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Ferguson
Ferguson
Leaving No One Behind: Human Rights and Gender as HHR_final_logo_alone.indd 1 10/19/15 10:53 AM
Abstract
Experience has shown the need to explicitly address human rights and gender-related barriers in the
This paper brings to light rights and gender considerations relevant to supporting U=U, recognizing a
range of barriers that remain to be addressed for all people to benefit equally from U=U. We conducted
a literature review to ascertain how human rights and gender were addressed in relevant publications,
including peer-reviewed articles published between 2006 and 2020, relevant nongovernmental and
global organizations’ publications, and abstracts presented at the 2019 International AIDS Conference,
that explicitly addressed U=U or “treatment as prevention.” Despite evidence to illustrate the importance
of attention to human rights and gender within U=U policies and interventions, there remains a lack of
explicit attention to human rights and gender considerations in research and programming, particularly
with regard to the rights principles of participation and accountability. Explicitly engaging all of these
dimensions is key to informing interventions and improving people’s lives, health, and well-being.
Laura Ferguson, PhD, SM, MA, is the research director at the USC Institute on Inequalities in Global Health, University of Southern California,
Los Angeles, United States.
William Jardell, MPH, is a program specialist in the USC Institute on Inequalities in Global Health, University of Southern California, Los
Angeles, United States.
Sofia Gruskin, JD, MIA, is the director of the USC Institute on Inequalities in Global Health, University of Southern California, Los Angeles,
United States.
Please address correspondence Laura Ferguson. Email: laura.ferguson@med.usc.edu.
Competing interests: None declared.
Copyright © 2022 Ferguson, Jardell, and Gruskin. This is an open access article distributed under the terms of the Creative Commons Attribution
Non-Commercial License (http://creativecommons.org/licenses/by-nc/4.0/), which permits unrestricted noncommercial use, distribution, and
reproduction in any medium, provided the original author and source are credited.
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Overview of human rights and gender of the structural barriers that impede equitable
considerations in HIV programming access and use of HIV-related services are likely to
remain in place, unchallenged, and unaddressed
Attention to rights considerations and gender even if ART is available. On the flip side, systematic
equality have long been recognized as integral to efforts to address gender-related barriers are a key
an effective HIV response, even as this recognition
step in ensuring that these strategies can work for
may be more evident on paper than in practice.
everyone.11
We take as our starting point that human rights
and gender are synergistic frameworks, noting in
particular the ways in which gender equality can Methods
effectively be promoted through human rights re-
Documents from global organizations that pro-
alization; if both are taken into account, this can
vide guidance and funds for ART provision were
help ensure that U=U works for all its intended
analyzed to determine their approach to U=U. The
beneficiaries.
organizations and initiatives considered included
The application of human rights principles to
the World Health Organization (WHO), UNAIDS,
HIV research and programming brings a number
the Global Fund to Fight AIDS, Tuberculosis and
of issues into play. In the first instance, the legal
Malaria (the Global Fund), and the US President’s
and policy environment is known to shape the
Emergency Plan For AIDS Relief. Statements,
availability of HIV-related services and programs
guidelines, and other documents from leading
and the degree to which they can be responsive to
nongovernmental organizations (NGOs) dealing
individual needs and aspirations.8 With respect
to U=U, consideration of human rights principles with U=U policy and programming were also re-
alongside efforts to strengthen the legal and poli- viewed to examine how these organizations discuss
cy environment can help identify and overcome U=U, with a focus on their approach to human
challenges to increasing and sustaining access to rights and gender. The inclusion of global organiza-
treatment and services for all people, as well as tions and NGOs in this review was not exhaustive;
promote accountability and transparency for what rather, we included only those most widely used
is done and how.9 across the field as the basis for U=U and TasP
To clarify the ways in which human rights recommendations.
