Project Description

Moving towards the international AIDS conference in Washington, DC, in July 2012, this special ‘pre-conference’ edition of the ALQ/Mujeres Adelante on women’s rights and HIV portrays some of the realities, risks and needs of women and girls in various contexts and locations.

The various articles explore the extent to which progress has been made in ‘realising’ women’s rights in the context of and in the response to HIV, with a particular focus on accessing services and programmes; and highlight the many challenges women face when claiming their rights and accessing services. Some of the issues discussed include the need for ethical policy and programme development when addressing the intersection of violence against women and HIV; the opportunities and implications of the healthcare reform in the U.S. for women living with HIV; the effects of patriarchy and gender inequality on HIV testing and disclosure in South Africa; positive women’s experiences of accessing reproductive and maternal health services in six Asian countries; and the need for effective HIV responses to the realities and needs of key affected women and girls in Asia and the pacific. this edition also provides an overview of women’s realities versus rights in the context of women and HIV in Africa, and explores the ‘threats’ to achieving women’s health and rights in times of economic austerity.

June 2012
Special edition
incorporating
MujereS adelante ALQ
A Publication of the AIDS Legal Network
Mujeres Adelante A newsletter on women’s rights and HIV
Fiona Hale, MariJo Vazquez, Dinys Luciano
As understanding of the links between HIV
and violence against women grows, so too
does the ethical imperative for policies and
programmes which integrate both issues; addressing them
together, rather than in isolation. Key considerations
include how to ensure service delivery, treatment
and prevention, research, and programme and policy
development which integrate HIV and violence against
women, addressing the priorities of women and girls who
are living with HIV and/or experiencing gender-based
violence, upholding their human rights and challenging
gender inequalities.
These are some of the key questions which are explored
in the project Human rights, HIV and violence against women
in Central America: Integrated Responses, which takes place
in four countries in Central America, and which is led by the
Inter-American Commission of Women of the Organization
of American States. The document ‘Ethical considerations
for an integrated response to human rights, HIV and violence
against women in Central America’, produced as part of this
Beyond the recognition of human rights…
Violence against women and HIV: Ethical policy and programme development
All the women living with HIV in my organization have been subjected to various forms of violence before
and after diagnosis, from sexual violence, psychological, economic to institutional violence. The most
important lesson for us is that we are able to talk about this issue and from identification [of it], support
each other and make joint decisions to seek help and improve our quality of life. (Latin America)1
Mujeres Adelante 2 EDITORI AL
Special edition incorporating MujereS adelante – June 2012 ALQ
Moving towards the International AIDS Conference in
Washington, DC, in July 2012, this special ‘pre-conference’
edition of the ALQ/Mujeres Adelante on women’s rights
and HIV portrays some of the realities, risks and needs of women and
girls in various contexts and locations.
The various articles explore the extent to which progress has been
made in ‘realising’ women’s rights in the context of and in the response to
HIV, with a particular focus on accessing services and programmes; and
highlight the many challenges women face when claiming their rights
and accessing services. Some of the issues discussed include the need
for ethical policy and programme development when addressing the
intersection of violence against women and HIV; the opportunities and
implications of the healthcare reform in the U.S. for women living with
HIV; the effects of patriarchy and gender inequality on HIV testing and
disclosure in South Africa; positive women’s experiences of accessing
reproductive and maternal health services in six Asian countries;
and the need for effective HIV responses to the realities and needs of
key affected women and girls in Asia and the Pacific. This edition also
provides an overview of women’s realities versus rights in the context of
women and HIV in Africa, and explores the ‘threats’ to achieving women’s
health and rights in times of economic austerity.
In light of the growing understanding of the links between violence
against women and HIV, as well as more programming integrating both
issues, Fiona Hale, MariJo Vazques and Dinys Luciano discuss the
ethical imperatives and principles which are to be applied in policy and
programme design and implementation. The article explores the role
of ethics in relation to human rights and the law, as well as to violence
against women and HIV, and introduces ethics as the cornerstone of
participation. Based on the premise that even ‘well-intentioned’ policies
and programmes may ‘exacerbate the effects of violence and HIV’ and
expose women to greater risks, the article argues that we have to move
‘beyond the recognition of human rights’ and begin to ‘cross-fertilise’ ethics
Editorial…
Continued on page 4
1. Beyond the recognition
of human rights… Page 1
Violence against women and HIV: Ethical
policy and programme development
Fiona Hale, MariJo Vazquez, Dinys Luciano
2. Editorial Page 2
3. Speak Up! Page 11
Women changing the course
of the HIV epidemic
Naina Khanna, Brook Kelly
4. The common mindset… Page 20
Gender inequality and its effect
on HIV testing and disclosure
Sierra Mead
5. Positive and pregnant
…how dare you Page 28
Access to reproductive and maternal
healthcare for women living with HIV in Asia
Susan Paxton
6. Messages from around the world
Page 37
7. Critical ingredients for effective
HIV responses… Page 38
Women and girls in a concentrated
epidemic
Rodelyn Marte, Rose Koenders, Katy Pullen
8. Who decides…? Page 43
Achieving women’s health and rights in
times of economic austerity
Luisa Orza
9. Intersecting factors
must be addressed… Page 47
Sexual and reproductive health and rights,
HIV and the African Women’s Protocol
Karen Stefiszyn
10. Taking a stand
Page 56
In this issue
Mujeres Adelante 3
project, is among a small number of papers which specifically
address this issue.
A decade ago, international organisations working on HIV
and women’s human rights started sharing evidence of the strong
link between violence against women and HIV. A number of
international agreements – including
the Declaration of Commitment on
HIV/AIDS (UN, 2001) and the San
Salvador Declaration on Gender, HIV
and Violence Against Women (CIM/OAS,
2007) – acknowledged that eliminating
violence against women contributes to
reducing the spread of HIV. Awareness is
growing of the impact of violence against
women as something which intersects
with HIV throughout the life cycle2, and
that effective responses to violence must
include and be adapted to the different life cycles of women and
men. Whole-system and whole-society approaches are needed:
responses which see men simply as perpetrators of violence
against women miss the opportunity to tackle vital underlying
structural and cultural causes of violence against women living
with HIV, which we define as
…any act, structure or process in which
power is used in such a way as to
cause physical, sexual, psychological,
financial or legal harm to women living
with HIV3.
With the global rise in HIV prevalence
among women, and growing awareness of
the scale of violence against women, there
is increasing support for the idea that ethical
policies and programmes on HIV and on
violence against women must grapple with
ALQ June 2012 – Special edition incorporating MujereS adelante
Beyond the recognition of human rights…
I am 17. I have a 3 month old baby. I acquired HIV/AIDS from my mother. She had the virus because she was raped by her
step-father. He raped her, my aunts, and he had sexual relations with my grandmother, his wife. They all got HIV. My mum could
leave, so she did. She left home and got together with my dad when she was 13 or 14. She passed the virus on to my dad without
knowing it… My little sister is 14 and luckily her health is good, like mine is, but her situation is different to mine – she does not
have the virus. … My mum died when she was 19 and I was 3, and my dad died at 33 when I was 12… When my mum and
dad had both died, I went to live with my grandmother. At first she treated us well, but as my body started to develop when I was
10, my step-grandfather raped me and my sister. We told my grandmother, but she didn’t want to listen. I did not really have a
childhood or adolescence. Morena, 19, Panamá 4
…responses which see
men simply as perpetrators
of violence against women
miss the opportunity to
tackle vital underlying
structural and cultural
causes of violence against
women living with HIV…
Mujeres Adelante 4 EDITORI AL
Special edition incorporating MujereS adelante – June 2012 ALQ
and human rights approaches, so as
to ensure the meaningful involvement
of those at the intersection of violence
against women and HIV.
The healthcare reform, and its
opportunities and implications for
women living with HIV in the
U.S., is the focus of the article by
Naina Khanna and Brook Kelly.
Recognising the potential of healthcare
reform to address and reduce ‘health
disparities’ experienced by women
living with HIV, the article discusses
a number of reasons as to why the
full implementation of healthcare
reform is ‘vital’ to ensure that the
realities and needs of women living
with and vulnerable to HI V are more
adequately catered for by the healthcare
system. The authors emphasise the
importance of ‘collective advocacy’ and
argue that the meaningful involvement
of women living with HI V in all
aspects of decision-making; ending HIV
criminalisation; and securing sexual and
reproductive justice, economic justice,
prevention justice, and women-centred
care, are most critical aspects in ‘changing
the course of the HIV epidemic’.
Gender inequality and its effects
on HIV testing and disclosure in the
South African context are discussed by
Sierra Mead. The article, placing
patriarchy at the centre, explores the
various correlations between male
dominance and HIV, and highlights
violence and/or the fear violence as
a common denominator for women’s
experiences of HIV testing and
subsequent disclosure of a positive
HIV status. Underscoring the
‘disempowering’ effects of the ‘powerful
social attitude’ that embraces gender
inequalities, and the need for HIV testing
services to ‘begin to anticipate and
address’ possible adverse consequences
for women accessing these services,
she argues that without changing the
‘common mindset’, women will continue
to ‘avoid’ HIV testing, as the ‘benefits’
of knowing one’s status outweigh the
possible ‘risks and consequences’.
The scale-up of HIV testing during
pregnancy is often associated with
stigma, discrimination and other
rights violations against women
living with HIV within service
provision. It is within this context that
Susan Paxton explores positive
women’s experiences of accessing
reproductive and maternal health
services in Asia, and introduces key
findings and recommendations from a
study in six countries. Analysing women’s
experiences in accessing a wide range
of services, including pre- and post-test
counselling, access to antiretrovirals
and contraception, pregnancy-related
healthcare and delivery, infant
healthcare, as well as termination of
pregnancy and sterilisation procedures,
the findings clearly indicate ‘extreme
levels’ of discrimination and other
rights violations, degrading treatment
by health providers, coercive
practices, especially in the context of
abortion and sterilisation, and lack of
information and support for women
living with HIV. The article concludes
with recommendations, including
the need to uphold, protect and
advance positive women’s rights, while
ensuring an end to coercive and
discriminatory practices in reproductive
and maternal healthcare.
Focusing on key affected women
and girls in concentrated epidemics,
Rodelyn Marte, Rose Koenders and
Katy Pullen explore ‘critical ingredients
for effective HIV responses’ in Asia and
the Pacific. Highlighting that the needs
and rights of women and girls most at
risk of, and vulnerable to HIV, continue
Mujeres Adelante 5
ALQ June 2012 – Special edition incorporating MujereS adelante
women’s empowerment
and rights, equality,
and gender equity,
as well as the role
of power dynamics
in any initiative to
address the structural
factors common to
both violence against
women and HIV.
Violence against women and HIV have both a huge
impact on women’s access to work, health, justice, education
and services in general. In any sector, the policies and
programmes which do not take into account the needs of
women may exacerbate the effects of violence and HIV5.
Even when policies and programmes are well-intentioned,
they may expose women to greater levels of violence, and/or
pose problems for HIV prevention, care, treatment and support
for women.
By providing a guide to ethical thinking, multisectoral
partnerships will be able to find common ground for ethical
decision-making built on the meaningful involvement of
those at the intersections of violence against women and
HIV – particularly women living with HIV and women with
experience of violence.
Below we briefly address the following questions:
• What do we understand by ethics?
• How does ethics relate to human rights, and the law?
• What is the place of ethics in relation to violence against
women and HIV?
• Participation and ethics
What do we understand by ethics ?
Ethics is a set of principles used to reflect on the intentions
and consequences of situations and actions aiming to
protect individuals and communities, while exploring risks
and benefits for them. These principles include concepts
such as respect for autonomy of the person, beneficence,
non-maleficence and justice, as well as principles such as
gender equality, accountability, respect for human rights,
women’s empowerment and participation.
Ethical behaviour requires us to link key principles with
the particular circumstances in which we find ourselves
in our professional, person and social relationships. It is
about bringing these
principles to life
through our individual
actions, and making
them permeate in
everything we do in our
personal, professional
and social lives.
Beyond the recognition of human rights…
…applying ethics in our
lives requires us to develop
attitudes and behaviours
which take into account the
possible consequences of
our actions…
…ethical behaviour
requires us to link
key principles with
the particular
circumstances
in which we
find ourselves…
6 Mujeres Adelante Special edition incorporating MujereS adelante – June 2012 ALQ
EDITORI AL
to be ‘side-lined’, the article underscores
the need for more evidence-based
research, building strategic partnerships
and alliances, mobilising support,
and policy advocacy so as to ensure
effective responses to women and
girls in concentrated epidemics. The
authors share their experiences, as
well as challenges, and argue that in
order to achieve ‘commitments and
targets’ it is crucial to ‘counter the
invisibilisation’ of women and girls, to
recognise their specific realities and
needs, and to ensure that these are
‘accurately’ addressed.
Recognising the fact that despite
political commitment, women and girls
continue to face serious rights violations
in the context of access to healthcare,
Luisa Orza raises the question as to ‘who
decides’ the extent to which women’s
health and rights are achievable in
times of economic austerity. The article
discusses the ‘investment paradigm’
and ‘chronic underfunding’ for women
and girls, and highlights the need to
expand the agenda, to reclaim the
multiple dimensions of rights, and to
demand accountability. Drawing from
various women-led conversations
and consultations, she argues that it
is time to ‘urgently’ realise the political
commitments around women’s and girls’
right to health, and to translate women’s
rights from the ‘imaginary’ to the ‘real’,
as otherwise the lived complexities
of women’s rights and challenges of
claiming rights will continue to go
‘misunderstood and unacknowledged’.
The violation of positive women’s
sexual and reproductive health and
rights in the context of HIV in Africa are
explored by Karen Stefiszyn. Based on
the premise that the violation of these
rights are cross-cutting and inhibit the
enjoyment of other rights, the article
introduces positive women’s lived
realities versus the rights guaranteed
in the African Women’s Protocol in
the context of pregnancy, the right to
control fertility, family planning and
access to contraceptive services, access
to legal abortion, as well as forced or
coerced sterilisation. Exhibiting the
huge gaps between rights and realities,
she argues that effective responses to
women and HIV in Africa have to be
based on enabling environments for
women to exercise their rights, and
need to address ‘intersecting factors’,
such as gender inequality and gender
violence, increasing women’s risks
and vulnerabilities to HI V and related
rights abuses.
The various realities portrayed in the
articles, although diverse in their contexts
and locations, seem to all underscore the
persistence of human rights abuses and
violations based on and in the context of
HIV, as well as the apparent ‘inability’ to
translate the commitments to promote
and protect human rights in the response
to women and HIV into ‘lived experiences
and realities’ of women and girls.
Similarly, despite the variety of women’s
realities presented in these articles, the
common ‘picture’ seems to be that without
addressing and transforming societal
contexts and environments creating
and manifesting women’s greater risks
and vulnerabilities to HI V and related
rights abuses, women across the
globe will continue to be the ‘target’ of
stigma, discrimination, violence and
other rights violations, despite the
many commitments and declarations
to protect and advance women’s
rights in the context of, and in the
response to, HIV. Given these seemingly
never-changing realities for women
and girls, it is indeed high time for
Turning the Tide!
Johanna Kehler
Mujeres Adelante 7
ALQ June 2012 – Special edition incorporating MujereS adelante
Beyond the recognition of human rights…
Applying ethics in our lives
requires us to develop attitudes and
behaviours which take into account
the possible consequences of our
actions. It means taking responsibility
for whatever we do. It is important to
note that ethics is not static; it is a
process, needing constant assessment
to ensure our decisions are keeping
up with the changing context, and
therefore the consequences, of our actions.
Ethical decision-making is not straightforward. It requires
accepting complexity; debate and dialogue with those affected;
and understanding of different viewpoints. Ethical decisionmaking
is particularly dependent on personal, organisational
and institutional commitment.
How does ethics relate to human rights ?
And the law ?
Ethical principles provide standards used both to understand
the dynamic of problems and to respond to them. Ethics and
human rights are complementary fields, since both focus on
human well-being and justice. Ethics engages us in a critical
thinking process, while the laws and human rights provide a
legal grounding of institutions and individuals in relation to
their responsibilities.
In many countries laws are grounded
neither in sound ethical values, such as justice,
respect for people and beneficence, nor in
human rights principles of non-discrimination,
participation and accountability. The law should
be inextricably linked to ethics, to a moral (but
not moralistic) understanding of the world and
the relationships between people. In this way,
laws, human rights, and our responsibilities as
human beings must be intimately linked, so that
rights are protected by laws which are accepted and acceptable,
and not just coercive. There is an urgent need to cross-fertilise
ethics and human rights approaches, and to explore how they
can be applied in conjunction to the theory and practice of
policies, programmes and research.
Including ethical reflection in our work and in our
private lives introduces the concept of responsibility for our
actions at individual, institutional and community levels.
This responsibility is what ensures that human rights are
not only recognised
as inherent to our
human condition,
but also respected
and defended. In this
same sense, ethical
reflection also
…ethical decision-making
is not straightforward.
It requires accepting
complexity; debate and
dialogue with those
affected; and understanding
of different viewpoints…
…ethics and human rights
are complementary fields,
since both focus on human
well-being and justice…
Mujeres Adelante 8 Beyond the recognition of human rights…
Special edition incorporating MujereS adelante – June 2012 ALQ
allows us to create
better laws, which
enable practical
interpretations of
a series of agreed
principles.
