting Trans People In: Advancing Global Data Collection On Transgender Communities And HIV

b. Inquire directly about sex work status whenever possible; do not automatically
categorize all trans women as sex workers.
c. Population size estimation should be undertaken following best practice, ideally
employing multiple methods for triangulation.9,15 The safety of community members
is paramount, and specific issues for sex workers must be considered and addressed
before undertaking enumeration research.79 Size estimates should be reported
alongside details regarding excluded subpopulations and methodological limitations.
Considerations for analysis and reporting
a. Whenever possible, report data disaggregated by gender spectrum (assigned male versus
female at birth, or trans women and men), age group, and sex work status.52,80 Where HIV
burden and outcomes are known to vary by race/ethnicity, report data disaggregated by
relevant racial and ethnic categories. Do not collapse data for trans women and men.
b. In all publications, describe the questions or data elements used to identify trans
individuals.
c. To maximize sample size, consider combining data across time points and
jurisdictions. Consistent wording of questions to identify trans respondents will
facilitate data pooling.72
2. Do not pool data from trans women and men who have sex with men (MSM).
Trans women are women, and not a subgroup of MSM. Their networks may overlap with
those of MSM, particularly in settings where autonomous trans networks are newly
emerging. However, trans women accessible via MSM networks represent an unknown
fraction of the total trans population. Therefore, we recommend trans-specific data
collection whenever possible (see Recommendation 4). Irrespective of how data are
collected, they should be disaggregated in analyses using gender identity and birthassigned sex variables. In addition to making trans women and their health needs
invisible, aggregated analyses of data from MSM and trans women reduce the quality and
validity of data on MSM, 81 and may inflate estimates of HIV prevalence among MSM.
3. Collect data on trans mens health needs, including but not limited to HIV.
Trans men are excluded from trans health research in many countries because they are believed
to be at low risk of HIV. There is little evidence to support this claim, precisely because trans
men have been excluded from research. Regardless of their level of HIV risk, data collection is
needed on the myriad health issues facing trans men (e.g., mental health). When broader health

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Counting Trans People In: Advancing Global Data Collection On Transgender Communities And HIV

and social data are being collected from trans people, exclusion of trans men runs counter to
the principle of holistically addressing health and development challenges.
Trans men who have sex with men may identify with and participate in MSM communities
and sexual networks, 42,82,83 and should be considered for inclusion in MSM data collection
using the two-step method.84 Trans men should be consulted in decisions regarding their
inclusion.
4. Carry out trans-specific research, employing explicit operational definitions of
transgender (or alternative culturally-specific terms) that are concordant with
local community definitions. 28
Consider network-based sampling methods such as respondent-driven sampling, instead
of venue-based recruitment. The need for larger samples of trans people has been widely
noted, and trans-specific studies are the best way to accomplish this.
To increase acceptability and relevance, this research should consider HIV alongside
other health conditions. 4 Specific topics for such research should be based on globally
recommended indicators as well as community data needs and priorities, but could include:

Discrimination, violence, and access to justice: these are community priorities and must be
addressed to enable successful HIV prevention and treatment85

Access to gender-affirming care, including in relation to HIV risk and the care continuum
Encounters with anti-transgender stigma in health services9
Socioeconomic conditions that may potentiate or reduce HIV vulnerability, including housing
situation, family support or rejection, employment, and income
5. Engage trans communities in developing and implementing data collection activities.
Trans people should be meaningfully involved at all stages of data collection, from
conceptualization to presentation of findings. As part of the ethical review process for
proposed research, community involvement should be assessed and mandated. Meaningful
involvement requires soliciting and incorporating feedback on research aims and outcomes
to be measured. Even if some outcomes are pre-determined, questions can be added to
address community priorities. Community engagement is the best way to develop buy-in,
which is critical for recruitment and promotion. Ideally, meaningful involvement will include
creation of capacity-building and employment opportunities for trans people. This serves
the dual purposes of economic empowerment and improving data quality.

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Counting Trans People In: Advancing Global Data Collection On Transgender Communities And HIV

6. Synthesize and disseminate the evidence that we already have.


With the exception of HIV prevalence among trans women, data on trans health have
rarely been systematically synthesized and made available in accessible formats.
Advocates, program implementers, and policy-makers would benefit from a searchable
online database on trans health and HIV, including data on structural factors and critical
enablers. Such a database should include summaries of limitations of these data to avoid
over-interpretation by end users.
7. Provide technical guidance and assistance for trans data collection.
This will require investment in methodological research to understand how gender identities
are described, and can best be measured, in diverse cultural contexts and languages.62 Recent
investment towards enhancing the HIV response for trans people has resulted in a series
of important and helpful programmatic and policy guidance documents. 47,80,86 Each of these
documents recommends greater quantity and quality of data collection, but detailed technical
guidance and assistance will be required to realize these goals, particularly for monitoring
and evaluation personnel who may be quite unfamiliar with trans communities. Such technical
assistance might begin with training on trans issues for national health sector staff and others
who will be responsible for carrying out trans-inclusive data collection.
8. Donors and funders: adequately fund trans data collection and hold recipients
accountable for trans inclusion.
Stakeholders described being stuck in a cycle of invisibility and inaction: because of a lack
of local data, some funders are reluctant to support trans-specific programs. Yet, such
programs are required to create an enabling environment for data collection, and are
best situated to support effective data collection (see Recommendation 5). Thus, funders
should support data collection on HIV, alongside assessment of the social, legal, and
political environment prioritizing settings where data do not yet exist. Beyond supporting
trans-focused research, funders can implement policies to require demonstration of
trans inclusion (or a legitimate rationale for exclusion) to obtain research funding. Donors
can invest strategically to enhance trans inclusion by requiring that recipientsbe they
organizations or governmentsreport on key indicators related to trans health.

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Counting Trans People In: Advancing Global Data Collection On Transgender Communities And HIV

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IRGT: A Global Network of Transgender Women & HIV


31

The IRGT, a Global Network of Trans Women and HIV composed


of members from diverse parts of the world, is responsible for
initiating and promoting advocacy on trans health and rights as they
relate to HIV/AIDS. The group is comprised of advocates, service
implementers, researchers, and other health and rights experts
from different regions of the world, including Africa, India, South
America, North America, Asia, and Europe. The IRGT is hosted and
supported by the MSMGF.

Design and Layout: Querido Galdo

For more information, please contact Co-Chair Amitava Sarkar


at amitavaactivist@gmail.com or Co-Chair JoAnne Keatley
at joakeatley@yahoo.com

Counting Trans People In: Advancing Global Data Collection


on Transgender Communities and HIV
February 2016

Copyright 2016 by the IRGT, a Global Network of Trans Women and HIV
and the Global Forum on MSM and HIV (MSMGF)

436 14th Street, Suite 100. Oakland CA 94612


transglobalactivism.org | +1.510.359.4518