form the basis of our analysis, Table 1 identifies In 2020, using PubMed, we conducted a litera-
the range of human rights principles commonly ture review of articles published between 2006 and
considered relevant to HIV responses and provides 2020. The search terms utilized included “U=U,”
a suggested overview of their relevance within the “TasP,” “treatment as prevention,” “gender,” “hu-
specific context of U=U. These rights then serve as man rights,” and “rights.” Articles met inclusion
subheadings for the grouping of information that criteria if they discussed TasP or U=U with at-
follows in the findings section. tention to gender or rights and were published in
Gender equality is a long-recognized cor- English. Each piece was evaluated to assess if and
nerstone of HIV responses, and there is wide how human rights and gender were addressed, and
recognition of the distinct barriers and challenges the ways in which recommendations included work
that women, men, transgender populations, and to promote the realization of human rights and
nonbinary populations face in relation to HIV gender equality in future programming. Abstracts
prevention and treatment. Gender norms and dy- that explicitly discussed U=U and TasP presented
namics are understood to affect access to resources at the 2019 International AIDS Conference were
and decision-making power, vulnerability to HIV also reviewed to understand new and emerging re-
infection, and people’s willingness and ability to search being done in the field. Data were extracted
access HIV-related services.10 With respect to U=U, and analyzed to determine if and how this range of
if gender norms and dynamics are ignored, many publications addressed gender and rights in order
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l. ferguson, w. jardell, and s. gruskin / general papers, 1-11
to understand the state of the field. No ethical re- barriers such as stigma and discrimination, in-
view was required for this work. equity, lack of accessibility, and weak data and
monitoring systems.14 The Global Fund discusses
rights—namely in relation to stigma and discrim-
Findings
ination, accountability for data, and the need to
Below, we provide an overview of how HIV-related address human-rights related barriers—in the
guidance documents published by global institu- design and delivery of products and programs.15
tions have considered human rights and gender The only one of these organizations to have issued
equality. We then offer a more granular analysis guidance on human rights specifically in relation to
of the extent to which and ways in which laws and U=U is UNAIDS. In its U=U Explainer, UNAIDS
policies, relevant human rights principles (see Table calls for the scale-up of comprehensive responses;
1), and gender norms and dynamics are addressed awareness and knowledge of U=U; access to af-
in documented U=U efforts. fordable, quality, stigma- and discrimination-free
testing and treatment; and the need to address
Global institutions’ general guidance unjust criminalization that violates human rights
National HIV responses are shaped by a variety of and deters people living with HIV from accessing
factors, including not only national legal and policy services.16
environments and social constructs but guidance
issued by global-level institutions. The approach Laws and policies
taken in these guidance documents strongly im- Addressing the legal and policy barriers that inhib-
pacts what is done and how it is done, including it the sustained access to treatment necessary for
the degree of national-level governments’ under- people living with HIV to achieve and maintain a
standing, and commitment to inclusion, of efforts suppressed viral load is key to U=U. Not only is the
to realize rights and promote gender equality in the criminalization of HIV transmission detrimental to
HIV response. WHO, UNAIDS, the Global Fund, the overall HIV response, but it has been shown to
and the US President’s Emergency Plan For AIDS be contrary to the science of U=U and to contribute
Relief each include, to varying degrees, attention to to fear and anxiety among people living with HIV
laws and human rights principles in their general in ways that have a direct impact on implementa-
HIV-related guidance, and, to some extent, there tion. U=U as a strategy can bring attention to the
is also mention of rights within their individual need for legal reform in the many contexts where
discussions of U=U and TasP.12 While these orga- HIV remains criminalized, and the promotion
nizations’ documents recognize the importance of U=U can be more systematically used to foster
of gender in terms of HIV, as well as the need to legal and policy changes, including the removal of
address gender dynamics in HIV programming, HIV-specific criminalization laws. Other types of
by 2020 only the Global Fund had noted the im- laws also create barriers to U=U, including laws
portance of addressing gender-related norms and that criminalize sex between men or the provision
dynamics in its U=U-specific guidance materials. of harm-reduction programs for people who use
The Global Fund notes that a biomedical approach drugs, because even if services are available these
to HIV is insufficient and that to promote U=U, can result in people being afraid to access them.17
it is critical to address the root causes of vulner- Removing laws that criminalize people living with
ability for women and key populations, as well as HIV and are otherwise vulnerable can also help
the barriers to accessing health services faced by shift public attitudes and reduce stigma, in turn
heterosexual men.13 helping support sustained access to treatment.18
Within its TasP guidance, WHO signals In addition to the legal environment, a range
the importance of a rights framework to treat of policies can impact the effectiveness of U=U. For
and eliminate HIV, highlighting rights-related example, national policies limiting comprehensive
sexuality education restrict access to basic informa- In line with its original intention, U=U can
tion about sex, sexuality, HIV, and HIV programs, serve as a means to begin to dismantle both external
which in turn can impact gender dynamics and and internalized stigma, as well as discrimination.