Ethics goes
beyond the recognition of human rights, and imposes a moral
obligation to defend them and to take the consequences if they
are not taken into account, including not just the human rights
of individuals, but the principle of social justice, which is by
its nature relational and takes account of the community and
society in which people live.
What is the role of ethics in relati on to
violence against women and HIV?
Ethics and human rights frameworks are key to the
development of integrated responses to HIV and violence
against women:
• There is a great need to determine an appropriate course
of action to ensure ethical principles, such as social
responsibility, justice, respect for persons (privacy,
confidentiality, informed consent), beneficence and
non-maleficence, are applied6.
• Ethics provides guidance for analysing why and how
structural and social determinants must be placed at
the centre of the integration process. Growing gender
and other social inequalities and inequities are driving
forces behind HIV and violence against women as
two human development and rights problems. Gender
discrimination, social exclusion, poverty, and power
relations in all levels of society, including between rich
and poor countries, play an important role in the ways
both problems intersect, as well as their consequences for
women. Critical ethics analysis helps conceive of HIV
and violence against women as the result of behaviours,
but also as resulting from policies, institutional
responses, prevailing structures of cultural attitudes and
social power.
• Ethical considerations regarding meaningful participation
of those most affected by HIV and violence against
women are an important concern for integration of HIV
and violence against women policies and programmes.
• Ethics and human rights frameworks must be used to
ensure that HIV and violence against women services,
research and prevention interventions are implemented,
guaranteeing access to treatment, care and support of
those in need7.
• In the case of violence against women, it is vitally
important to work from an ethical perspective, given the
extreme sensitivity of the issue, the fact that interventions
take place in complex situations, and there is a risk of
…so that rights are
protected by laws which are
accepted and acceptable,
and not just coercive…
Mujeres Adelante 9
ALQ June 2012 – Special edition incorporating MujereS adelante
contributing to prolonging or
increasing the effect of violence
experienced by women. Taking
an ethical perspective in these
circumstances is not only one
option, but an obligation which
makes the difference in situations
in which basic ethical principles
are compromised in relation to
the well-being of people: liberty,
autonomy, social justice.
Participati on as a cornerstone of ethics
The participation of women living with HIV, and of
communities, is crucial to advancing collective responses
to the challenges of HIV and violence against women9. The
ethical principle of respect for autonomy underlies the principle
of participation: involving women living with HIV or those
who have experienced violence in policy and programming
decision-making respects them as human
beings and agents of change.
If participation is to ensure that the
principle of beneficence is reflected in
decision-making, it must be explicitly
supported. Women living with HIV have too
often been invited to attend policy meetings
at short notice and without sufficient time
to prepare. There is also a tendency for
policy makers to invite the participation
of individual women, rather than inviting
women’s groups to send a representative. Papers for meetings
may be sent by email rather than in hard copy, putting the onus
on the women participants to organise and pay for printing
of what can often be lengthy documents. There are rarely
opportunities for women participants to learn about or observe
the meeting culture before taking part, making it difficult to
play a full role, and to adapt to the particular way of working of
any given meeting or group. Women participants may find they
are a lone voice in the meeting, or may feel they are expected
to be ‘representative’ – whether they are or not. Financial
resources to cover the costs of participating are not always
made available, or are reimbursed after the event, placing an
additional burden on women10.
Women living with HIV and women who experience
violence must be at the centre of the response. Women who use
…ethical reflection also
allows us to create better
laws, which enable
practical interpretations
of a series of agreed
principles…
Beyond the recognition of human rights…
We have worked tirelessly to get our views onto the
agenda and represented in decision-making arenas of all
types of institutions. However, external agencies often
fail to realise the burden on individuals of being asked
to speak without adequate support. This can result in
exhaustion and difficulties in balancing family and work
responsibilities and complicated treatment regimes.8
10Beyond the recognition of human rights…
Special edition incorporating MujereS adelante – June 2012 ALQ
drugs and women sex workers have important insights into the
intersections between violence and HIV, and the most effective
ways to address these, as do women migrants, indigenous
women, women who are deprived of liberty and others who are
particularly affected by the social and structural determinants
of HIV and violence against women. Their perspectives,
contributions and comments must be sought out in line with
ethical principles.
However, simply allowing women’s participation does
not address the issues of poverty, socio-economic status or
vulnerability. An ethical approach requires not only that
women’s participation is permitted, but also that they are
provided with the support needed to participate effectively.
To this end, it is important that women’s organisations are
adequately funded and supported.
FOOTNOTE:
1. Athena Network & the Global Coalition on Women and AIDS. 2011.
In Women’s Words: Action Agenda. 2011 High Level Meeting on
AIDS and Beyond: HIV Priorities for Positive Change, p4. [www.
womeneurope.net/resources/InWomen%27sWordsFinal.pdf]
2. Picasso, N. 2008a. ‘Interpreting VAW from the Experiences of Women
Living with HIV/AIDS’. In Connections, D. (ed.) The Multiple
Faces of the Intersections between HIV and Violence Against Women.
Washington DC: Development Connections (DVCN), pp22-27;
Picasso, N. 2008b. ‘Reinterpreting violence from the perspective of
women living with HIV’. In: Luciano Ferdinand, D. (ed.) A Manual for
Integrating the Programmes and Services of HIV and Violence Against
Women. Washington DC: Development Connections, UNIFEM, p13.
3. Hale, F. & Vazquez, M.J. 2011. Violence Against Women Living
with HIV/AIDS: A Background Paper. Development Connections,
International Community of Women living with HIV/AIDS (ICW
Global) and UN Women, p13.
4. ICW Latina. 2007. Y ni siquiera llore: Testimonies of Latin American
Children and Adolescents Living with HIV/AIDS, Buenos Aires:
ICW Latina, pp69-70. [www.icwlatina.org/imagenes/biblioteca/
ynisiquierallore.pdf]
5. Hale, F. & Vazquez, M.J. 2011. Violence Against Women Living
with HIV/AIDS: A Background Paper. Development Connections,
International Community of Women living with HIV/AIDS (ICW
Global) and
UN Women.
6. WHO. 2009. Research ethics committees. Basic concepts for capacity
building. Geneva; Grundfest, B. 1991. ‘Ethical, methodological and
political issues of AIDS research in Central Africa’. In: Social Science
& Medicine, Vol. 33, No.7, pp749-763.
7. WHO. 2009. Research ethics committees. Basic concepts for capacity
building. Geneva; Piot, P. 2010. ‘Setting new standards for targeted
HIV prevention: The Avahan initiative in India’. In: Sexual Transmitted
Infections, February 2010, Vol 86, No 1, Suppl 1.
8. Manchester 2004, cited in ICW. 2004. Participation and Policy-
Making – Our Rights.
9. UNIFEM & Athena Network. 2008. The Power of Participation:
Women Leaders Speak. [www.unifem.org/materials/item_detail.
php?ProductID=128]
11. ICW. 2004. Participation and Policy-Making – Our Rights.
12. Gatsi Mallet, J. & Orza, L. 2007. ‘Thinking positive’. In: Open
Democracy, 30 November 2007. [www.opendemocracy.net/
article/5050/16_days/hiv_aids_namibia]
Mujeres Adelante Fiona Hale is a freelance consultant and
Salamander Trust Associate, MariJo Vazquez is a
former chair of ICW and a founding member of the
Athena Network, and Dinys Luciano is the director of
Development Connections working for
social justice and equity.
For more information and/or comments,
please contact Fiona at fionaatlarge@yahoo.com.
When it occurs, ‘participation’ is offered like a treat,
a bonus or a meal ticket – an all-expenses paid trip
to New York, what more could a (poor, uneducated,
marginalised, HIV-infected, female) person ask for?
Rarely, if ever, do those creating the policy, holding the
meeting, developing the programme, ask: what are your
priorities? Where do you think we should start? What
are the biggest challenges facing you at home? What do
you think this is all about? 11
Mujeres Adelante
Naina Khanna, Brook Kelly
Yet, we know that without forceful advocacy by
and for women living with HIV some of these
advances may not live-up to their promise. With
that in mind, the Positive Women’s Network has focused
on a few key areas for advocacy: the intersection of HIV
care and prevention, sexual and reproductive healthcare and
gender-based violence; women-controlled prevention tools; and
how the implementation of the Affordable Care Act will create
opportunities for these.
Current data confirms what so many women living with
and affected by HIV know from experience – race, gender,
geography and other structural and social variables impact
health access, quality of care, and health outcomes for women
living with HIV.
…poverty, intimate partner violence and food insecurity
are increasingly recognized as factors significantly
associated with increased high-risk sexual behaviors,
decreased initiation and retention in care, and worse
clinical outcomes.4
Related to these structural factors are societal realities
that impact whether or not women living with HIV will seek
and attain the care and treatment they need. For example, the
establishment of trusting and respectful doctor-patient, and
other HIV service provider relationships, and the creation
of laws and policies that intentionally or unintentionally
discriminate against and negatively impact people living with
HIV, can contribute to health outcomes and create barriers for
women seeking HIV care and treatment.
President Obama’s National HIV/AIDS Strategy (NHAS),
released in July 2010, includes three priorities: 1) reducing the
number of persons who become infected with HIV annually, 2)
increasing access to care and optimising health outcomes for
people living with HIV, and 3) reducing HIV-related health
disparities.5 Unfortunately, while the NHAS points to the crisis
epidemic among women, especially Black and Latina women
11
ALQ June 2012 – Special edition incorporating MujereS adelante
Women changing the course of the HIV epidemic
Speak Up!
Women changing the course of the HIV epidemic
With members across the country, the U.S. Positive Women’s Network has its finger on the pulse of
what matters to women living with HIV in the U.S. The past two years, since the last International
AIDS Conference, have brought tremendous potential for positive change for U.S. women – the
creation of the first U.S. National HIV/AIDS Strategy1 and the passage of the Patient Protection and
Affordable Care Act2 to name two – especially in the areas we believe are most critical to securing
HIV positive women’s rights: meaningful involvement of women living with HIV in all aspects of
decision-making; ending HIV criminalisation; and securing sexual and reproductive justice,
economic justice, prevention justice, and women-centred care.3
Mujeres Adelante 12Women changing the course of the HIV epidemic
Special edition incorporating MujereS adelante – June 2012 ALQ
in the U.S., the NHAS implementation and operational plans
have no specific goals or targets tied to reducing incidence
among women, improving access to, or quality of, care for
women, or improving the health outcomes of women living
with HIV.6 In addition, issues that disproportionately impact
women, including the need to integrate sexual and reproductive
healthcare into HIV care settings, and intimate partner violence
receive no attention whatsoever in the National HIV/AIDS
Strategy, which, advocates say, is a serious missed opportunity
to improve services for women.7
While President
Obama’s FY 2013
budget is relatively
good in terms of
domestic HIV
funding overall, the
only programme the
President targeted
for cuts in our HIV
safety net – The Ryan White Program – was Ryan White Part D,
which is specifically designed to afford ongoing care for women
and youth affected by HIV.8
Reducing health disparities experienced by women living
with HIV requires a close look at gender inequality and
the ways in which women’s experiences are accounted for
in HIV prevention programmes and healthcare systems. A
recent editorial in the Journal of Infectious Diseases stated
that ‘[i]dentifying which factors are the most significant
barriers to participation in care and designing appropriate
interventions are necessary to make any headway in erasing the
disparities that are evident in’9 health outcomes for women
living with HIV.
Sexual and reproductive health and rights
and gender-based violence
The U.S. Positive Women’s Network conducted a survey
of over 100 U.S. women living with HIV from February 2010
to January 2011. In the survey, women were asked about their
HIV testing experiences, provider attitudes and knowledge
about their sexual health and reproductive choices as women
living with HIV, and the effects of criminal HIV exposure and
transmission laws on their personal decision-making, and on the
HIV epidemic overall. An analysis of results from the survey
documented in Diagnosis, Sexuality, Choice,10 revealed that the
following rights of women living with HIV in the United States
are routinely violated.
The right to sexual and reproductive health and
reproductive choice
HIV specialists and general practitioners are not adequately
informed about HIV positive women’s reproductive rights and
options, thereby limiting the full range of reproductive choices
and options for women living with HIV.
…a close look at gender
inequality and the ways in
which women’s experiences
are accounted for in
HIV prevention programmes
and healthcare systems…
Mujeres Adelante 13
ALQ June 2012 – Special edition incorporating MujereS adelante
Women changing the course of the HIV epidemic
The right to be free from harmful HIV-related stigma
HIV-related stigma and lack of provider professionalism,
such as inadequate confidentiality policies, or discriminatory
treatment, impacts women’s decision-making when it comes to
accessing care or making decisions related to their reproductive
health and choices.
The right to accessible and high quality healthcare
Women often do not know they are at risk of HIV or
are not encouraged to get tested for HIV. When receiving
HIV positive test results from doctors, women have experienced
a range of negative
experiences sometimes
resulting from the
doctor’s general lack
of knowledge about
HIV and/or lack of
knowledge about
referral resources.
Lack of information on the part of providers may result in
late testing, poor health outcomes, and an inability to provide
life-saving referrals to women-centred supportive services.
The consequences of criminalising HIV positive
people’s sexuality
The majority of the respondents felt that laws criminalising
HIV transmission and exposure are not an effective HIV prevention
strategy. If anything,
many of the
respondents cited
the harm that
could result from
such laws. Laws
that criminalise
HIV exposure and transmission can be used as tools of abuse,
increase the already pervasive stigma faced by women living
with HIV, and may contribute to discrimination, as well as
hinder testing, disclosure and treatment adherence campaigns.
At a recent meeting of the Presidential Advisory Council
on HIV/AIDS (PACHA), national leaders in HIV prevention,
care and research spoke eloquently about the HIV crisis among
women in the United States, the need to better integrate sexual
and reproductive health services with HIV services, and the
need to address child sexual abuse and violence against women
as key aspects of our national HIV response.11
Every single expert – researchers, medical doctors,
psychiatrists, trauma experts, women living with HIV, and
community-based advocates from entities as diverse as the
National Institute for Health (NIH) and Sisterlove, Inc., a
women-led community based organisation in Atlanta – keyed in
on the relationship between HIV and violence against women as
a factor that increases women’s vulnerability to acquiring HIV,
and that makes women likely to suffer poor health outcomes
once diagnosed with HIV.12
…invest in women-centred
approaches that can help
provide for better sexual
and reproductive health
outcomes…
…rights of women living
with HIV in the United States
are routinely violated…
Mujeres Adelante 14Women changing the course of the HIV epidemic
Special edition incorporating MujereS adelante – June 2012 ALQ
Dr. Laurie Dill,
Medical Director
of Medical AIDS
Outreach of Alabama,
shared a story from
her clinical practice
of trying to conduct a
research study comparing the health outcomes of HIV positive
women who had experienced violence (the study group) with
HIV positive women who had not (the control group). She
could not recruit enough women to form a control group. That
is, Dr. Dill was unable to find enough women living with HIV
who had not suffered violence in their lives to undertake a
scientifically legitimate comparative study.
Although every expert at this national meeting from
Alabama to Chicago to Atlanta to Washington, DC, identified
addressing violence against women as a major component of
the HIV response, the National HIV/AIDS Strategy completely
failed to articulate the relationship between HIV and violence
for women. Similarly,
the Strategy failed to
identify securing sexual
health and reproductive
rights as pivotal to
addressing the HIV
epidemic. Additionally,
the Strategy did not
articulate a single
goal to explicitly reduce new infections among women or
to increase HIV positive women’s access to quality care (e.g.
by ensuring integration of sexual and reproductive healthcare
services in HIV care settings). These continued oversights
by our government continue despite new data from the HIV
Prevention Trial Network’s ISIS study that showed rates of HIV
incidence among Black women in some geographic hotspots
are five times higher than the estimated national average.
U.S. healthcare reform and women
living with HIV
In 2010, the Patient Protection and Affordable Care Act
(ACA) was passed by our legislatures – the first bill to attempt to
reform the U.S. health care system.13 The bill was immediately
challenged by states wishing to overturn key provisions of
the legislation. The legal battle reached the U.S. Supreme
Court and in January 2012, Women Organized to Respond to
Life-threatening Diseases (WORLD) and 16 other organisations
led by Lambda Legal filed with the Supreme Court a
friend-of-the-court brief in support of the Affordable Care Act
(ACA).14 The Supreme Court began hearing oral arguments in
March 2012 and a decision is expected to be reached by June. In
the meantime, the U.S., and women in particular who shoulder
the greatest burden of our country’s healthcare disparities, are
waiting to see how the Court will decide the fate of the ACA.
We know that the HIV epidemic thrives on a lack of quality,
acceptable, affordable and accessible healthcare.15 We also
know that discrimination in healthcare based on race, ethnicity,
…laws may contribute to
discrimination, as well as
hinder testing, disclosure
and treatment adherence
campaigns…
…thereby limiting the
full range of reproductive
choices and options for
women living with HIV…
Mujeres Adelante 15
ALQ June 2012 – Special edition incorporating MujereS adelante
gender and gender identity, pre-existing conditions, and
economic status is rampant.16 No one law can solve all of these
problems, in fact the ACA, if upheld, will not extend to recent
or undocumented immigrants in the U.S. But the Affordable
Care Act is a first and necessary step toward reforming our
healthcare system to better meet the needs of all people, and in
particular women living with HIV, because it has the potential
to address many of the failures of our current system to
integrate the key healthcare needs of women, as well as provide
non-discriminatory, consistent and more affordable quality care.
