Project Description

In Focus…
Is ‘stepping up the pace’ to non-discrimination enough?
What’s inside:
Special report:
Become our own
agents of change
Women’s voices…
Positive change
is limitless
Women’s
realities…
Challenged
to make real
progress
In Focus…
From
criminalisation to
agency
News from the
‘margins’…
Queer resistance
Regional voices…
Conference
expectations
In our opinion…
Understanding
the community
The Melbourne Declaration for
AIDS 2014 was released several
weeks before the 20th annual
international AIDS Conference.
The document is patterned on
previous manifestos produced by
conferences in 2000 in Durban and
2010 in Vienna, which each tackled
particular pressing problems facing
the community of HIV and AIDS
researchers, clinicians, and people
living with and affected by HIV.
In Durban, the spotlight was South
Africa’s denialist HIV policy
and lack of access to antiretroviral
treatment; in Vienna it was on the
issue of criminalisation of HIV and
safe and accessible treatment for
intravenous drug users and
sex workers.
The Melbourne Declaration
shows that most of these issues
remain important problems for the
international HIV community, four
years later:
We affirm that all women,
men, transgender and intersex
adults and children are entitled
to equal rights and to equal
access to HIV prevention, care
and treatment information and
services. The promotion of
gender equity is essential to
HIV responses that truly meet
the needs of those most affected.
Additionally, people who sell or
who have sold sex, and people
who use, or who have used
illicit drugs are entitled to the
same rights as everyone else,
including non-discrimination
and confidentiality in access to
HIV care and treatment services.
Since 2010, when the Vienna
Conference adopted the slogan
Mujeres Adelante Sunday•20 July 2014
Daily newsletter on women’s rights and HIV – Melbourne 2014
Kate Griffiths-Dingani
We, the signatories and endorsers of this Declaration, affirm that non-discrimination is fundamental to an evidence-based,
rights-based and gender transformative response to HIV and effective public health programmes. [Melbourne Declaration 2014]
2 Sunday • 20 July 2014
‘rights here, rights now’ a human rightsbased
framework has taken an increasingly
prominent place in IAS conference themes
and documents. It is clear that the longstanding
advocacy for women living
with HIV has helped to push ‘gender
equity’, criminalisation and the rights of
transgender people, drug users and sex
workers into the mainstream agenda of
IAS and AIDS 2014. But notably, while
the Vienna Declaration commitment
to ‘rights here, rights now’ promised
an increased focus on the global status
of women; the Melbourne declaration
mentions women specifically only once.
Instead of centering women’s rights as
the basis for increased access and rights,
‘Stepping UP’ in Melbourne is framed as
a matter of advancing non-discrimination
for seemingly discrete categories of the
most affected, conveniently ignoring
that women as a marginalised global
majority is a category that cuts across
criminalised and discriminated groups of
diverse lesbian, gay, bisexual, transgender,
queer, questioning and intersex people,
sex workers and injecting drug users.
Without women at the centre, are we
really stepping up the pace on rights and
on treatment access? Or are we moving
backward? Are women and girls getting
left behind in Melbourne?
‘Gender equity’ or ‘gender
invisibility’…
The Melbourne Declaration points to
the potential health consequences of over
80 countries with laws that criminalise
lesbian, gay, bisexual, transgender, and
intersex people, and demands that such
laws be repealed, and be given no platform
at International AIDS Society conferences
and events. Likewise, the declaration
targets agencies that refuse funding to
agencies that work with and treat sex
workers and drug users.
At the same time that new laws
criminalising lesbian, gay, bisexual,
transgender and intersex people have
gone on the books in Uganda and several
other countries, many more countries
have dusted off and begun enforcing
colonial-era anti-sodomy laws for much
the same purpose. Meanwhile, Uganda’s
‘anti-pornography’ law, passed during the same parliamentary
session as its anti-homosexuality bill, has gotten less attention in
the international media, and goes unmentioned in the Melbourne
Declaration, though its impact on the HIV epidemic may be even
more dire. The law interprets pornography as:
…any representation through publication, exhibition,
cinematography, indecent show, information technology or by
whatever means, of a person engaged in real or stimulated explicit
sexual activities or any representation of the sexual parts of a
person for primary sexual excitement.
As a result, it has become a legal declaration of war against
women, legitimising the public sexual assault of women, as they
go about their daily business, and empowering any man to ‘correct’
any women he may find to be ‘indecently’ dressed or dressed for
‘primary sexual excitement’. Reports of such assaults are numerous
and growing. Such extreme legitimation of gender-based sexual
violence cannot only by itself become a dangerous vector of HIV
transmission, but will limit women’s access to healthcare, and other
necessities of life, by limiting their daily movements and normal
social interaction.
Rollback on reproductive rights
While lesbian, gay, bisexual, transgender, queer, questioning and
intersex people’s daily existence is being increasingly criminalised
in many countries, particularly in sub-Saharan Africa and south Asia,
the rollback of women’s reproductive rights is a global phenomenon.
Though recent Supreme Court rulings have put the spotlight on the
erosion of reproductive rights in the USA in particular, the push
back against women’s health and autonomy goes beyond the right to
contraception and abortion, and includes the right to access maternal
healthcare and retain bodily autonomy against forced sterilisation.