result in limited awareness of U=U among young Knowledge of U=U has been found to be associated
people and other key and vulnerable populations with lower anxiety and depression and reductions
even when these services are available.19 in internalized stigma among, for example, Latin
Policies relating to U=U in and of themselves American men who have sex with men.24 High-
can be both barriers and facilitators. A range of lighting the relevance of U=U to stigma reduction,
HIV-specific government policies can make it a study in Vietnam identified key success factors
impossible for people living with HIV to achieve that included government endorsement of the mes-
an undetectable viral load. For example, in 2019, sage, community leadership in campaigns at the
while 182 countries reported that ART can be ini- national, provincial, and city levels, efforts to bring
tiated irrespective of CD4 count, seven countries health workers on board, and having “champions”
reported not initiating ART until a client’s CD4 for the success of U=U.25
count dropped below 500 cells per cubic millime- Of concern, the withholding of information
ter.20 Thus, for some people living with HIV, U=U about U=U has been found to occur among some
is unattainable simply because of how government health care providers, particularly with patients
shapes relevant policy. Additional policies that from marginalized populations. Documented fac-
can either facilitate or hinder the accessibility of tors include not only lack of provider knowledge
treatment include the frequency of required clinic but disbelief in U=U, and negative and discrim-
visits, particularly when people live far from where inatory attitudes.26 In some settings, the medical
services are available, due to the time and costs community has been accused of withholding mes-
associated with multiple visits.21 saging from patients both because of their fears
Conversely, official government policies can that negligible risk of transmission is not zero risk
improve accessibility of treatment and remove bar- and because of their judgment that patients cannot
riers to access. For example, the removal of upfront be trusted with this information.27 In a 2013 study,
copayments for treatment or providing access to fewer than half of the women surveyed were told
free ART to all people living with HIV can radi- by their providers that having an undetectable viral
cally enhance access to the means of achieving an load was a form of prevention, even though most
undetectable viral load.22 were engaged in care and on a successful treatment
regimen; it goes without saying that this would
Participation have been useful information for them.28 While it
There is a noticeable lack of literature addressing is certainly hoped that things have improved since
participation specifically in the context of U=U. that time, the study results provide an important
While the language of “nothing about us without cautionary tale. Research in the United States in
us” and the concept of meaningful involvement of 2020 found that while Black men who have sex
communities permeate HIV responses, how this is with men expected their providers to initiate con-
operationalized within the context of U=U appears versations around HIV transmission and U=U, the
to be under-explored within the literature. stigmatizing and discriminatory attitudes of some
health providers made them less likely to share this
Equality and nondiscrimination information and decision-making power with their
Studies have long documented that stigma and Black clients.29
discrimination create barriers to accessing relevant
HIV information, treatment, and care. This has The right to health: Availability, accessibility,
been found to be true specifically in the context of acceptability, and quality of services
U=U.23 Within the health system, many different issues
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have been found to impact the success of U=U strat- condomless sex), and mental health services. The
egies. A human rights lens draws attention to the right to health reminds us that U=U cannot be
availability, accessibility, acceptability, and quality implemented in isolation. While U=U offers oppor-
of the HIV treatment services delivered, as well tunities for individuals to manage HIV and prevent
as the access that people have to the information onward transmission, these same individuals also
they need for informed decision-making, all with need access to quality health services in a range