The full implementation of healthcare reform is vital
to women living with and affected by HIV for a number
of reasons:
1. Healthcare reform will increase access to health insurance
by expanding the Medicaid programme to all people who
live below 133% of the federal poverty level (FPL) period –
disability status will no longer be required17
This will have a hugely positive impact on the health of all
people living with HIV, since currently 29% of HIV positive
people have no health insurance whatsoever often because they
have not become sick enough to be considered disabled for the
purposes of Medicaid eligibility.18
Removing the cruel disability requirement from Medicaid
eligibility for those living below 133% of the FPL is especially
important for HIV positive women. Women living with
HIV, 76% of whom have children under 18 living in their
households, as well as other caretaking responsibilities, cannot
afford for their health to deteriorate in order to qualify for
healthcare.19 Nor should they have to. Removing these barriers
and expanding the Medicaid programme is key to reducing
the health disparities experienced by so many women living
with HIV.
2. Healthcare reform will bring down healthcare costs for
women living with HIV. One in two women report delaying
healthcare visits due to costs20
For a woman living with HIV, delaying vital healthcare
needs, due to lack of funds and paying out of her pocket
for care, can potentially have a devastating impact on her
well-being and her
financial security.21
Healthcare reform
will bring down
healthcare costs for
women by requiring
insurance companies, as well as Medicaid, to cap out-of-pocket
expenses, and ban insurance companies from dropping women
from coverage when they get sick.
3. Healthcare reform will prohibit health insurance
discrimination against women and against people with
pre-existing conditions, including HIV22
Currently, women face shocking levels of discrimination
in healthcare coverage. A 22-year-old woman can be charged
Women changing the course of the HIV epidemic
…that makes women
likely to suffer poor health
outcomes once diagnosed
with HIV…
Mujeres Adelante 16Women changing the course of the HIV epidemic
Special edition incorporating MujereS adelante – June 2012 ALQ
insurance premiums
150% times higher
than a 22-year-old
man with a similar
health history.23
Pregnancy and history
of previous pregnancy
are considered pre-existing medical conditions, as is a history
of intimate partner violence.24 Under the current practice,
women living with HIV can be denied health insurance solely
as a result of their HIV status, forcing many to cobble together
healthcare coverage from different sources such as ADAP,
Medicaid, and Medicare. Navigating these programmes can
be time-consuming and difficult. Taking care of one’s health
should not be a full time job! Getting medications covered
requires women to live below a certain income level – in many
cases, well under the poverty line.
The Act already prohibits discrimination against children
for pre-existing conditions and in 2014 will prohibit sex
and health status discrimination against all people.25 These
protections will be a long overdue fulfilment of HIV positive
women’s human rights.
4. Healthcare reform will provide greater
healthcare security
Less than 50% of women have the option of obtaining health
insurance through a job and when jobs change, health coverage
is often lost or
broken.26 Studies have
shown the importance
of building trusting
and long-lasting
relationships with HIV
medical providers.
Women cannot
afford to take breaks
from medications,
as a result of a
lack of coverage or
unaffordable co-pays. Reliable, continuous health coverage
with a trusted provider is essential for women living with HIV.
Spotty insurance coverage makes this impossible.
Through the creation of state-based health insurance
exchanges, the ACA will ensure that more women have
dependable and continuous uninterrupted coverage
for themselves and their families regardless of their
employment status.
5. Healthcare reform will create a health care system that
better meets women’s unique needs
Currently, women are at the mercy of their health insurance
provider for many essential and life-saving prevention services.
With the implementation of the ACA, several basic and
necessary services will be offered and covered by all healthcare
…the HIV epidemic
thrives on a lack of quality,
acceptable, affordable and
accessible healthcare…
…the potential to address
many of the failures of our
current system to integrate
the key healthcare needs
of women, as well as
provide non-discriminatory,
consistent and more
affordable quality care…
Mujeres Adelante 17
ALQ June 2012 – Special edition incorporating MujereS adelante
plans for free.27 Some of these critical services include Well
Women Visits that cover prenatal and postnatal counselling and
care; HIV and STI testing and counselling; human papilloma
virus testing; breastfeeding support, supplies, and counselling;
and screening and counselling for domestic violence. That
means these services will be offered to all women without
being charged for co-pays and/or deductables!
The provision of these prevention services, free of cost,
means a phenomenal healthcare win for all women, especially
women living with HIV. As we know, gender-based violence
contributes to
women’s vulnerability
to HIV and hampers
the wellness of
women living with
HIV. The fact that
the ACA recognises
the far-reaching
nature of violence in women’s lives by insisting that intimate
partner violence screening and counselling be a free service is
an extremely important step in coming to terms with what our
Attorney General Eric Holder admits as a ‘staggering’ amount
of intimate partner violence experienced by women.
Moreover, these prevention services for women can begin to
address some of the discrimination women living with HIV face
in exercising their reproductive options.28 Women living with
HIV are often not offered sexual and reproductive healthcare
services, such as prenatal counselling, STI testing, or human
papilloma virus (HPV) testing, because doctors assume that
people’s sex lives end with an HIV positive diagnosis. We know
this is not true. Many women living with HIV have happy and
healthy sex lives, and need these types of reproductive health
services as much, if not more, than other women in order to
stay healthy.
The Affordable Care Act is a unique opportunity to
reform our healthcare delivery system. It lowers costs for
insurance, prohibits gender and health status discrimination,
provides continuous healthcare coverage, and prioritises
women by fully covering our key healthcare needs. It would
be a national tragedy if the Supreme Court finds the bill to be
unconstitutional because it requires all people to be insured.
Expanding coverage to everyone should be our national goal,
not our fear.
The importance of collective adv ocac y – The
establishment of a White House Working
Group on the Intersecti on of HIV/AIDS, Violence
Against Women and Girls, and Gender-related
Health Disparities
In response to opportunities to improve the lives of women
through the implementation of new U.S. policies, like the
Affordable Care Act or National HIV/AIDS Strategy, and the
propensity for women, especially women living with HIV, to
be left out of the decision-making process, or included as an
Women changing the course of the HIV epidemic
…key to reducing the
health disparities
experienced by so many
women living with HIV…
Mujeres Adelante 18Women changing the course of the HIV epidemic
Special edition incorporating MujereS adelante – June 2012 ALQ
afterthought, the PWN helped to found the 30 for 30 Campaign
in April 2011. The 30 for 30 Campaign serves as a coordinating
body of HIV and reproductive health organisations from
every region of the country working to ensure that the unique
needs of women, including transgender women, with regard to
HIV prevention, care and treatment are addressed in all relevant
funding, programmes and policies. The Campaign is especially
committed to alleviating HIV-related health disparities for
women of colour who currently make up more than 80% of
HIV cases among women in the United States.
The Campaign has had unprecedented success in
moving a women’s agenda in the HIV response, due to the
diversity and commitment of coalition partners. With the
three priority areas, the Positive Women’s Network, and other
member organisations, have been able to leverage collective
energy to make waves in U.S. AIDS policy to 1) expand and
expedite the provision of facilitative support services and
housing services for women living with and affected by HIV;
2) make women-centred, integrated care more widely
and readily available by
integrating the provision
of the three healthcare
delivery areas of greatest
importance to women:
(a) HIV prevention,
treatment and care;
(b) sexual and
reproductive health
services; and (c)
intimate partner
violence prevention
and counselling; and 3)
produce better data and
more targeted research
to identify and address
women’s needs. All data
must be disaggregated
by sex and gender.
Wome n – c o n t r o l l e d
prevention tools must
be developed and made available.
A recent and major accomplishment of our collective
pressure has been President Obama’s establishment of
the White House Working Group on the Intersection of
HIV/AIDS, Violence Against Women and Girls, and
Gender-related Health Disparities.29 The intersectional
Working Group differs significantly from the siloed approach
to women’s health that the U.S. has historically taken. The
Working Group has a broad charge and incorporates a
human rights-based affirmative approach to addressing the
HIV epidemic for women, including coordination of U.S.
agency efforts, to 1) raise governmental and public awareness
about the need to address the intersections of HIV, violence,
and gender-based health disparities; 2) to integrate sexual
and reproductive health services, gender-based violence
services, and HIV services; 3) promote better research into
…women are at the
mercy of their health
insurance provider for many
essential and life-saving
prevention services…
…the provision of these
prevention services, free of
cost, mean a phenomenal
healthcare win for all
women, especially women
living with HIV…
Mujeres Adelante 19
ALQ June 2012 – Special edition incorporating MujereS adelante
Women changing the course of the HIV epidemic
the factors that create gender-related health disparities; and
4) incorporate specific, evidence-based goals addressing
HIV among women, including HIV-related health disparities
among women of colour in the National HIV/AIDS Strategy
Implementation Plan.30
The White House Working Group has the potential to
be a powerful governmental body by providing a space for
forethought and coordination in the implementation of policy
impacting women in multiple facets of our lives. Yet to date,
the formation of the Working Group has garnered little to no
media attention, and as of the time of this writing it remains
to be seen what power it will have to actually shift policy. It is
PWN’s hope that the 2012 International AIDS Conference will
bring some bold announcements, including amendments to the
National HIV/AIDS Strategy, that explicitly address the needs
of women living with and vulnerable to HIV.
FOOTNOTES:
1. The U.S. National HIV/AIDS Strategy for the United States, July 13,
2010. [www.whitehouse.gov/sites/default/files/uploads/NHAS.pdf]
2. The Patient Protection and Affordable Care Act (P.L. 111-148),
[hereinafter The Affordable Care Act]. [www.gpo.gov/fdsys/pkg/
BILLS…/pdf/BILLS-111hr3590enr.pdf]
3. U.S. Positive Women’s Network Policy Agenda can be accessed at
www.pwn-usa.org/policy/policy-agenda.
4. Armstrong, W., et al. 2011. ‘Gender, Race, and Geography: Do
They Matter in Primary Human Immunodeficiency Virus Infection?
Editorial Commentary’. In: Journal of Infectious Diseases, 203,
pp437-438.
5. The U.S. National HIV/AIDS Strategy for the United States, July 13,
2010.
6. Monitoring the U.S. National HIV/AIDS Strategy From a Gender
Perspective. September 2010. [www.pwn-usa.org/wp-content/
uploads/2011/02/NHAS-GENDER-MONIT9-28-2010.pdf]
7. Ibid.
8. Ryan White Part D Fact Sheet, AIDS Alliance for Children Youth and
Families. [www.aids-alliance.org/policy/aids-alliance-ryan-white-partd-
2012-advocacy-fact-sheet.pdf]
9. Armstrong, W., et al. 2011. ‘Gender, Race, and Geography: Do
They Matter in Primary Human Immunodeficiency Virus Infection?
Editorial Commentary’. In: Journal of Infectious Diseases, 203,
pp437-438.
10. Diagnosis, Sexuality, Choice. March 2010. [www.pwn-usa.org/wpcontent/
uploads/2011/03/PWN-HR-Survey-FINAL.pdf]
11. Mahon, N. 2012. PACHA Meeting Examines Women and HIV, Other
Issues at Winter Meeting: Blog.AIDS.Gov (March 12, 2012). [http://
blog.aids.gov/2012/03/pacha-meeting-examines-women-and-hivother-
issues-at-winter-meeting.html]
12. 45th Presidential Advisory Council on HIV/AIDS Meeting, February
28-29, 2012. Agenda and Presentations on Women & HIV. [www.aidsalliance.
org/policy/pacha/]
13. The Affordable Care Act.
14. Brief for Lambda Legal et al. as Amici Curiae in Support of Petitioner
on the Minimum Coverage Requirement Issue. [www.lambdalegal.org/
in-court/legal-docs/dept-of-hhs_us_20120113_brief-for-amici-curiae]
15. U.S. Centers for Disease Control and Prevention, Defining Health
Disparities. [www.cdc.gov/nchhstp/healthdisparities/]
16. National Women’s Law Center. 2012. Turning to Fairness: Insurance
discrimination against women today and the Affordable Care Act.
[www.nwlc.org/sites/default/files/pdfs/nwlc_2012_turningtofairness_
report.pdf]
17. See www.healthcare.gov/?gclid=CLD33d6_jK8CFaESNAodXxF5bg.
18. Health Care Reform Update. April 12, 2010. Treatment Access
Expansion Project [www.taepusa.org/Portals/0/Documents/Health%20
Care%20Reform%20Update%204-12-2010.ppt]
19. Kaiser Family Foundation. March 2012. Women and HIV Fact Sheet.
[www.kff.org/hivaids/upload/6092-10.pdf]
20. White House: Health Care Reform for Women. [www.whitehouse.gov/
files/documents/health_reform_for_women.pdf]
21. 30 for 30 Campaign Briefing Paper: Making HIV Care and Treatment
Work for Women (2012). [www.hivlawandpolicy.org/resources/
download/712 [hereinafter Health Care Reform for Women]
22. The Affordable Care Act.
23. Health Care Reform for Women.
24. Health Care Denied, Healthreform.gov. [www.healthreform.gov/
reports/denied_coverage/index.html]
25. The Affordable Care Act.
26. Health Care Reform for Women.
27. Women’s Preventive Services: Required Health Plan Coverage
Guidelines, U.S. Health Resources and Services Administration
(HRSA). [www.hrsa.gov/womensguidelines/]
28. Diagnosis, Sexuality, Choice. March 2010.
29. Presidential Memorandum – Establishing a Working Group on the
Intersection of HIV/AIDS, Violence Against Women and Girls, and
Gender-related Health Disparities. March 30, 2012. [hereinafter
White House Working Group] [www.whitehouse.gov/the-pressoffice/
2012/03/30/presidential-memorandum-establishing-workinggroup-
intersection-hivaids]
30. White House Working Group.
Naina Khanna and Brook Kelly are with
The U.S. Positive Women’s Network (PWN), a project
of WORLD. For more information and/or comments,
please contact Brook at bkelly@womenhiv.org
Mujeres Adelante 20Gender inequality and its effect on HIV testing and disclosure
Special edition incorporating MujereS adelante – June 2012 ALQ
Sierra Mead
South Africa offers a model of seemingly endless
proof that violence increases women’s risk of
HIV. Research suggests that women’s economic
dependence, coupled with male abuse of women,
compromises their ability to insist on safer sexual
practices in relationships1, thereby placing them at
higher risk of HIV transmission.
Introducti on Coupled with various statistical data suggesting
that violent and controlling men engage more
often in risky sexual practices and, therefore, are
more likely to have STI’s,2 there is little doubt that violence
is linked to HIV transmission in regards to South African
women. Furthermore, there is an assessment that has received
less attention and deliberation, but is equally as critical to the
discussion of HIV transmission: the real risk of violence as a
response of HIV status disclosure.
There are many barriers that restrict South Africans,
especially South African women, from learning their HIV status
through voluntary testing. There are the classic risks of stigma,
discrimination and gossip, isolation from friends and family,
and/or rejection on social, professional, and economic levels.
While these are certainly serious problems with the current
social climate, they also pose a problem to the prevention of
HIV, because few people are inclined to submit to these risks
and get tested for HIV. There is a less spoken peril facing South
African women who avoid HIV testing and disclosure for fear
of a violent reaction from their partner and/or families.
Because of South Africa’s firm cultural elevation of
patriarchy, women are perceived as inferior to men and also are
generally socially and economically dependent on them. Due to
South African males’ practice of exerting perpetual domination
over women in society, women receive less education, endure
harassment, rely on men economically, and are at higher risks
for acquiring HIV, because women are least in the position
to demand and dictate their sexual rights. The patriarchy in
society has such a firm grasp on women that fear of intimate
partner violence can lead to women not getting tested for HIV,
which not only puts them at risk, but violates their fundamental
human right to participate in any decision affecting their
personal health.3
HIV testing is a ‘tool’ that could hypothetically reduce
the transmission of HIV because, among other things, it
increases people’s knowledge and awareness of their status and
helps direct those with positive tests to antiretroviral therapy;
however there are too many barriers blocking South Africans
from getting tested for the potential of HIV testing to become
a reality.
The common mindset…
Gender inequality and its effect on HIV testing and disclosure
Mujeres Adelante 21
ALQ June 2012 – Special edition incorporating MujereS adelante
Gender inequality and its effect on HIV testing and disclosure
Because of
gender inequality,
broaching the subject
of HIV testing
in a culture that
customarily refuses
to discuss sex could
result in emotional,
psychological, and/or physical violence. Women automatically
fear their partner’s reaction to the discussion or to the disclosure
of their positive status, creating a barrier and reason not to
participate in HIV testing. Generally, both men and women in
South Africa view the initiation of HIV testing as a woman’s
responsibility, because she attends the clinic and is, to a certain
extent, responsible for family planning.
HIV testing and taking responsibility to initiate discussion
of HIV testing in a household should not rest solely on
the women. Both men and women need to become more
comfortable with communication about sex, condom usage,
and HIV testing. However, this cannot be accomplished until
the groundwork is laid and men are of equal economic, social,
and professional status to women. Because of the deep roots
of patriarchy in South African society, this mindset shift would
alter the deeply bound philosophy and actual reality of gender
inequality burnt into the minds of the youth at a young age.
Until gender inequalities are overcome, it is likely women
will live in fear of violence as a reaction to their HIV status
disclosure, as well as fear to get tested for HIV.
Patriarch y in South Africa
The medley of ethnicities in South Africa differ from one
another in various ways. However, whether the culture’s roots
are Afrocentric or Eurocentric, they are all deeply influenced
by one common institution: Patriarchy. Today, South African
women of every sector of society and cultures are experiencing
an uneven power relationship with the men in their family and
community, as well as in economic, and social settings.
Patriarchy was once the ‘cherished’ and ‘honourable’ social
belief that the father is the leader and protector of the family circle,
but has developed into an absolute norm, value, and institution
of paramount importance in society, where a father’s leadership
is dominant and is
extended from merely
the spheres of the
family to all realms
of society and
social intercourse.4
Correlating with the
development of the
male into a dominant
figure of society is the
shift of women’s position of inferiority to men. With what started
as a conception that the male must protect his family, and, therefore
his wife and daughters, has expanded, justified by sexism, into the
seemingly social acceptance that women are ‘intellectually inferior
to men and consequently not suitable for positions of management,
in the spheres of education, and elsewhere’.5
…few people are inclined
to submit to these risks
and get tested for HIV…
…this mindset shift
would alter the deeply
bound philosophy and
actual reality of gender
inequality…
Mujeres Adelante 22Gender inequality and its effect on HIV testing and disclosure
Special edition incorporating MujereS adelante – June 2012 ALQ
Because of this conclusion, South African women are
…kept in their position of subservience through measures
such as less educational opportunities than men,
economic dependence, physical harassment, exclusion
from leading roles in education, politics, the church and
society at large.6
Subsequently, women have come to
accept their inferior position in society as a
‘natural’ and ‘irreversible’ aspect of life.
Indeed, patriarchy has become such a
normal part of life in South Africa, that it is
hardly recognised as a harmful influence in
society. Traditional practices, like polygamy,
encourage gender inequality; there is a
greater expectation and acceptance of men
to have multiple partners, because of the
cultural mindset that men biologically need more sex than
women.7 Zulu and Xhosa cultures, for instance, celebrate
men with multi-sexual partnerships, rationalising that it
validates one’s manhood, and even have two complementary
terms for such men: isoka (playboy) and amakrwala (initiated
men).8 These terms, intentional or not, glamorise gender
inequality. Feminist writer and academic Pumla Dineo Gqola
explains that,
…sex with multiple partners is so entrenched in South
Africa that it is a religion, a basic moral philosophy
for most people here. It is often simply called culture
or, specifically, African culture. Political leaders who
marry an increasing number of wives and royalty that
flaunts an equal number of wives and concubines are
highly visible.9
South Africa has one of the world’s most democratic
constitutions, and while it is true women have gained
substantial rights on paper, gender
inequality is prevalent in reality. ‘Many men
believe they are the custodians of African
culture and regard women as inferior, and
believe that women should obey men’,10
which, in turn, leads to the justification of
gender-based violence and intimate partner
violence. In some ethnic spheres, women
are still viewed as chattel owned by their
father and eventually as the property of their
husbands; therefore society requires women
to obey the men’s commands and condones violent punishment
or sexual abuse for ‘misbehaviour’ or failure to obey the
male’s rule.11
When distinguishing the reasons behind gender-based
violence and intimate partner violence as an outcome of
disclosure of HIV status, patriarchy and the gender inequality
that ensues are not even the underlying problems. The common
mindset that the perpetual state of gender inequality, economic
reliance on men, social discrimination, and gender-based abuse
cannot be altered or improved is, in actuality, what impedes any
progress made to improve women’s standing in society or the
removal of barriers to HIV testing.
…patriarchy has become
such a normal part of life
… it is hardly recognised
as a harmful influence in
society…
Mujeres Adelante 23
ALQ June 2012 – Special edition incorporating MujereS adelante
Gender inequality and its effect on HIV testing and disclosure
Former Constitutional Court Justice Abie Sachs outlines
the challenge that the nature of sexism and patriarchy’s
complex historical roots pose in the response to gender barriers.
Justice Sachs reflects that
…Indeed, [patriarchy] it is so firmly rooted that it is
frequently given a cultural halo and identified with the
customs and personality of different communities. Thus, to
challenge patriarchy, to dispute the idea that men should
be the dominant figures in the family and society, is seen
not to be fighting against male privilege but as attempting
to destroy African tradition or subvert Afrikaner ideals or
undermine civilised and decent British values.12
With the expectation of male dominance in every aspect of
society comes the warped portrayal of manhood perpetuated
by the expectation of gender roles in sexual relationships
and activities.
Male dominance and its
correlati on with HIV
Gender is statistically related with the
spread of HIV; the gender gap in people
between the ages 20-24 in South Africa who
are living with HIV is wide. An alarming
24.5% of women (20-24 years) are living
with HIV, as compared to 7.6% of men in the
same age group.13 Intimate partner violence
is also correlated with the high percentage
of women living with HIV, and a 2011
study discovered that
young men (under
25 years) who had
been physically
violent towards a
female partner have
twice the chance of
acquiring HIV, as
men of that age who had not been violent.14 HIV prevalence
is significantly higher in men who are repeatedly violent
towards their partner, and there is substantial evidence
that a woman’s exposure to violence increases her risk
of being infected with HIV. The construction of values
and beliefs that surround masculinity is tied to gender
dominance in sexual relationships and inhibit women’s basic
right to protection.
Because of the patriarchal society, women are usually
subjected to violence as a result of their perceived
‘misbehaviour’ and non-conformity to how
a woman is socially and culturally expected
to behave. Women generally do not possess
the ability to negotiate abstinence or
condom use, and are fearful or embarrassed
to discuss sex with their partners.15
HIV testing
Eighty percent of people living with
HIV do not know their positive status.
Testing for HIV is an important factor in
…the common mindset
… is, in actuality, what
impedes any progress
made to improve women’s
standing in society or the
removal of barriers to
HIV testing…
…stigmatism associated
with HIV testing is enough
for most people to avoid
HIV testing…
Mujeres Adelante 24Gender inequality and its effect on HIV testing and disclosure
Special edition incorporating MujereS adelante – June 2012 ALQ
the ultimate decrease of HIV transmission. HIV testing is a
‘tool’ that potentially enables people to cope with the anxiety
associated with the uncertainty of not knowing, promotes safer
sex, and empowers individuals to protect themselves from the
risk of HIV transmission. The early detection of HIV may also
improve medical and psychological support for people living
with and vulnerable to the virus. Research has shown that
HIV testing can reduce high-risk sexual practices and can
decrease rates of sexually transmitted infections.16 Those who
get tested can be directed to adequate treatment of ART, AZT, or
HAART. In reality, however, studies show that only one in five
South Africans, who know about HIV testing, have been tested
for HIV.17
Stigmatism associated with HIV testing is enough for most
people to avoid HIV testing, but for women, there is the added
element of gender inequality and potential risk that testing
and disclosure of their status to their partner will result in
the loss of economic support, blame,
abandonment, physical and/or emotional
abuse, and/or disruption of family relations.18
Although it is clearly stated in the National
Health Act of 2003, Section 8(1), that: A
person has the right to participate in any
decision affecting her/his personal health and
treatment,19 often times women, especially
pregnant women, get pressured by nurses
and society to get tested, even if they are not
prepared for the ramifications. On the other
hand, there are cases when women avoid
clinics all together for
fear of being coerced
into getting tested, and
eventually having to
disclose a positive status
to their partner.20
Because women are
most likely to attend
clinics, and therefore more likely to get tested or be
coerced into getting tested, both men and women
have come to the conclusion that HIV testing is ‘a
woman’s job’. In 2010, the NIMH (National Institute
of Mental Health) Project conducted a study that
examined South African women and men negotiating
HIV risk and relationship intimacy. The NIMH report finds
that, ‘both men and women usually reported that it was the
female partner who was expected to initiate discussions’.21
Because of the patriarchal prevalence, it
seems women have no choice but to accept
responsibility to initiate discussions of
HIV and seek healthcare services. Is it not
ironic that the ideal of patriarchy originated
from the social belief that the father is the
leader and protector of the family circle?
But, unfortunately, that fundamental
title does not apply when it comes to the
uncomfortable, difficult, and emotional
task of confronting the reality of HIV. That
is a challenge for the women to overcome.
…it seems women
have no choice but to
accept responsibility to
initiate discussions of
HIV and seek healthcare
services…
…women at risk of abuse
when they try to practice
their basic rights…
Mujeres Adelante 25
ALQ June 2012 – Special edition incorporating MujereS adelante
Gender inequality and its effect on HIV testing and disclosure
A 25-year-old female in the study stated:
It is not easy for a male person to think that they need
to test because commonly males do not really care that
much about [testing]. The problem [of testing] is with
us females.22
However, as mentioned above, as a result of gender
inequality, women do not possess the ability to negotiate
abstinence or condom
use, and are fearful or
embarrassed to discuss
sex with their partners,
so it is unrealistic
to expect women,
who are stripped of
their sexual rights, to
comfortably initiate a
discussion with their
partner about HIV and
HIV testing. Despite
the expectation for
women to initiate discussions on HIV, the study comments that
women ‘generally reported an inability to persuade a reluctant
or defiant partner to test’, and the man relied on the female
partners’ status to determine his own.23 It has been proven
that women who are tested in greater numbers than men and
with limited support, are vulnerable to stigma, discrimination,
abandonment and violence.24 Men’s lack of involvement in
family planning, as well as their perpetual intimidation of
women, has resulted in a lack of perceived responsibility for
controlling reproduction and STIs.25
Violence as a result of HIV disclosure
There are studies conducted in South Africa that highlight
the fear of violence at disclosure and show that women are at
risk of negative outcomes when disclosing their HIV status
to male partners. However, it might not be clear how the
post-disclosure violence compares to the level of violence in
the relationship before disclosure.
The World Health Organization (WHO) conducted a study
in sub-Saharan Africa that focused on intimate partner violence
and HIV. The study subsequently addresses violence as a result
of disclosure to one’s sexual partner and found that:
…women were afraid to ask for money or permission
from their husbands to attend HIV/AIDS facilities or seek
information and in some cases explicitly forbidden from
taking HIV tests.26
The study shows 16-51% of women from Tanzania, South
Africa and Kenya did not disclose their HIV status to their
partner for fear of violence.
A study done by Amnesty International in 2008 in the
Mpumalanga and KwaZulu Natal provinces of South Africa
reveals similar findings where, because the woman’s partner
is in denial about his own HIV status, he resents that she
goes to the clinic; some women experienced abuse or active
prevention by partners when they tried to access health services
or medication.27 In the situations of intimate partner violence,
…it is unrealistic to expect
women, who are stripped
of their sexual rights,
to comfortably initiate
a discussion with their
partner about HIV and
HIV testing…
Mujeres Adelante 26Gender inequality and its effect on HIV testing and disclosure
Special edition incorporating MujereS adelante – June 2012 ALQ
the effectiveness of
post-test counselling
services for people
with HIV, as well
as administering
educational services
to the general public
would improve the
current attitude adopted by many South Africans towards HIV.
South Africa’s National Strategic Plan30 addresses the
challenges of HIV risks, and maps out the government’s steps
that will be taken towards reducing new HIV infections and
discrimination. The NSP recognises the need for education,
improved access to information and legal remedies to
…reduce vulnerabilities and remove structural barriers to
accessing services: promote gender equality and remove
harmful gender norms.31
Increased awareness and education will help reduce
HIV-related stigma and discrimination, and additional
skills training and educational programmes for women
will, hopefully, reduce their economic dependence on men.
HIV testing services should begin to anticipate and address the
possible consequences of violence for women disclosing their
positive HIV status to their partner; it is important for these
services to include skills and capacity assisting women with the
process of disclosure. These changes can be initiated, as they
are mechanical modifications, and can be made by improving
government standards and systems. Violence as a result of
the study reports that:
…very few of the women…who had gone to a clinic
seeking medical care for injuries or advice about
domestic violence had been referred on to support
services or a shelter by the clinic.28
Not only are women at risk of abuse when they try to
practice their basic rights, they also do not have a proper support
system or counselling platform to manage their predicament.
The Amnesty International study found that in this environment
of gender-based inequality, women experience harassment
or violence when they test positive and wish to disclose
their status.29
Conclusi on
In the attempt to reduce HIV transmission, voluntary
disclosure has been identified as an important factor, because
its ramifications, amongst other things, potentially lead to safer
sex practice and guide both men and women to adequate and
timely treatment and services. In order to address the barriers
that hinder people from
getting tested for HIV,
the public needs to
modify its outlook on
HIV stereotypes and
stigma to provide
support for both
women and men with
HIV. Addressing
…women at risk of abuse
when they try to practice
their basic rights…
…women experience
harassment or violence
when they test positive
and wish to disclose their
status…
Mujeres Adelante 27
ALQ June 2012 – Special edition incorporating MujereS adelante
disclosure, however, is a more challenging problem to address
because, as explained above, the violence is a product of the
deeply rooted cultural institutions of patriarchy and perpetual
gender inequality.
The greatest challenge is changing the powerful social
attitude that embraces gender inequality to the extent where
most South Africans cannot imagine a life without it. To
reiterate former Constitutional Court Justice Abie Sachs:
…to challenge patriarchy…is seen not to be fighting
against male privilege but as attempting to destroy
African tradition or subvert Afrikaner ideals or undermine
civilised and decent British values.32
Until mindsets shift and women no longer face gender
inequality, women will continue to avoid getting tested for HIV,
because the fear of living with HIV and not knowing, outweighs
the possible risks and consequences of abandonment, rejection,
discrimination, loss of economic stability, and/or violence as a
result of HIV status disclosure.
FOOTNOTES:
1. Mindry, D. et al. 2011. ‘Looking to the Future: South African men
and women negotiating HIV risk and relationship intimacy’. In:
Culture, Health, & Sexuality, 5th ser. 13: 90. Global Health. [http://
globalhealth.med.ucla.edu/publications/mindry.pdf]
2. Jewkes, R. et al. 2011. ‘The Relationship between Intimate Partner
Violence, Rape and HIV amongst South African Men: A Cross-
Sectional Study’. In: Plos One E24256 6.9, p1. Plos One: Accelerating
the Publication of Peer-reviewed Science. [www.plosone.org/article/
info%3Adoi%2F10.1371%2Fjournal.pone.0024256#ack]
3. South Africa National Health Act (Act 61 of 2003).
4. Coetzee, D. 2001. ‘South African education and the ideology of
patriarchy’. In: South African Journal of Education 21.4, 2001, p300.
[www.ajol.info/index.php/saje/article/viewFile/24919/20531]
5. Ibid, p301.
6. Ibid.
7. Mindry, D. et al. 2011. ‘Looking to the Future: South African men and
women negotiating HIV risk and relationship intimacy’. In: Culture,
Health, & Sexuality, 5th ser. 13:595.
8. Ngubane, S. 2010. Gender Roles in the African Culture: Implications
for the Spread of HIV/AIDS. Thesis. Stellenbosch University, South
Africa.
9. Ibid.
10. Ibid.
11. Ibid.
12. ‘Judicial Selection Process’. Courting Justice. [www.courtingjustice.
com/JudicialSelection.html]
13. Harrison, A. et al. 2006. ‘Gender role and relationship norms among
young adults in South Africa: Measuring the context of masculinity
and HIV risk’. In: Journal of Urban Health, 83.4, pp709-22. [www.
ncbi.nlm.nih.gov/pmc/articles/PMC2430491]
14. Jewkes, R. et al. 2011. ‘The Relationship between Intimate Partner
Violence, Rape and HIV amongst South African Men: A Cross-
Sectional Study’. In: Plos One E24256 6.9, p3.
15. Ngubane, S. 2010. Gender Roles in the African Culture: Implications
for the Spread of HIV/AIDS. Thesis. Stellenbosch University, South
Africa.
16. Meiberg A. et al. 2008. ‘Fear of Stigmatization as Barrier to Voluntary
HIV Counseling and Testing in South Africa’. In: East African Journal
of Public Health, 5.2, pp49-54. [www.bioline.org.br/pdf?lp08011]
17. Kalichman, S. C., & Simbayi, L. C. 2003. ‘HIV Testing Attitudes,
AIDS Stigma, and Voluntary HIV Counselling and Testing in a Black
Township in Cape Town, South Africa’. In: Sexually Transmitted
Infection Journal, 79.6, pp 442-47. [www.ncbi.nlm.nih.gov/pmc/
articles/PMC1744787/pdf/v079p00442.pdf]
18. Meiberg A. et al. 2008. ‘Fear of Stigmatization as Barrier to Voluntary
HIV Counseling and Testing in South Africa’. In: East African Journal
of Public Health, 5.2, pp49-54.