significant implications for the success of any U=U of areas that can support their overall health and
strategy. These issues are, of course, also gendered, well-being, over and above the ability to reach and
with gender dynamics playing out and intersect- maintain viral suppression.32
ing in relation to each. For example, some women Resource constraints impacting HIV re-
may face challenges to accessing needed services sponses are real, whether driven by decreases or
if spousal permission is required, which might be limitations in donor funding, reluctance to fund
further exacerbated if they are responsible for work services related to HIV or sexual and reproductive
or child care within limited facility opening hours. health, or the inability to ensure the sustainability
Transgender people may not find services accept- of free treatment. Many settings have seen a move
able if they are unable to present according to their toward “AIDS fatigue” and decreases not only in
gender identity, or if they are not allowed to access funding but in political will, particularly in the
services if the gender marker on their identity doc- context of COVID-19. Even if a U=U strategy is
ument does not match how they live in the world. in place, funding shortfalls can negatively impact
Concerns have been raised about a potential service availability and accessibility, resulting in
disconnect between the dissemination of U=U drug stockouts, high costs, and a lack of consistent
messaging alongside the limited availability or and reliable (or indeed any) viral load testing, with
accessibility of ART in some contexts: achieving devastating impacts on clients even if appropriate
an undetectable viral load is contingent on the sus- policies are in place.33
tained accessibility of ART, so any such mismatch
must be addressed in U=U campaigns. There is a The right to health: Availability, accessibility,
need, therefore, to consider U=U interventions not acceptability, and quality of information
only on a country-by-country basis but at subna- An analysis across 25 countries found that people
tional levels, taking into account the health system living with HIV with adequate knowledge about
and in particular the sustained availability of free U=U, not surprisingly, had more favorable health
or affordable treatment and viral load monitor- outcomes, including in relation to mental health,
ing.30 Where ART is available and accessible, the sexual health, treatment satisfaction, and viral
acceptability of TasP has been found to increase suppression, than those who did not.34 Yet, barriers
with people’s direct exposure to its success, such as exist in the ability to access updated, comprehen-
with regular testing and exposure to positive testi- sive, and culturally tailored information about
monials disseminated in person or through mass U=U. The language used by researchers, NGOs,
media.31 global institutions, public health officials, and
Taking this one step further, there is a need to health care providers matters and impacts both
ensure the availability, accessibility, acceptability, attitudes and access to care: clarity and non-judg-
and quality of a wide range of health information mental messaging are always key.35
and services, including but not limited to HIV-spe- The science behind U=U tells us that negligible
cific services, to ensure the ultimate success of risk is zero risk in the context of sexual transmission.
U=U. This could include not only pre-exposure Since 2017, leading HIV scientists have promoted a
prophylaxis but family planning, information and semantic change and the use of phrasing such as
services related to sexually transmitted infections “effectively zero,” “no risk,” or “cannot transmit” to
and sexual health (including in the context of resolve earlier incorrect or biased communications
around U=U that may have prevented the medical in which providers acknowledged concern around
community from delivering information about risk providing information about U=U to patients for
of transmission being effectively zero.36 Even with fear of being blamed if transmission nonetheless
these semantic shifts, however, messages still need were to occur.41 Issues of accountability of pro-
to be tailored to individual contexts, communities, viders and other duty bearers for the provision of
clients, and partners. accurate U=U information and services to all who
The provision of accurate information re- need them remain to be better addressed.