19. South Africa National Health Act (Act 61 of 2003).
20. Wingood, G. M. et al. 2008. ‘HIV stigma and mental health status
among women living with HIV in the Western Cape, South Africa’.
In: South African Journal of Science, 104.5-6, pp237-40. [www.scielo.
org.za/scielo]
21. Mindry, D. et al. 2011. ‘Looking to the Future: South African men and
women negotiating HIV risk and relationship intimacy’. In: Culture,
Health, & Sexuality, 5th ser. 13, p590.
22. Ibid, p596.
23. Ibid.
24. Amnesty International. 2008. I Am at the Lowest End of All: Rural
Women with HIV Face Human Rights Abuses in South Africa. [www.
amnesty.ca/amnestynews/upload/AFR530012008.pdf]
25. Mindry, D. et al. 2011. ‘Looking to the Future: South African men and
women negotiating HIV risk and relationship intimacy’. In: Culture,
Health, & Sexuality, 5th ser. 13, p599.
26. Coalition on Women and AIDS. Violence Against Women
and HIV/AIDS: Critical intersections intimate partner
violence and HIV/AIDS. [www.who.int/hac/techguidance/pht/
InfoBulletinIntimatePartnerViolenceFinal.pdf]
27. Amnesty International. 2008. I Am at the Lowest End of All: Rural
Women with HIV Face Human Rights Abuses in South Africa. p58.
28. Ibid.
29. Ibid, p62.
30. South Africa National Strategic Plan on HIV, STIs and TB, 2012 –
2016.
31. Ibid, p29.
32. ‘Judicial Selection Process’. Courting Justice.
Gender inequality and its effect on HIV testing and disclosure
Sierra Mead is a political science major at
George Washington University and an intern at the
AIDS Legal Network (ALN). For further information and/or
comments, please contact her at sierra.mead@gmail.com.
Mujeres Adelante 28Access to reproductive and maternal healthcare for women living with HIV in Asia
Special edition incorporating MujereS adelante – June 2012 ALQ
were married or living with a partner, 21% were widows or no
longer with a partner, and 2% had never married or lived with
a partner. About half (53%) were dependent on their families
for income. Respondents had been diagnosed with HIV for a
mean of 3.6 years (range: 0-18 years).The majority (56%) were
diagnosed prior to their most recent pregnancy, 27% during
pregnancy and 10% after delivery. Cambodia recorded the
highest percentage of women who knew their HIV status prior
to their recent pregnancy (83%); in India, a majority (73%) was
diagnosed during pregnancy.
Key Findings
Counselling
Although the vast majority of women received pre- and
post-test counselling, in India, only 50% of women who
tested during pregnancy received pre-test counselling, and
overall only 9% of women who said the test was not voluntary
received post-test counselling. Some women were unaware of
being tested for HIV when the test was done, and results were
often given to family members. Indian women reported that
pre-test counselling often was more persuasion to be tested, than
actual counselling.
Some women were given no hope on diagnosis. A doctor
told one woman, ‘get ready because you are going to be dead
soon’. Many women were given misinformation by doctors:
Susan Paxton
Within this context, the Women’s Programme of
the Asia Pacific Network of People Living with
HIV conducted in 2011 a study on positive
women’s experiences of accessing reproductive and maternal
health services in six Asian countries.
The study used quantitative and qualitative methods: a
survey among 757 women (Bangladesh 33, Cambodia 200,
India 172, Indonesia 109, Nepal 40, and Vietnam 203), as well
as 17 interviews and 10 focus group discussions. Two women
living with HIV from each of the study countries were trained
as data collectors.
Study sample
Women who participated in the study were all living with
HIV, over 16 years old, and had been pregnant within the
past 18 months. Convenience sampling was carried out using
networks of people living with HIV. Most respondents were
members of a network (Bangladesh 97%, Cambodia 40%, India
43%, Indonesia 35%, Nepal 100%, Vietnam 60%).
The average respondent was 30 years old (range:
17-47 years), and had at least one existing child. Most women
had either primary or secondary school education (71%);
57% lived in urban settings and 53% in rural. Overall, 77%
Positive and pregnant… how dare you1
Access to reproductive and maternal healthcare for women living with HIV in Asia
The scaling-up of testing of pregnant women in order to prevent vertical transmission of HIV from mother
to child during pregnancy and breastfeeding has led to pregnant women living with HIV facing stigma and
discrimination, including poor quality care or refusal of antenatal care and delivery services, and increased
coercion to be sterilised.
Mujeres Adelante 29
ALQ June 2012 – Special edition incorporating MujereS adelante
Access to reproductive and maternal healthcare for women living with HIV in Asia
Some women did not reveal their HIV status to their
gynaecologist for fear of discrimination. In Cambodia,
incentives, such as free doctor’s visits or free delivery are
offered to encourage women to disclose in order for them to
receive appropriate treatment, but many women choose to pay
the extra costs, because they are afraid of the stigma they may
face otherwise.
Antiretrovirals
The majority of women (64%) were taking ARVs, with
50% initiating them before their current pregnancy; 29% of
respondents were on a regimen that included Stavudine (d4T),
no longer recommended by WHO. Women suggested continued
use of d4T is because government health departments have lots
in stock.
Most women not on ARVs said their CD4 cell count was
high, yet only 4% initiated ARVs at CD4 counts greater than
350 and the majority did not start until their count was below
200. Only in Cambodia are women starting ARVs once their
CD4 count drops below 350. Some women have never had
a CD4 count or discussed ARVs with their doctor. Some
women stopped ARVs during pregnancy, because of adverse
side effects.
Contraception
Condoms were
the most preferred
contraceptive method
(64%), but are not used
consistently, because
partners object to
one was told that the
risk of her baby getting
HIV was 60%; another
that if she and her
partner did not have
safe sex there is a risk
of transmission of HIV
to the baby; another
woman was told to take paracetamol daily for a year.
The importance of counselling provided by women
living with HIV, covering a range of issues and available on a
long-term basis, was a recurring theme in interviews and focus
group discussions. Women said peers understand their issues
and help them open up and ask questions.
When I received the news I was despairing but then I was
referred to [the peer support organisation] and I received
peer counselling and I saw other positive women who
gave birth to a negative child and then I became hopeful.
[Nasrin, Bangladesh]
Disclosure
Over 90% of women had told their husband or partner about
their HIV status and about half had also disclosed to female
family members. In India, disclosure to family was often
made by health personnel without the consent of the woman.
Many women faced discrimination as a result of disclosure,
particularly from in-laws.
They beat me and treated me very badly and used loose
words on my character throughout the neighbourhood.
They told everybody I had HIV then tried to force my
husband to abandon me. [Rashma, India]
…pre-test counselling
often was more persuasion
to be tested, than actual
counselling…
…many women faced
discrimination as a result of
disclosure, particularly
from in-laws…
Mujeres Adelante 30Access to reproductive and maternal healthcare for women living with HIV in Asia
Special edition incorporating MujereS adelante – June 2012 ALQ
(range 3-6%). Overall, 9% said their mother or mother-in-law
was also involved in decisions around pregnancy.
My husband and my mother-in-law make all the decisions.
I’m usually not consulted. I have many concerns and
questions in my heart, but I have never discussed them
with anyone, not even my husband or the counsellor.
[Pragya, India]
My mother-in-law said she needs at least one grandson.
I didn’t want to get pregnant once I knew my status, but
she didn’t know my status and she pressurised me to have
a child. She told my husband to find another woman to
marry if I didn’t get pregnant… When I was six months
pregnant I had an ultrasound to determine the sex of the
baby and when we knew it was a boy I went ahead and
gave birth. [Sunita, Nepal]
Few women were able to find supportive healthcare workers
during their pregnancy.
When I went to the obstetrics department the staff
were afraid of me and said, ‘How dare you have a
baby. Aren’t you afraid to die?’ The doctor said, ‘You
are already positive so your health is not good so you
should have an abortion’. He gave me many reasons why
I should not continue with the pregnancy. I said to the
doctor that I have a right to have a baby under the law.
[Kieu, Vietnam]
Abortion
Overall, 125 of the women no longer pregnant (22%)
reported they had an abortion (Bangladesh and India <1%,
them, find them inconvenient or cannot afford them.
When the doctor provides counselling on pregnancy
prevention they should also provide counselling to men
because it’s men who want to have the babies. Most
women who have a pregnancy don’t want it. It’s the men.
[Semlay, Cambodia]
Condoms are usually the only contraception promoted
among women living with HIV, whereas they need methods that
they can control – IUDs, pills, injectables or female condoms.
Opportunities for
counselling on family
planning were few,
as doctors often
discourage discussion
about sexual or
reproductive health.
Pregnancy
Of the 573 women who were no longer pregnant at the time
of the survey, 72% had live births and 22% had an abortion,
and 6% miscarried or had still births. Overall, 37% of women
reported their recent pregnancy was unwanted (Bangladesh
33%, Cambodia 44%, India 10%, Indonesia 33%, Nepal 48%,
Vietnam 53%).
Less than half of respondents (45%) said decisions
regarding their pregnancy were made together with their
partner, 21% said their husband alone makes these decisions,
and 11% said they alone make them. Indonesia, Nepal and
Vietnam had substantially more women as sole decision makers
(range: 13-19%) compared to Bangladesh, Cambodia and India
…whereas if she had told
them she had HIV, they
would not have done the
procedure…
Mujeres Adelante 31
ALQ June 2012 – Special edition incorporating MujereS adelante
Access to reproductive and maternal healthcare for women living with HIV in Asia
not given a choice to have a vaginal delivery. Women recounted
extreme instances of discrimination at the time of the delivery,
including neglect and abuse by staff and staff refusing to touch
them or bathe their newborn infant. One woman’s mother was
made to wash the blood off the floor after the delivery.
During the delivery of my baby the doctor wanted to put
on two sets of gloves. He had put up on one set of gloves
but the baby was already coming out and the doctor tried
to push it back in so he could put on another set of gloves.
[Saru, Nepal]
I was told to lay down with my feet up [in stirrups]. I
was left alone for hours in labour like that, and nobody
came to check on me. The first baby came out and fell
directly into the rubbish bin under my feet. I could not
do anything because the second baby was coming out
so quickly. When someone finally came to check on me,
the first baby was all black and blue, and dead, and the
second one was halfway out. They did not want to touch
the baby because they did not want to touch my blood.
I heard the second baby cry. He was a real person. But
they took him away before I could properly see him and
put him on oxygen for five hours, and then told me that
he died… I think my babies would have lived if they had
gotten proper treatment but I didn’t say anything because
I didn’t want to hear more harsh words directed at me.
[Navi, Cambodia]
Sterilisation
Overall, 30% of women were encouraged to consider
sterilisation. There was a positive correlation between women
Indonesia 8%, Cambodia 12%, Nepal 25%, Vietnam 44%).
Most occurred specifically because of the woman’s HIV status;
29% of women who had an abortion said the pregnancy had
been wanted.
Many women who were urged to have an abortion faced
considerable discrimination when they went for the procedure.
One woman said staff
tried to refer her to
a specialist hospital
saying that they did
not have the right
equipment and she
had to bribe them
to have an abortion.
Another woman went
to a private clinic
and said she had hepatitis. She was charged more for
‘preventive materials and expensive chemicals to sterilise
the instruments’, but did not face discrimination, whereas
if she had told them she had HIV, they would not have done
the procedure.
When I went for the abortion, I had to wait for all the
negative women to go first. They used three pairs of
gloves and covered all their body with plastic, like a
raincoat, and they wore glasses because they were afraid.
[Hong, Vietnam]
Delivery
Overall, 37% of the 426 deliveries were via caesarean
(Cambodia 7%, India 21%, Nepal 33%, Vietnam 41%,
Bangladesh 54%, Indonesia 67%). Many women said they were
…many rural women come
to the capital for maternal
health services, because
they are guaranteed
confidentiality…
Mujeres Adelante 32Access to reproductive and maternal healthcare for women living with HIV in Asia
Special edition incorporating MujereS adelante – June 2012 ALQ
tubal ligation as well. I wanted to have another child but
I had no choice. [Mai, Vietnam]
Maternal health services
Most women (80%) received some pregnancy-related
healthcare, 12% did not receive any services despite seeking
them and 6% did not seek services. Costs, of transport, doctor’s
fees and laboratory tests, are major factors for many women in
utilising healthcare during pregnancy. In Indonesia, unmarried
pregnant women are ineligible for government health insurance.
One Indonesian woman said it costs her one eighth of her
monthly income to travel to the hospital. A
Cambodian woman said that with the money
it costs to get to the clinic, she can feed her
family. Many rural women come to the capital
for maternal health services, because they
are guaranteed confidentiality. Many women
borrow money to make the trip.
Satisfaction with services ranged from
India 78%, Cambodia 68%, Nepal 68%,
Bangladesh 67%, Indonesia 60%, to Vietnam
34%. Overall 42% of women had difficulty
finding a gynaecologist to care for them
during their pregnancy, and 18% were not
satisfied with the confidentiality afforded them. Only 29%
of women have had a pap smear. Where services are not
integrated, women are shunted between infectious diseases and
reproductive health services, which cost extra time and money.
Most women believe confidentiality could be better maintained
in an integrated healthcare setting.
Several women spoke of discrimination from healthcare
who had caesareans and women who were recommended
sterilisation. The majority of recommendations (61%) came
from gynaecologists and HIV clinicians and were made on the
basis of the woman’s HIV positive status.
In some cases, women did not know whether they had been
sterilised during their caesarean. Several women indicated they
do not have the power to refuse or accept sterilisation, because
their health decisions are made by their husbands or family
members, or the hospital required spousal consent. In some
localities, while the choice was left to the woman, incentives
were offered, such as free formula.
I had a caesarean because my baby was very big, four
Kg. They gave me an injection and then only five minutes
before the operation the doctor asked me, ‘Do you want
to do sterilisation?’. [Sophal, Cambodia]
They had to give me a C-section because my baby was
two weeks overdue but I had to sign a paper agreeing to a
Gynaecologist 41.7%
Family member 9.6%
Outreach worker 9.6%
Self 2.8%
Other/no response 11.9%
HIV doctor 19.7%
Husband/
partner 4.6%
Figure 1: Persons who made recommendation to undergo sterilisation
Mujeres Adelante 33
ALQ June 2012 – Special edition incorporating MujereS adelante
workers. Some nursing staff ask questions such as, ‘How did
you get HIV?’ and ‘Why did you get pregnant?’ in front of
other patients.
We are offered the same services as
negative women, but we are treated
differently. The healthcare worker
won’t sit on the same chair that I have
sat on or use the same pen. When they
look into my mouth to examine my
throat they stand far away and won’t
touch me. [Chau, Vietnam]
Most nurses at the government
hospitals behave badly towards
HIV-positive women. They ignore
us, and make us wait a long time
to see the doctor. The HIV doctors are much better.
[Lani, Indonesia]
Women repeatedly said that they just want to be treated like
normal people.
Infant healthcare
Formula feeding was most commonly practiced,
except in Nepal. In Cambodia, new Ministry of Health
guidelines recommend
breastfeeding, in
line with revised
WHO Guidelines,
which recommend
breastfeeding as a
good option for all babies, including those born to positive
mothers,2 but many women are afraid to breastfeed, even if they
are on ARVs.
They took [my son] away and I didn’t see him for two
days until I was discharged from the hospital. By then he
had already been given formula, so there was no choice
to breastfeed. [Lani, Indonesia]
Of concern, where formula food is not provided, is its
cost. Some women go without food in order to buy formula.
Sometimes they give their baby sugar water.
I did not have any formula and my baby was crying all
night from an empty stomach so the next day my husband
sold my mobile for formula. I felt guilty that I had
brought the child into the world and I cannot feed her.
[Nasima, Bangladesh]
Of the 89 infants who were breastfed, only 35% were on
Access to reproductive and maternal healthcare for women living with HIV in Asia
…care must be taken to
uphold the rights of women
living with HIV…
Bangladesh
Cambodia
India
Indonesia
Nepal
Vietnam
Total
0
20
40
60
80
100
PERCENTAGE
Figure 2: Infant feeding practices, by country
Breastfeeding (exclusive)
Formula-feeding (exclusive)
n=24
n=100
n=119
n=75
n=13
n=87
n=418
Mujeres Adelante 34Access to reproductive and maternal healthcare for women living with HIV in Asia
Special edition incorporating MujereS adelante – June 2012 ALQ
ARV prophylaxis, most from Cambodia and India where ARV
drops were available. Over half the respondents (55%) said
ARVs were available to their infant (Cambodia 73%, Indonesia
62%, India 48%, Vietnam 44%, Nepal 40%, Bangladesh 36%),
but at times access was difficult.
The hospital prescribed the medicine and gave us the
names of four medical stores but they were all out of
stock. The government hospital gives first priority to
babies born at their hospital and refused to sell to us
because we delivered at a different hospital. We finally
found the syrup at a private medical store far from our
home. [Mena, India]
They gave my son AZT while he was in the hospital, and
then I continued to give it to him every six hours until he
was six weeks old. Then I had no more medicine and it
was too expensive to buy. I have not taken him back to
see a paediatrician. I am afraid he is also HIV-positive
and that it is too late… Also, I cannot afford the HIV test
for him. [Riri, Indonesia]
Infants are often prescribed co-trimoxazole after birth but
mothers do not receive adequate information about why this
is important, and many worry that the medicine will harm
their infant.
Current challenges
Government obligations
As governments move to reduce HIV infections among
newborn infants, care must be taken to uphold the rights
of women living with HIV. While many countries have
successful programmes
to prevent vertical HIV
transmission to infants,
strategies to prevent
unwanted pregnancies
among positive women
have largely been
forgotten, and family
planning needs among
women living with HIV
remain high.
All countries involved in this study have signed and
ratified the Convention on the Elimination of Discrimination
Against Women (CEDAW), which affirms women’s rights on
an equal basis with men, including the right to decide freely
and responsibly on the number and spacing of their children.
Governments have an obligation to provide women living with
HIV with a standard of healthcare equal to that provided to
HIV negative or untested women.
Healthcare providers do not consider contraceptive options
other than condoms among positive women. Counselling is
targeted towards the women, but they have as little control as
negative women over condom use, so unwanted pregnancies
are common. Positive women are discouraged from pregnancy,
and many do not want to become pregnant, but they are given
no realistic means to avoid unwanted pregnancies.
Many positive women in Asia experience extreme levels of
discrimination and violations of their rights in relation to their
reproductive health. Many face degrading treatment within
maternal health services and receive little or no information
related to their sexual or reproductive health care. Many women
…strategies to prevent
unwanted pregnancies
among positive women
have largely
been forgotten…
Mujeres Adelante 35
ALQ June 2012 – Special edition incorporating MujereS adelante
are coerced into abortion or sterilisation, because of their
HIV positive status. Constant messages of ‘don’t get pregnant’
result in some women avoiding healthcare during pregnancy,
because of fear of discrimination, and thus missing out on
appropriate antenatal care and ARV prophylaxis.
Many outdated practices continue in Asia, such as the use
of Stavudine and delivery by caesarean section. The correlation
between sterilisations and caesareans is of particular concern.
Mechanisms are needed to regularly disseminate information
on changing WHO Guidelines, so health departments can adopt
more dynamic policies and procedures.
Lack of information and support
Many women want advice about how to get pregnant
safely and deliver a healthy baby, but healthcare workers are
generally unsupportive of positive women’s desire to have
children. Women who
disclose their HIV status
to their doctor need
information and support
to establish a family,
without judgment. They
need to know the risks of
formula feeding versus
breastfeeding, caesarean
sections versus vaginal
delivery, and the benefits
of ARV prophylaxis.
With adequate information, support and care, women can have
successful pregnancies.
Appropriate and ongoing training of positive women
as counsellors and
educators is critical to
increase understanding
of HIV-positive women’s
sexual and reproductive
health and rights (SRHR).
However, few positive
women’s networks are
funded to provide peer support or education. Financial support
is needed for positive women’s organisations at national and
regional level to enable positive women to advocate for their
rights to sexual and reproductive healthcare.
Cost was repeatedly mentioned as a barrier to accessing
services. This is consistent with findings from APN+’s earlier
study on access to HIV services in Asia,3 which found that 79%
of over 1300 women from six countries did not have adequate
financial resources to access services, including transport.
Often women spend all financial resources on the healthcare of
their husband, and are subsequently widowed and poor. Women
living with HIV need sustainable livelihoods, but have limited
opportunities to pursue them, and economic support is missing
from most HIV interventions.
Recommendati ons
Invest in positive women’s organisations
• Increase capacity of positive women’s organisations to
respond to their needs
• Train positive women at national, provincial and
local level about their sexual and reproductive
health and rights and increase women’s capacity in
decision making
Access to reproductive and maternal healthcare for women living with HIV in Asia
…healthcare workers are
generally unsupportive of
positive women’s desire to
have children…
…positive women
are discouraged from
pregnancy, and many do not
want to become pregnant,
but they are given no
realistic means to avoid
unwanted pregnancies…
Mujeres Adelante 36Access to reproductive and maternal healthcare for women living with HIV in Asia
Special edition incorporating MujereS adelante – June 2012 ALQ
• Facilitate positive women’s capacity to advocate for
their sexual and reproductive health and rights
Expand counselling
• Train and employ women living with HIV as
counsellors at government testing centres
• Expand HIV counselling to include psychosocial/
emotional support, ARV treatment, SRHR
advice; consider couple and family counselling
when women do not have decision-making authority;
strengthen referral systems to healthcare services
Uphold positive women’s rights
• Ensure governments fulfil their obligations to protect
positive women’s rights according to international
treaties
• Ensure no woman is coerced into HIV testing,
abortion, sterilisation or caesarean
• Ensure positive women have access to a range of
contraceptive options that they can control, to avoid
unwanted pregnancies
• Ensure WHO Guidelines on ARVs are adopted
• Ensure no positive woman experiences discrimination
within the health sector
• Train obstetric and gynaecological service providers
to be sensitive to the needs and rights of positive
pregnant women; include training on quality of
care and sexual and reproductive health and rights
in clinical management and curriculum training of
healthcare workers
• Integrate services to improve access, utilisation and
follow-up, and reduce discrimination
Expand social security
• Review national guidelines for social services
requirements and expand social welfare
• Provide transport subsidy for mothers on low income
to attend ARV centres
• Improve positive women’s income generation capacity
FOOTNOTES:
1. The full report of this study is available at www.apnplus.org/
publications.
2. WHO. 2010. Guidelines on HIV and infant feeding 2010. Principles
and recommendations for infant feeding in the context of HIV and
a summary of evidence. [www.who.int/child_adolescent_health/
documents/9789241599535/en/]
3. Women’s Program of the Asia Pacific Network of People Living
with HIV. 2009. A Long Walk: Challenges to women’s access to
HIV services in Asia. Bangkok. [www.apnplus.org/main/Index.
php?module=publications&f_id=23]
Susan Paxton is the Asia Pacific Network for
HIV Positive people (APN+) Advisor. For more
information and/or comments, please contact
her at posresponse@gmail.com.
Mujeres Adelante 37
ALQ June 2012 – Special edition incorporating MujereS adelante
MESSAGES FROM AROUND THE WORL D
Messages from around the world
38Women and girls in a
concentrated epidemic
Special edition incorporating MujereS adelante – June 2012 ALQ
Mujeres Adelante Rodelyn Marte, Rose Koenders, Katy Pullen
At the UN General Assembly High-Level Meeting on
AIDS in June 2011, governments committed to a
number of time-bound targets, including halving
sexual transmission of HIV by 2015; eliminating
gender inequalities and gender-based abuse and
violence; and increasing the capacity of women
and girls to protect themselves from HIV by 2015.
Member States of the Association of Southeast Asian
Nations (ASEAN) also reaffirmed their commitment
to these goals in the ASEAN Declaration of
Commitment: Getting to Zero New HIV Infections,
Zero Discrimination, Zero AIDS-Related Death in
November 2011.
Many countries in Asia and the Pacific region,
including ASEAN Member States, are
experiencing concentrated epidemics with key
affected populations identified as most-at-risk. While the 2011
Political Declaration notes that
…each country should define the specific populations
that are key to its epidemic and response based on the
epidemiological and national context.1
The Declaration also drew attention to the need to
…focus on populations that, epidemiological evidence
shows are at higher risk, specifically men who have sex
with men, people who inject drugs and sex workers.2
Focusing attenti on on key affected women and
girls in concentrated epidemics
Putting the issues of women and girls comprehensively on
the HIV response agenda has been no easy task in Asia and the
Pacific, which has a concentrated epidemic. Governments in
the region committing to comprehensively focus on populations
identified as most at risk is, in and of itself, a step forward.
However, the specific needs of women and girls remain
neglected and punitive laws, policies and practices, as well as
stigma, discrimination and violence, continue to increase their
vulnerabilities to HIV and block their access to sexual and
reproductive health services.
A lack of sustained investment in women’s leadership in
the region, especially the leadership of key affected women
and girls, coupled with the limited understanding among
HIV stakeholders of the need for gendered approaches to
HIV responses in concentrated epidemics, present ongoing
challenges. Even where women and girls are empowered
to speak out, where opportunities are provided for them to
Critical ingredients for effective HIV responses…
Women and girls in a concentrated epidemic
Mujeres Adelante 39
ALQ June 2012 – Special edition incorporating MujereS adelante
advocate for their rights, resistance to taking-up issues of key
affected women and girls is encountered from various quarters.
Few openly advocate for women’s empowerment and gender
equality as critical ingredients for effective
HIV responses. When it comes to matching
the political rhetoric of gender with financial
resources, the silence is deafening. The
UNAIDS Addressing Women, Girls, Gender
Equality and HIV Action Framework (2009),
which held so much promise to achieve
a ‘comprehensive, gender-transformative
AIDS response’, stays on the shelf, gathering
dust in the Asia and the Pacific Region.
With little or no funding, some progress
has been made by initiating discussions,
building strategic partnerships and
mobilising support for the issue. In our individual capacities
and as members of regionally-based organisations, mindful of
not compromising the gains in focusing the HIV response to
key affected populations, we have worked collectively to ensure
that even in a concentrated epidemic setting, accountability is
sought for what we, as an HIV community, are doing for key
affected women and girls.
By sharing some of our experiences, including the
challenges we continue to face, we invite discussions from
our region and other parts of the world where concentrated
epidemics exist, and where the needs and rights of women and
girls most at risk of, and most affected by, HIV continue to be
side-lined.
Defining key affected women and girls in
concentrated epidemics
Efforts to address issues of women and girls in concentrated
epidemics have been hindered in the region
by a lack of common understanding of what
populations constitute ‘key affected women
and girls’ – which women and girls are most
at risk of, and most affected by, HIV.
We have started to address this
challenge by clarifying and defining key
affected women and girls among Asia and
Pacific HIV and AIDS organisations and
communities. In an online consultation in
August 2011, which aimed to stimulate
discussion and dialogue on strategies for
addressing the needs and rights of key
affected women and girls in HIV programmes, respondents
shared that they understood key affected women and girls as:
women and girls living with HIV; female sex workers; female
drug users; transgender women; and the wives and the female
partners of men who use drugs, men who have sex with men,
and male clients of female sex workers.
The UNAIDS Guidance for Partnerships with Civil Society,
including people living with HIV and Key Populations (2011)
provides an implied definition of key affected women and girls.
It notes that within key affected populations,
…it will be especially important to recognize the needs of
women and girls who work as sex workers, use drugs and/
or are transgendered. In a number of settings, women and
…resistance to
taking-up issues
of key affected women
and girls is encountered
from various quarters…
Women and girls in a concentrated epidemic
40Women and girls in a
concentrated epidemic
Special edition incorporating MujereS adelante – June 2012 ALQ
Mujeres Adelante girls, as well as adolescents and young people, experience
substantial and in some cases disproportional, impacts of
the epidemic and may be considered key populations.3
A clear, common and explicit understanding of who
are key affected women and girls is essential in advancing
advocacy for their issues. For one, a common understanding
opens up possibilities for solidarity, collaboration and dialogue
among key affected women and girls across different groups.
Furthermore, it counters the invisibilisation of women and girls
within key affected populations.
Evidence-based research
More evidence-based research is needed to guide targeted
interventions for most at risk and affected women and girls
to ensure their specific needs are accurately addressed.
Disaggregation of HIV and related data by age, sex and mode
of transmission will strengthen this evidence.
Partnerships and alliance-building
The UNAIDS Women, Girls, Gender Equality and
HIV Action Agenda recognises the importance of
alliance-building at all levels of
government and civil society, and
of ensuring meaningful and equal
participation of women and girls in
the Agenda’s implementation. Funds
to bring together and create spaces for
the meaningful engagement of and
engagement among key affected women and girls, in all their
diversity, are difficult to mobilise, particularly in concentrated
epidemics settings.
In response, the Unzip the Lips campaign4 was formed
in 2011, with the initial aim of enabling the voices of key
affected groups of women and girls to be heard in the region’s
HIV response. Starting with mobilisations in the lead-up to the
10th International Congress on AIDS in Asia and the Pacific
(ICAAP10), held in August 2011 in Korea, Unzip the Lips
today comprises of an informal group of committed activists,
individuals and organisations from the region working to
address the needs and rights, and ensure the meaningful
participation of key affected women and girls in the contexts of
HIV and gender issues. Unzip the Lips has representation from
and/or engagement with networks of people who use drugs,
female sex workers, people living with HIV, young key affected
populations; women’s rights and sexual and reproductive health
and rights organisations; as well as UN agencies.
Policy advocacy
Safeguarding and promoting the rights of key affected
women and girls is critical if they are to protect themselves
from HIV transmission, overcome stigma,
discrimination and violence, as well as gain
greater access to treatment, care and support.
Efforts to reduce stigma, discrimination
and violence need to be scaled-up to
reduce the barriers to their uptake of
HIV services, and to ensure that women
…the ethical dilemma of
assigning thousands of
women to a known
inferior treatment…
and girls are able to protect themselves from HIV, including in
the context of intimate partnerships. These were the messages
to policymakers from a session on key affected women and
girls at the 10th International Congress
on AIDS in Asia and the Pacific in
August 2011.
Organised by women’s rights groups
and AIDS NGOs from the region, including
the International Community of Women
Living with HIV/AIDS (ICW), and with
financial support from UN Women, the
session facilitated a constructive dialogue
between and amongst key affected women
on barriers to their universal access to
HIV services. Barriers discussed include
lack of women-friendly services, especially
for female drug users and transgender
women; lack of participation in planning and implementation
of health services, which was highlighted by positive women,
female drug users, female sex workers and young key affected
women; and the urgent need to improve sexual and reproductive
health and HIV linkages at the community level. The double
stigma often faced by key affected women within society, and
the lack of programmes in place to address their unique needs,
was also underscored. A key outcome from the session was
the commitment from participants to engage with the Unzip
the Lips campaign and to undertake greater alliance-building
among and between networks and groups of key affected
women in the region.
In February 2012, a side event on Women and Girls was
held at the Asia and the Pacific High Level Intergovernmental
Meeting on HIV/AIDS and MDGs. Four women and a
transgender from community organisations
in the region shared their experiences and
gave recommendations to governmental
leaders, including the Chair of the Meeting,
the President of Fiji, His Excellency
Ratu Epeli Nailatikau. Amongst the speakers
who highlighted the need to address the
violations of rights of women living with
HIV, one shared a story showing the
linkages between gender-based violence and
HIV. The speaker called upon governments
for comprehensive programmes that address
the power dynamics between women and
men, sexual negotiations, and the need for
reproductive and sexual rights of women and girls, so they are
in a position to make their own decisions over their bodies.
Other speakers highlighted the need to address the violations
of rights of women living with HIV. The session ensured
that during the negotiations of the meeting, women and girls
should not be forgotten, and helped to build stronger political
support for women and girls that went beyond the issue of
mother-to-child HIV transmissions.
Across Asia and the Pacific, several national frameworks,
policies and work plans recognise the importance of
intimate partner transmission of HIV, and of developing and
implementing strategies to effectively address this issue in
…when it comes to
matching the political
rhetoric of gender with
financial resources, the
silence is deafening…
Mujeres Adelante 41
ALQ June 2012 – Special edition incorporating MujereS adelante
Women and girls in a concentrated epidemic
Mujeres Adelante 42Women and girls in a
concentrated epidemic
Special edition incorporating MujereS adelante – June 2012 ALQ
achieving the goal of reducing sexual transmission of HIV
by 50 per cent by 2015. If HIV advocacy by and for key
affected women and girls is not supported, and if key affected
populations are not ‘on board’, addressing intimate partner
transmissions cannot be achieved.
To this end, protecting and promoting the rights of key
affected women and girls, as set out in the Convention on the
Elimination of all Forms of Discrimination against Women
(CEDAW), is integral to reducing intimate partner transmission
of HIV and achieving the
commitments and targets
set out in the UN 2011
Political Declaration on
HIV/AIDS and the
ASEAN Declaration of
Commitment: Getting to
Zero New HIV Infections,
Zero Discrimination, Zero
AIDS-Related Deaths.
Turning the tide
To achieve the commitments and targets mentioned above,
the specific needs of key affected women and girls in the Asia
and the Pacific regions must be recognised. The gains made are
precarious, especially in the current environment, and we are a
long way from turning the tide for HIV, and women and girls
in Asia and the Pacific. Providing spaces for participation of
women and girls will always remain important, and we hope
that our efforts have helped to broaden up these spaces for the
future, and to ensure spaces will be secured for key affected
women and girls to be meaningfully involved in decisions that
affect their lives as women and girls, not only leading up to, but
also beyond 2015.
FOOTNOTES:
1. 2011 Political Declaration on HIV/AIDS, para29.
2. Ibid.
3. [www.unaids.org/en/media/unaids/contentassets/documents/
unaidspublication/2012/JC2236_guidance_partnership_civilsociety_
en.pdf]
4. www.unzipthelips.org.
…have worked collectively
to ensure that even in a
concentrated epidemic
setting, accountability is
sought…
Rodelyn Marte, Rose Koenders and Katy Pullen
wrote this article in their personal capacities.
For more information and/or comments,
please contact Rose at rose@asiapacificalliance.org.