garding U=U in health services is critical but so
too is education and messaging at the community Gender
level. Widespread understanding of U=U can help It seems that U=U research with women living
reduce HIV-related stigma and discrimination with HIV, transgender populations, and nonbinary
within communities more generally, even as pro- populations is only just beginning. Gay and other
moting such understanding often requires nuanced men who have sex with men appear to be the main
approaches. Millions of people living with HIV, as populations studied in published U=U research
well as those at risk of infection, have yet to receive to date.42 Additionally, the intersection of gender
the facts and potential implications of U=U for with race and other factors is evident, but not often
their lives and those of their sexual partners. Of studied, creating additional layers of complexity to
concern when messaging does take place, howev- be tackled moving forward.
er, are the differences that have been found in the Widespread power inequalities have long
perception of accuracy of U=U messaging across been known to delay women’s access to viral load
various subgroups, including people who are HIV testing, which is necessary for U=U to be effective.43
negative and gay and other men who have sex with Fear of intimate partner violence and economic
men, depending on the source of the information. dependency have also been found to deter women
This is based on trust in the source, as well as how from seeking treatment and care.44 Two studies
this intersects with such factors as socioeconomic completed in 2017 with important implications for
status, race and ethnicity, geographic location, drug U=U included interviews with women, their male
use, engagement in sex work, being on pre-expo- partners, and service providers in Kenya, South Af-
sure prophylaxis, and HIV status, highlighting the rica, and Zimbabwe. In both cases, they found that
need for accurate targeted messaging campaigns to providing HIV treatment to women was perceived
reach different groups.37 by some as approving increased sexual freedom for
The issues described above call for nuanced, women, a notion that is highly stigmatized, conse-
subgroup-specific health promotion messaging.38 quently leading to lower access and adherence to
The involvement of NGOs and community mem- treatment.45
bers in government-led health programs even at The exclusive focus of U=U messaging on
the community level is critical, so that targeted and sexual transmission of HIV, with little attention
trusted messaging can shape prevention responses to its implications for transmission from parent
and allow for public participation.39 Even within to child, constitutes another real limitation from
identified communities or population groups, none a gender perspective. In the absence of relevant
is monolithic or has uniform and predictable information, women of reproductive age have
behaviors, underscoring the need for any com- struggled to understand the implications of U=U
munity-level U=U messaging to be designed as an for the prevention of vertical transmission of HIV
entry point for individual-level discussion.40 if their viral load is undetectable, suggesting once
again that clearer messaging is required.46
Accountability Transgender and nonbinary people are well
Relatively little has been published about account- known to face great barriers in accessing ART,
ability in the context of U=U. One study was found including because of the lack of knowledge and sen-
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l. ferguson, w. jardell, and s. gruskin / general papers, 1-11
sitivity among health care providers exacerbated health systems, and community environments can
by stigma, discrimination, and legal impediments be strengthened to ensure that U=U works for all
more broadly. Issues of concern identified in one people. This is broader than the purely biomedi-
study include those associated with poor mental cal approach that is so often at the center of U=U
health, substance use, violence, lack of family efforts.
support, homelessness, and unemployment, all of The success of U=U is contingent on the envi-
which can compromise the ability to achieve a sup- ronment of structural and societal factors beyond
pressed viral load.47 the mere availability of ART, many of which are out
Tackling the gender stereotypes and dynam- of an individual’s explicit control. Increased focus
ics that disadvantage specific people is critical to on ensuring the availability and accessibility of
the success of U=U, and critical to addressing the functional mechanisms of accountability can help
structural, health system, and community- and promote attention to the range of structural issues
individual-level factors that influence the effective- identified above, drawing attention to who is re-
ness of these interventions. sponsible for taking action, where programming is
succeeding, and, importantly, where programming
is falling short and what steps are needed to ensure
Conclusion
that U=U achieves its potential for its intended
While much U=U research and many interventions beneficiaries. Far more attention is needed to the
have focused on the reductions in epidemiological differences among and within national and local
risk of HIV transmission during different types contexts, as programming will play out differently
of sexual intercourse, including condomless vagi- given the structural, cultural, legal, health system,
nal sex and condomless anal sex, far fewer efforts and gender dynamics that exist. Community par-
have been made to address the legal, rights-related, ticipation in accountability schemes is as key as it is
and gender-related factors that play key roles in to involvement in the planning and design of U=U
influencing people’s ability to reach and maintain interventions.