Mujeres Adelante 43
ALQ June 2012 – Special edition incorporating MujereS adelante
Achieving women’s health and rights in times of economic austerity
Luisa Orza
The promotion and protection of the health and rights
of women and girls are facing a greater threat than
ever before in the wake of the global funding crisis.
Interrogating the implications of Round 11 cancellation of
the Global Fund to fight AIDS, Tuberculosis and Malaria, and
the budget cuts to the President’s Emergency Plan for AIDS
Relief (PEPFAR), women’s rights activists at the Commission
on the Status of Women agreed that it is time to urgently
realise political commitments around women’s and girls’ right
to health.
In the last decade, the vocabulary of women’s rights
has entered the popular imaginary. Yet, there has been and
continues to be chronic underfunding of women’s rights
issues and programming, resulting in a failure to translate
women’s rights from the realm of the ‘imaginary’ to the realm
of the ‘real’. The lived complexity of women’s rights and the
challenges of exercising rights continue to go misunderstood
or unacknowledged.
People say they are ‘always’ hearing about women,
funding for women, they’re tired of it. How do we make
people understand why it’s important and that it’s more
complex than that?1
In 2011, the Global Coalition on Women and AIDS
(GCWA) worked with partners to support three women-led
initiatives to explore these complexities. These comprised of:
1) a review of women’s on-the-ground realities in relation
to the commitments made in the 2001 UNGASS
Declaration, and the 2006 Political Declaration, during
the lead up to the 2011 High Level Meeting on HIV
and AIDS;2
2) a review of the Global Fund Gender Equality Strategy
to assess the progress, challenges and limitations
of implementation of the strategy, and to make
recommendations on the basis of lessons learnt;3 and,
3) a consultation to ensure that the Global Plan towards
the Elimination of New HIV Infection among
Children by 2015 and Keeping Their Mothers Alive
adequately responds to gender barriers impacting on
women’s access to prevention of vertical transmission
programmes and services at a national level.4
Who decides…?
Achieving women’s health and rights in times of economic austerity
Despite political commitments, women and girls continue to face serious rights violations in the context of
access to healthcare, particularly access to sexual and reproductive healthcare. This is further exacerbated for
women and girls living with and affected by HIV.
Mujeres Adelante 44Achieving women’s health and rights in times of economic austerity
Special edition incorporating MujereS adelante – June 2012 ALQ
The consultations created a space for women to talk in
their own voices to describe their lived realities. They each
revealed (and echoed) the myriad complex and nuanced ways in
which women and
girls are excluded from
– and/or limited in
their ability to access –
information, healthcare
services, psycho-social
care, and other forms
of social support;
are vulnerable to
structural inequalities,
expressed through
stigma, discrimination
and violence; are excluded from meaningful participation in
decision-making processes; and, are catered for primarily in
their role as mothers and agents of reproduction, rather than as
girls and women first and foremost. All of these realities are
exacerbated when coupled with other factors of marginalisation,
such as poverty, a positive sero-status, disability, or
minority sexuality.
We are very visible when we are pregnant and we need
some services. But before and after pregnancy, where are
we? We are invited to talk about programmes for PMTCT
and nothing else.
In the context of HIV, where women now make up
over 50% of people living with HIV globally, and 60% in
sub-Saharan Africa; where young women account for up to 75%
of people living with HIV in the 15 to 24-year-old age group;
and women constitute the fastest growing population of new
infections in several parts of the world5, the failure of policy
and programming (and the corollary budgets and accountability
mechanisms) to address the complexities described by these
consultations is becoming increasingly visible.
Further, as the squeeze on global funding tightens, women’s
organisations, ministries and departments are under more and
more pressure to prove that investments in programmes to
address structural inequalities are not only effective, but that
they constitute ‘value for money’. The investment paradigm
is a double-edged sword for women and girls. On the one
hand, the positioning of gender equality as a critical enabler
in the HIV response (without which return on investment
cannot be assured) has advanced the integration of gender
equality and sexual
and reproductive
health and rights into
mainstream discourse.
On the other, as the
global economic
crisis worsens, and the
emphasis on ‘value
for money’ grows,
systems cannot fail
to pit the worth of
…the promotion and
protection of the health and
rights of women and girls
are facing a greater threat
than ever before in the wake
of the global funding crisis…
…the lived complexity of
women’s rights and the
challenges of exercising
rights continue to go
misunderstood
or unacknowledged…
Mujeres Adelante
one life against another. Ancient oppressions re-emerge. The
old order reasserts itself. No longer the ‘luxury’ of resourcing
women’s health and rights, if to do so does not also boost
the economy.
We need to question the notion of investment as being
around growth and economics and not necessarily about
resourcing women to access their rights.
We need to remember that if we get confined to a
framework that is based on a scarcity model we will be
confined in what we are doing.
It is clear that women activists and advocates need to
re-position ourselves to push back against the walls that are
closing in on women’s rights. We need to push back on the
investment language and on the maternal health language.
Women’s health is not about economic development, it is about
rights – all our rights, throughout all our life – not only when
those rights serve to
protect the products
of our womb.
We need to
reclaim the agenda
from the position of
strength, to reclaim
our own voice as a
voice of experience
– and we need to
do so visibly. The community conversation – women’s lived
realities, as echoed and re-echoed so often in the consultations
mentioned above – need to be as much a part of this, as the
political mobilisation of women.
Why are we in this situation where we’re begging for
resources; we’re presenting this evidence that we have a
problem? We are half the human race! Isn’t that enough?
We need to expand the agenda and bring the content
of human rights into the agenda, reclaiming the multiple
dimensions of rights, so that when we are talking about the
right to health, we are not just talking about access to services;
when we are talking about sexual and reproductive rights, we
are not just talking about maternal and child health; when
we are talking about the right to life, we are not pitting our
own life against that of our child, partner, sister or friend. By
expanding the conversation on rights, and populating it with
our experiences and realities, we can claim multiple spaces as
legitimate spaces for these conversations – the World Health
Assembly; the International Labour Organization; and Rio+ 20
on sustainable development.
And we need to demand accountability to look at where
resources are going. Why has Round 11 failed? What are
national governments doing with their money? Who is holding
them to account?
We should never be the victim. We are there – we can
stand our own ground – we don’t need to ask to be
listened to.
…these realities are
exacerbated when coupled
with other factors of
marginalisation, such as
poverty, a positive
sero-status, disability, or
minority sexuality…
45
ALQ June 2012 – Special edition incorporating MujereS adelante
Achieving women’s health and rights in times of economic austerity
Mujeres Adelante 46Achieving women’s health and rights in times of economic austerity
Special edition incorporating MujereS adelante – June 2012 ALQ
FOOTNOTES:
1. All quotes are from participants in the CSW 2012 side event
‘Achieving Women’s Health in Times of Economic Austerity:
Interrogating the implications of Round 11 cancellation of the Global
Fund to Fight AIDS, Tuberculosis and Malaria, and the budget cuts to
PEPFAR’, hosted by AIDS Legal Network, ATHENA, Fundación para
Estudio y Investigación de la Mujer (FEIM), the International AIDS
Women’s Caucus (IAWC), and the World YWCA.
2. Consultation led by ATHENA Network. [www.womenandaids.
net/CMSPages/GetFile.aspx?guid=4b2bf719-a503-416f-bfd9-
d44d8e5308ee]
3. Consultation led by FEIM. [www.womenandaids.net/CMSPages/
GetFile.aspx?guid=82f90464-a0c8-4361-be83-beb33c6d422d]
4. Consultation led by AIDS Legal Network (ALN). [www.
womenandaids.net/CMSPages/GetFile.aspx?guid=4efe8aa8-b916-
442d-918f-21271b8542e3]
5. UNAIDS. 2010. Global Report: UNAIDS Report on the Global AIDS
Epidemic.
Women’s rights activists, participants in the meeting, drafted the following statement
calling upon governments, UN agencies, and civil society at all levels to:
• Realise in full women’s and girls’ entitlement to comprehensive healthcare, including sexual and reproductive
healthcare during all stages of their lives and regardless of HIV status, sexuality, and gender identity
• Provide space in all decision-making fora for women living with and affected by HIV, and women living in
contexts of marginalisation, to give voice to their experiences and realities and to highlight the complexities
and challenges of meeting their health entitlements; and, ensure their meaningful involvement in identifying
and implementing solutions to address these
• Recognise the public health imperative of ensuring women’s and girls’ human rights are realised in all aspects
of their lives
• Expand and secure an even distribution of available resources across the whole spectrum of healthcare to
ensure that adequate funding is available both within and beyond maternal healthcare so that women and
girls can claim their right to health; in so doing, guarantee adequate funding at the country level for all four
prongs of the Global Plan to End Vertical Transmission and Keep Mothers Alive
• Ensure adequate budget allocations and accountability mechanisms for the translation of political
commitments to protect and advance women’s and girls’ rights in the context of HIV into programmes and
interventions which have the potential to transform the lived realities of women and girls
• Prioritise inter- and multi-sectoral dialogue and engagement between all relevant stakeholders, especially
women living with HIV, to assure that women’s and girls’ rights are promoted, protected and comprehensively
resourced during times of financial crisis
Luisa Orza is a women’s rights and HIV activist.
For more information and/or comments,
please contact her on luisa.orza@gmail.com.
Mujeres Adelante 47
ALQ June 2012 – Special edition incorporating MujereS adelante
Intersecting factors must be addressed…
Karen Stefiszyn
It is well-evidenced that gender inequality
greatly impacts on the extent to which women
are in the position to make informed sexual
and reproductive choices; to access healthcare
services; and to ultimately benefit from available
HIV information, prevention, treatment, care and
support programmes and interventions. Moreover,
the same socio-cultural and religious values and
gender norms, which increase women’s risks and
vulnerabilities to HIV, also frequently act as barriers to
their ability to access and benefit from services. Thus,
a vicious cycle is created whereby women’s inability
to achieve sexual and reproductive health and rights
increases their susceptibility to HIV acquisition, which
in turn exacerbates barriers to achieving sexual and
reproductive health and rights.
The overarching goal of the Protocol to the African
Charter on Human and Peoples’ Rights on the Rights
of Women in Africa (African Women’s Protocol)
is to bring about gender equality in Africa, the converse of
which is fuelling the spread of HIV on the continent. Women’s
human rights in Africa are enumerated in the Protocol with
corresponding and comprehensive measures to be taken by
states in order to promote, protect, and fulfil these rights. It
addresses many of the root causes of the disproportionate
spread of HIV amongst young women in Africa, such as sexual
violence and early marriage, as well as factors that exacerbate
the effects of HIV infection on the enjoyment of human rights,
such as the denial of inheritance rights.
Health and reproductive rights are provided for in Article 14
of the African Women’s Protocol, including women’s rights
to inter alia: control their fertility; choose any method of
contraception; decide whether to have children, the number
of children and their spacing; and to receive family planning
education. The African Women’s Protocol is the first binding
international human rights treaty to guarantee the right to
abortion under qualified circumstances, as well as the right to be
protected from HIV infection, thus offering greater protection
for the reproductive rights of women, than any other legally
binding international human rights instrument. The provisions
explicitly relating to HIV are grounded in the African Women’s
Protocol reiterate at least two important points: that HIV
is a human rights issue; and that HIV has a disproportionate
impact on African women and girls. Also the inclusion of rights
relating to HIV explicitly under health and reproductive rights
confirms that challenges to women’s reproductive health are
compounded in the context of the HIV pandemic.
Intersecting factors must be addressed…
Sexual and reproductive health and rights, HIV and the African Women’s Protocol
Mujeres Adelante 48Intersecting factors must be addressed…
Special edition incorporating MujereS adelante – June 2012 ALQ
Along with the provisions in international human rights law
specific to reproductive health rights, numerous other human
rights principles, enshrined in the African Women’s Protocol
and other defining international human rights instruments, are
applicable to the promotion and protection of positive women’s
sexual and reproductive health rights. These provisions include,
but are not limited to: the right to equality and to be free from all
forms of discrimination; rights relating to individual freedom,
self-determination
and autonomy; rights
regarding survival,
liberty, dignity and
security; rights
regarding family and
private life; rights
to information and
education; and the
right to the highest attainable standard of health. Violations of
women’s reproductive health and rights are cross-cutting and
inhibit the enjoyment of numerous other rights. Women living
with HIV have the same rights concerning their reproductive
health as other women, but they also have needs and concerns
that are unique and may be confronted with violations
of their rights on the basis of their HIV status. These are
elaborated below.
Pregnancy and discrimination
The right to health is to be exercised without distinction
of any kind, such as race, ethnic group, colour, sex, language,
religion, political or other opinion, national and social origin,
wealth, birth or other status.1 States that discriminate against
women living with HIV by failing to protect, promote, and
fulfil their right to the highest attainable status of health, are
doing so not only on the basis of sex, but also on the basis of
‘other status’, which the UN Commission on Human Rights
has determined to apply to health status, including HIV.2
A considerable number of healthcare practitioners lack
sufficient knowledge on HIV and human rights, and on the
rights of women living with HIV in particular, resulting in
discrimination and stigmatisation in healthcare settings,
including obstetrical and gynaecological care.3 However, States
have a responsibility to ensure that health facilities, goods and
services, including the underlying determinants of health, are
accessible to all, especially the most vulnerable or marginalised
sections of the population, without discrimination.4
Individuals, including health professionals, tend to
stigmatise women living with HIV, in particular those seeking
services related to reproductive decision making. A study in
Zimbabwe, for example, revealed negative experiences by
women living with HIV while seeking reproductive health
services.5 Some of the participants in the study admitted to
non-disclosure of their HIV status to health workers in order
to avoid discrimination.6 One participant had not received
proper care when delivering her child, because the healthcare
workers feared HIV transmission.7 Others reported being
scolded by health workers for getting pregnant.8 According to
another report, a woman in Namibia was ignored by healthcare
workers when seeking information on HIV and pregnancy
…offering greater protection
for the reproductive rights
of women…
Mujeres Adelante
and was told ‘you are
HIV-positive and you
are pregnant, your baby
already die [sic]’.9 In
an environment where
HIV-related stigma
manifests, women living
with HIV can be
deterred from seeking
servicesand consequently endanger their own
health and, if pregnant, the health of their
unborn children.
Discrimination against pregnant women, particularly
pregnant women living with HIV, persists despite international
human rights obligations to prohibit discrimination against
women in every area. Violations of women’s sexual and
reproductive health and rights, which are discriminatory and
are based on their HIV status, have the effect of impairing
and nullifying the recognition, enjoyment and exercise of
their rights as envisaged by CEDAW and the African Women’s
Protocol. Further, the same violations impede women’s access
to and benefit from HIV prevention, care, treatment and support
information and services, reducing their ability to protect
themselves, their partners and their actual or future infants
from HIV acquisition.
The right to control fertility
The right to control one’s fertility means the right of a
woman to reproductive autonomy, including her right to decide
freely and responsibly if, when, and how often to reproduce.10
Violations of reproductive autonomy negatively affect women’s
empowerment, of which being in a position to make free
and informed decisions is an integral component. There are
numerous impediments in Africa to the realisation of this right.
Social norms and cultural values place significant pressure
on women to bear children, and women’s value to family and
society is often determined by their fertility. Many women
desire children for a variety of other personal reasons and cannot
imagine a life where such a desire is left unfulfilled. Other
women do not want
to have children at all,
or may not want to
have more children,
yet may be unable
to avoid pregnancy,
due to an inability to
negotiate safer sex,
or due to a lack of
access to adequate
information provided
by well-resourced
and informed family
planning services. When confronted with an unplanned
and unwanted pregnancy, many women are unable to safely
terminate the pregnancy, due to prohibitive abortion laws in
their country.
The right to control one’s fertility exists regardless of
HIV status. More than 80% of all women living with HIV and
…violations of women’s
sexual and reproductive
health and rights … have
the effect of impairing and
nullifying the recognition,
enjoyment and exercise of
their rights…
…violations of women’s
reproductive health and
rights are cross-cutting and
inhibit the enjoyment of
numerous other rights…
49
ALQ June 2012 – Special edition incorporating MujereS adelante
Intersecting factors must be addressed…
Mujeres Adelante 50Intersecting factors must be addressed…
Special edition incorporating MujereS adelante – June 2012 ALQ
their partners are of reproductive age.11 An enabling environment
for informed choices is required in order for women living with
HIV to choose whether to have children, how many, and when.
However, HIV gives rise to a number of complicated issues in
different areas. Despite increased availability of state-provided
treatment, the health and well-being of women living with HIV
can be threatened during pregnancy and labour. There is also
a risk of passing HIV to the infant via perinatal transmission.
In addition, women living with HIV face strong pressures from
community members and healthcare providers not to become
pregnant and have children, either because of the risk of
perinatal HIV transmission or out of concern for the welfare
of children raised by parents who may die prematurely of
AIDS-related illnesses. A considerable number of service
providers are also of the opinion that pregnancy ought to be
prevented at all costs in women living with HIV.12
On the other hand, many women living with HIV still
maintain their desire to have children, irrespective of their
HIV status.13 A study in South Africa found that personal desires
and family and societal expectations frequently outweighed the
influence of HIV status in determining whether or not to have
children.14 The same study cited hope, happiness and a reason
for living as factors influencing the desire for children amongst
women and men living with HIV.15 However, concerns were
noted by the study participants about childbearing, including
the health of the infant, the risk of deteriorating health
during pregnancy, fears of transmitting HIV to an uninfected
partner while trying to conceive, and the possibility of dying
and condemning a child to orphanhood.16 Along with the
importance assigned to childbearing in Sub-Saharan Africa and
the accompanying social pressure for women to bear children,
as well as personal desires for motherhood, women living with
HIV are confronted with unique challenges that influence their
reproductive decisions.
These scenarios create a conflict for women living with HIV
and impact on their right to make free and informed choices,
irrespective of whether it relates to a desire to reproduce or to
the choice to inhibit reproduction. Either way, the notion of
choice is an imperative factor in the right of women to make
decisions concerning fertility free of coercion.
Control over one’s body and fertility is more easily
exercised in situations where one is informed and empowered
to make relevant decisions, particularly when those decisions
comprise the additional considerations brought about by living
with HIV. In Africa, however, many women live in a context of
poverty and disempowerment – often entailing lack of access
to information – which
exacerbates inherently
unequal power relations
between themselves and
those encountered within
the healthcare system.
This may leave women
susceptible to directive
counselling or outright
coercion, especially
where decision-making
is already compromised
…violations of
reproductive autonomy
negatively affect women’s
empowerment, of which
being in a position to
make free and informed
decisions is an integral
component…
Mujeres Adelante 51
ALQ June 2012 – Special edition incorporating MujereS adelante
Intersecting factors must be addressed…
by familial, societal and/or internalised HIV-related stigma
and/or a lack of accurate information regarding safe pregnancy
and childbirth for women living with HIV. Healthcare workers,
untrained in human rights – and often also overstretched,
under-resourced, and lacking accurate, up-to-date information
on HIV care and treatment – may act on their own judgement
of ‘what is best’ both for the woman and for the unborn child,
and in doing so, potentially violate women’s rights. A human
rights-based approach to sexual and reproductive health and
HIV, which would require legislation, policies, and guidelines
based on internationally accepted human rights norms to be
enacted and implemented, is necessary to protect the rights of
women living with HIV to control their fertility.
Family planning and access to contraceptive services
The 2011 Millennium Development Goals Report indicates
that in Sub-Saharan Africa, one in four married women has an
unmet need for family planning based on the latest available
data from 2008.17 The right to choose whether and when to
have a child lies at the core of reproductive rights. The right
to family planning is
enshrined explicitly at
the African regional
level in the Women’s
Protocol.18 In order
for women living with
HIV to be in a position
to make informed
decisions regarding
childbearing, women must be informed about and given
access to safe, effective, affordable, and acceptable methods of
family planning of their choice along with other reproductive
healthcare services, and the means to utilise such facilities.19
There is a direct relationship between a woman’s fertility
rights and the contraceptive services available. While the World
Health Organisation (WHO) has confirmed the effectiveness
and safety of the use of contraceptives by women living
with HIV, limited and/or denied access to safe and effective
contraceptive services severely compromises the rights of
women living with HIV. A study conducted in Botswana, for
example, indicates that women’s desire to control their fertility
is hampered by the limitation of contraceptive options they
face.20 In Zambia, women living with HIV reported difficulty
in asking for, and accessing forms of contraceptives other than
condoms, and one woman reported being told that
…requesting contraceptives is a confirmation that you
are not using condoms, exposing others to risk and
exposing yourself to re-infection and more infections.21
Even where contraceptives are available, women often
do not possess adequate information to make an appropriate
choice.22 There is a need for explicit policies that recognise
the right to reproductive choice for individuals living with
HIV, including improved access to contraception and other
reproductive healthcare services.
The difficulties women face in negotiating the circumstances
of sex, including condom use, are widely recognised and
understood. To address these challenges, increasing access to
…a human rights-based
approach … is necessary
to protect the rights of
women living with HIV
to control their fertility…
Mujeres Adelante 52Intersecting factors must be addressed…
Special edition incorporating MujereS adelante – June 2012 ALQ
and quality of family
planning services must
be linked with ongoing
initiatives towards gender
equality, particularly
through transforming
gender norms, education,
economic empowerment,
and addressing all forms
of violence against
women. Where gender inequalities prevail, women are least in
a position to decide freely on whether or not to bear children
regardless of the availability and quality of services in place.
Access to legal abortion
Restrictions on abortion have devastating effects on
women’s health and rights. In Africa, the risk of dying
following unsafe abortion is the highest worldwide, where 14%
of maternal deaths are due to unsafe abortions.23 A women’s
rights NGO in Malawi reported that unsafe abortions contribute
to about 30% of Malawi’s maternal mortality rates.24 Many
countries in Africa have restrictive abortion laws which violate
women’s rights to reproductive autonomy and fail to take into
account the reality of women’s lives. Prohibitive abortion laws
not only affect women’s health and well-being; but the denial
of abortion services also violates the right to equality and
non-discrimination.25
These laws infringe women’s dignity and autonomy by
severely restricting decision-making by women in respect
of their sexual and reproductive health. Moreover, such
laws consistently generate poor physical health outcomes,
resulting in deaths that could have been prevented,
morbidity and ill-health, as well as negative mental
health outcomes, not least because affected women risk
being thrust into the criminal justice system. Creation or
maintenance of criminal laws with respect to abortion
may amount to violations of the obligations of States to
respect, protect and fulfil the right to health.26
WHO defines ‘unplanned pregnancy’ as a pregnancy that is
not expected, and ‘unwanted pregnancy’ as a pregnancy that for
a variety of often overlapping reasons is both unexpected and
undesired.27 This definition indicates that a pregnant woman
decides of her own free will whether or not that pregnancy is
undesired. Considering that 38% of pregnancies are unplanned,
impediments to reproductive choice must be considered.28
Many pregnancies, for example, are the result of sexual
violence and rape, including within marriage, which in Malawi
and Botswana – among many other countries in Africa – can
occur with impunity in the absence of legislation addressing
marital rape. In many countries in Sub-Saharan Africa, children
who are forced into early marriage give birth to children.
Other unintended pregnancies result from ignorance as a result
of limited and/or denied access to sex education including
information on family planning and contraceptives. Many
women cannot negotiate safer sex in their relationships and/or
do not have consistent access to contraceptive methods for a
variety of reasons, including in situations where reproductive
…women must be
informed about and
given access to safe,
effective, affordable, and
acceptable methods of
family planning of
their choice…
Mujeres Adelante 53
ALQ June 2012 – Special edition incorporating MujereS adelante
Intersecting factors must be addressed…
health services are only available in centres beyond the reach
of rural women. Women living with HIV can have serious
negative health consequences from unplanned pregnancies
if, for example, they do not have access to relevant treatment,
information and support services, or are not in an optimum
state of health pre-conception. In addition, research indicates
that women living with HIV are among women who choose to
terminate pregnancies including in countries with numerous
legal restrictions on abortion.29 In these circumstances,
terminations run a high risk of being carried out by persons
lacking the necessary skills and in circumstances that lack
minimal medical standards. Complications from unsafe
abortion have been cited as one of the major reproductive
health problems facing the sub-region.30
UNAIDS recommends that women living with HIV should
have a right to choose whether to terminate a pregnancy upon
learning of their
HIV status; and
that they should be
supported to do so
without judgment.31
Some legal experts
believe that it is
unnecessary to
specifically mention
HIV as one of the
grounds to terminate
a pregnancy, because a
positive HIV diagnosis
should entitle a woman to access a legal abortion where
abortion is permitted to protect a woman’s health or life.32
This recommendation by UNAIDS should, however, not be
used to coerce or pressure women living with HIV to have an
abortion. The International Community of Women Living with
HIV (ICW) has reported that their members have sometimes
felt that healthcare workers present abortion as the only option
for pregnant women living with HIV, and that they have felt
coerced into having an abortion.33
Forced or coerced sterilisation
Research carried out by ICW and others documented
40 instances of coerced or forced sterilisation in Namibia,
whereby informed consent for the procedure was not adequately
obtained. The research found that
…consent was obtained under duress, consent was
invalid as the women were not informed of the contents
of the documents they signed, medical personnel failed
to provide full and accurate information regarding the
sterilisation procedure.34
Women were also asked to provide signed consent for
sterilisation in order to access other services including
abortion and caesarean and to receive assistance with
childbirth.35 Similar cases have been documented in South
Africa and Zambia.36 Three Namibian women are currently
seeking redress in the High Court. If local mechanisms
are exhausted without success, then these cases should be
brought before the African Commission on Human and
…where gender inequalities
prevail, women are least in
a position to decide freely
on whether or not to bear
children regardless of the
availability and quality of
services in place…
Mujeres Adelante 54Intersecting factors must be addressed…
Special edition incorporating MujereS adelante – June 2012 ALQ
Peoples’ Rights, the African Court, or
before the CEDAW Committee.
Forced or coerced sterilisation or
abortion adversely affects women’s physical
and mental health, and infringes upon the
right of women to control their fertility and
to decide on the number and spacing of their
children.37 Forced or coerced sterilisation
violates other human rights as well, including
the right to be free from cruel, inhuman and
degrading treatment; the right to liberty and security of person,
the right to bodily integrity; and the right to equality and to
be free from discrimination. The International Federation
of Gynaecology and Obstetrics (FIGO), in outlining ethical
considerations in sterilisation, stated that no incentives should
be given, or coercion applied, to promote or discourage any
particular decision regarding sterilisation.
Withholding other medical care by linking
it to sterilisation is unacceptable.38 As
sterilisation is permanent, the decision
made by the woman should be based on
voluntary informed choice and should not
be made under stress or any kind of duress.
Restrictions on women’s reproductive
choice are bound to further fuel
stigma and discrimination against
women living with HIV, subjecting
them to double discrimination. Forced
sterilisation, for example, will also lay
an additional favourable ground for
further discrimination in societies which
emphasise fertility and childbearing as
a defining factor in women’s successful
contribution to the extended family and
society as a whole.
Conclusi on
Barriers to controlling one’s fertility,
unmet family planning needs and lack of
access to contraceptive services, restrictive abortion laws, and
coerced or forced sterilisation, are all issues confronted by
women living with HIV, which threaten their rights guaranteed
under the African Women’s Rights Protocol. National legal
frameworks must be strengthened to address the HIV-related
discrimination, which fuels violations of these enshrined rights.
At the same time, other non-legal measures,
such as awareness-raising and education
campaigns, must be undertaken towards the
same end.
In order to create an enabling
environment for women to exercise
their right to control their fertility,
intersecting factors, such as inequality
and violence against women,
must be addressed through law and policy
and accompanying implementation
mechanisms with dedicated adequate
financial resources. The 23 African states
…considering that 38%
of pregnancies are
unplanned, impediments to
reproductive choice must be
considered…
…restrictions on
women’s reproductive
choice are bound to further
fuel stigma and
discrimination against
women living with HIV,
subjecting them to
double discrimination…
Mujeres Adelante 55
ALQ June 2012 – Special edition incorporating MujereS adelante
Intersecting factors must be addressed…
that have not yet
ratified the African
Women’s Protocol
should be encouraged
to do so in order
for them to also be
held accountable
to commitments to
promote, protect, and
fulfil the rights of
women living with HIV, including their health and sexual and
reproductive rights.
FOOTNOTES:
1. Article 2 of the African Charter on Human and People’s Rights.
2. Office of the United Nations High Commissioner for Human Rights,
2003.
3. Resolution adopted by the General Assembly 60/262 Political
Declaration on HIV/AIDS, 2006.
4. CESCR General Comment No 14 para12(b).
5. Feldman R & Maposhere, C. 2003. ‘Safer sex and reproductive choice:
Findings from ‘’Positive women: Voices and choices’ in Zimbabwe’.
In: Reproductive Health Matters, 11(22), p162.
6. Ibid, p168.
7. Ibid.
8. Ibid.
9. ICW. 2009. The forced and coerced sterilisation of HIV positive
women in Namibia. International Community of Women Living with
HIV. [www.icw.org/files/The%20forced%20and%20coerced%20
sterilization%20of%20HIV%20positive%20women%20in%20
Namibia%2009.pdf]
10. See also para96 of the Beijing Platform, para7.3 of the Cairo
Programme and Article 16(1)(e) of CEDAW.
11. Delvaux, T. & Nostlinger, C. 2007. ‘Reproductive Choice for Women
and Men Living with HIV: Contraception, abortion and fertility’. In:
Reproductive Health Matters, 15(29 Supplement), pp46-47.
12. Center for Reproductive Rights & Federation of Women Lawyers
Kenya. 2008. At Risk: Rights Violations of HIV Positive Women
in Kenya Health Facilities. p44. [http://reproductiverights.org/en/
document/at-risk-rights-violations-of-hiv-positive-women-in-kenyanhealth-
facilities]
13. Harries, J. et al. 2007. ‘Policy maker and health care provider
perspectives on reproductive decision-making amongst HIV-infected
individuals in South Africa’. In: 7 BMC Public Health 282.
14. Cooper, D. et al. 2007. ‘“Life is still going on”: Reproductive
intentions among HIV-positive women and men in South Africa’. In:
Social Science and Medicine, 65, p274.
15. Ibid, p277.
16. Ibid, p279.
17. The Millennium Development Goals Report 2011. [www.un.org/
millenniumgoals/11_MDG%20 Report_EN.pdf]
18. Article 14(1)(b) of the African Women’s Protocol.
19. Cairo Programme of Action (note 5 above) para2.
20. Ipas. 2006. ‘There’s nothing you could do if your rights were being
violated’: Monitoring Millennium Development Goals in relation to
HIV-positive women’s rights’. [www.icw.org/files/ Ipas%20MDG %20
monitoring%20tool%20report %207-24-06.pdf]
21. Southern African Litigation Centre. 2009. ‘Brief summary of sexual
and reproductive health and rights concerns of women living with HIV
in Zambia’.
22. Ibid.
23. UN Women. 2011-2012 Progress of the World’s Women: In Pursuit of
Justice. New York, p42.
24. A list of critical issues to the 6th periodic report of Malawi on
CEDAW. Identified by WLSA Malawi. Prepared and submitted by S
White & T Kachika. January 26, 2009, p8.
25. CEDAW General Recommendation 24, para14.
26. Grover, A. 2011. Interim report of the Special Rapporteur on the right
of everyone to the enjoyment of the highest attainable standard of
physical and mental health, UN General Assembly, A/66/254, para21.
27. WHO. 2006. Unsafe Abortion: The Preventable Pandemic. Geneva:
WHO.
28. Alan Guttmacher Institute, This report indicates that of the estimated
210 million pregnancies that occur throughout the world each year,
38% are unplanned. In developing countries, of the 182 million
pregnancies occurring each year, an estimated 36% are unplanned and
20% end in abortion.
29. See for example De Bruyn, M. 2005. HIV/AIDS and Reproductive
Health: Sensitive and Neglected Issues. A Review of the Literature.
Recommendations for Action. Chapel Hill, NC: Ipas. [www.ipas.org/
Publications/asset_upload_file268_2956.pdf]. The same findings were
made by WHO ‘Women and HIV and mother-to-child transmission’
Fact sheet 10. [www.who.int/health-service-delivery/HIV_aids/
English/fact-sheet-10/index/html].
30. Sexual and Reproductive Health Strategy for the SADC Region 2006-
2015, September 2006. The aim of the strategy is to provide a policy
framework and guidelines to accelerate the attainment of healthy
sexual and reproductive life for all SADC citizens.
31. Goodwin, J. 2004. Recommendations on integrating human rights into
HIV/AIDS responses in Asia-Pacific region. [www.un.or.th/ohchr/
issues/hivaids/EpertMeeting_2004/recommendations.Pdf]
32. de Bruyn, 2005, p43.
33. ICW, 2008.
34. ICW, ‘Overview of ICW’s work to end the forced and coerced’ [sic].
[www.icw.org/node/381]
35. Ibid.
36. IRIN news, ‘More sterilisations of HIV-positive women uncovered’ 30
August 2010, [www.irinnews.org/ report.aspx?reportid=90337]
37. CEDAW General Recommendation 19 para22.
38. FIGO Committee for the Study of Ethical Aspects of Human
Reproduction and Women’s Health. 2006. ‘Ethical issues in obstetrics
and gynecology, 2006, p74.
…held accountable to
commitments to promote,
protect, and fulfil the rights
of women living with HIV,
including their health and
sexual and reproductive
rights…
Karen Stefiszyn is the Coordinator of the Gender Unit at
the Centre for Human Rights at the University of Pretoria.
For more information and/or comments, please contact
her at Karen.Stefiszyn@up.ac.za.
Mujeres Adelante 56TAKING A
STAND
Special edition incorporating MujereS adelante – June 2012 ALQ
Supported by the
Oxfam HIV and AIDS Programme (South Africa)
www.aln.org.za
www.ATHENAnetwork.org
Editors: Johanna Kehler (jkaln@mweb.co.za), E. Tyler Crone (tyler.crone@gmail.com) • Photography : Johanna Kehler • DTP Design: Melissa Smith (melissas1@telkomsa.net) • Printing: FA Print
Tel: +27 21 447 8435 • Fax: +27 21 447 9946 • E-mail: alncpt@aln.org.za • Website: www.aln.org.za
Taking a stand…