undetectable viral loads. As discussed above, exam- NGOs such as the International Community
ples of success in bringing in rights concerns and of Women Living with HIV, the International
understanding gender dynamics as they relate to Council of AIDS Service Organisations, and the
U=U exist but are limited. Most of the interventions Prevention Access Campaign have been extremely
found considered only one or two rights principles, vocal about many of these issues, but despite these
and none attempted to systematically address all efforts there remains a lack of explicit attention to
the legal, rights, and gender concerns noted above, gender dynamics and human rights considerations
even as each has, individually, been shown to bring in research and programming efforts concerned
benefits for U=U.48 Notably, the human rights with U=U. What does exist is limited largely to
principles of participation and accountability have the need to address human rights-related barriers
received very little explicit attention in documented regarding accessibility, affordability, and stigma
U=U efforts to date. and discrimination.49 This is necessary but not
This analysis has underscored how U=U in- sufficient.
terventions can incorporate efforts to understand The COVID-19 pandemic has highlighted
and address local gender norms and dynamics, as the inadequacies of health care systems around
well as benefit from explicit attention to the legal the world to tackle growing threats on top of their
environment and realization of the human rights current responsibilities. The last few years have
principles and standards outlined in Table 1. The seen increasing declines in funding and attention
findings from this work can provide signposts as to to HIV programming, justified by the perceived
ways in which, with systematic attention to rights urgency of addressing COVID-19, exacerbating
and gender, the legal and policy environment, preexisting reductions in HIV funding globally.50
The 2021 Political Declaration on HIV and AIDS Sexual and Reproductive Health for People Living with
calls for an end to the inequalities that persist with- HIV: An Overview of Key Human Rights, Policy and Health
Systems Issues,” Reproductive Health Matters 15/Suppl 29
in both the COVID-19 and the HIV pandemics and
(2007).
pushes for the world to prioritize the right to health 9. S. Gruskin, E. J. Mills, and D. Tarantola, “History,
for all without discrimination.51 This must be the Principles, and Practice of Health and Human Rights,” Lan-
approach taken to U=U in all respects, including cet 370/9585 (2007).
financially and programmatically. 10. UNAIDS, UNAIDS Gender Assessment Tool: Towards
U=U is an incredible scientific advance: it can a Gender-Transformative HIV Response (Geneva: UNAIDS,
2018).
have the most impact where it is boldly embraced,
11. Global Fund to Fight AIDS, Tuberculosis and Malar-
clearly articulated, and tailored to reach those who ia, “HIV and AIDS” (2020), https://www.theglobalfund.org/
need it most. A systematic approach to understand- en/hivaids/.
ing and addressing the legal, human rights, and 12. Ibid.; Global Fund to Fight AIDS, Tuberculosis and
gender-related factors noted here can bolster the Malaria, HIV, Human Rights and Gender Equality (Geneva:
effectiveness of U=U messaging and programming Global Fund, 2019); World Health Organization, Program-
matic Update: Antiretroviral Treatment as Prevention (TasP)
and can be utilized across geographical contexts.
of HIV and TB (Geneva: World Health Organization, 2012);
There is sufficient evidence of what is needed to Global Fund to Fight AIDS, Tuberculosis and Malaria, Step
ensure that as U=U rolls out across the world, it Up the Fight: Focus on Human Rights (2019), https://www.
creates benefits, and that these benefits accrue to all theglobalfund.org/media/8119/publication_humanrights_
populations, not just those who are easiest to reach. focuson_en.pdf; PEPFAR, Strategy for Accelerating HIV/
AIDS epidemic Control (2017–2020) (Washington, DC: US
Department of State, 2017).
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