Court rulings, new laws, inadequate austerity infrastructure,
and denial of care to women in many places around the world, can
only have a negative impact on recent gains in responding to HIV
when women are denied access to reproductive healthcare; when
women, and children are denied access to HIV testing and treatment.
Amnesty International has called on five countries, including the
United States to address the deteriorating state of their national
maternal health.
It is encouraging that the Melbourne Declaration calls for the
‘exclusion’ from donor funding of agencies and organisations that
discriminate on the basis of sexuality and gender; but does this include
organisations that limit women’s reproductive rights and autonomy?
Criminalisation circumscribed…
Careful reading makes it clear that the ‘criminalisation’
referred to in the Melbourne declaration refers specifically to
the ‘criminalisation’ of lesbian, gay, bisexual, transgender,
queer, questioning and intersex peoples’ lives, and calls for the
decriminalisation of drug use and sex work, echoing 2010’s Vienna
document. For all people living with HIV, criminalisation of HIV
exposure, transmission and non-disclosure remains an important
barrier to care and driver of the epidemic; and for women, a law and
…without
women at the
centre, are we
really stepping
up the pace
on rights and
on treatment
access?…
…does this
include
organisations
that limit
women’s
reproductive
rights and
autonomy?…
…the rollback
of women’s
reproductive
rights is a global
phenomenon…
Sunday • 20 July 2014 3
precedents that criminalise HIV exposure,
transmission and non-disclosure can have
an added negative impact.
For women living with HIV,
criminalisation means increased
vulnerability to domestic abuse,
disincentive to treatment, disincentive
to seek prenatal care, restricted access to
reproductive healthcare, and increased
likelihood of prosecution. It also puts
children at greater risk of perinatal
transmission and decreases access to care.
Awareness of the intersections of
gender, socio-economic status and
the criminalisation of HIV exposure,
transmission and non-disclosure is
gaining ground in the international HIV
community, but the concern remains
side-lined in the Melbourne Declaration.
Beyond non-discrimination:
Research for women’s health
and rights
The HIV epidemic is taking place in a
global landscape of increasing austerity
in healthcare and a world-wide assault on
women’s economic status, legal rights and access. To go beyond
‘tolerance’ and ‘non-discrimination’ on the basis of sexuality and
gender identity, more than exclusion of discriminatory providers is
required. Instead, investment in research and programmes rooted in
the lived experience of women, and particularly women living with
HIV, can strengthen the social, legal and economic status not only of
women, but of lesbian, gay, bisexual, transgender, queer, questioning
and intersex people (including women), sex workers and people who
use drugs, who still face intolerance, discrimination and increased
criminalisation of their daily lives.
In just one salient example, a debate will take place in this
conference and beyond as to the possibilities of universal PrEP for
men who have sex with men; preliminary research shows PrEP
protects women, too. Where is the scientific and policy debate about
risk factors for women that might justify pre-emptive antiretroviral
treatment?
Stepping up the pace to the right to care – not simply to be free
from discrimination – means putting women at the centre, not on the
side-lines.
Kate is an anthropologist and writer, who lives in Brooklyn, NY,
and frequently works in South Africa.
…the concern
remains
side-lined in
the Melbourne
Declaration…
…more than
exclusion of
discriminatory
providers is
required..
News from the Global Village…
From criminalisation
to agency…
A Women’s Dialogue
Women experience violations of their rights, particularly in the
context of HIV and sexual and reproductive health. These
include limited access to sexual and reproductive health services;
stigma, discrimination, coercion and violence within services;
gender-based and sexual violence at domestic, community and institutional
levels; and denial of agency to make free, informed choices about their
sexual and reproductive lives, including negotiating safer sex and deciding
whether or not to have children.
This interactive dialogue among leading women’s rights advocates and
the audience will focus on strategies to transform women’s criminalisation
into women’s agency, and step up the pace to advance women’s rights in the
context of and the response to HIV. In particular, this session will explore:
• Who is responsible for the various ways in which women are
criminalised and denied agency?
• What works to transform rhetorical commitments into concrete
action for the rights of women in all their diversity? What can be
learned from other movements?
• Regionally and globally, what have we gained, and where are
the gaps, in forging a strong, united advocacy voice for laws,
policies and practices that respect and protect women’s rights?
Moderator: Johanna Kehler – AIDS Legal Network, South Africa
Presenters:
Jennifer Gatsi – Namibian Women’s Health Network
Leigh Ann van der Merwe – S.H.E. Feminist Collective of Transgender
and Intersex Women in Africa
Mabel Bianco – FEIM, Argentina
Come join us and participate in stepping up the pace
on women’s agency…Now More Than Ever
When: Tuesday, 22 July 2014, 13h00 to 14h30
Where: Human Rights Networking Zone
4 Sunday • 20 July 2014
Very often, the voices of those
who really matter are silenced.
Silenced by people speaking on
our behalf; silenced by people
who think our experiences
and views do not matter; and
silenced by people who think our
challenges do not have enough
legitimacy to be part of the
discourse. But more importantly,
the voices that matter the
most, those at the grassroots
level, are silenced when policy
makers develop, implement
and evaluate policies and
programmes without consulting
the very same people who are
meant to benefit.
South Africa subscribes to
a number of human rights
commitments, and locally the Batho
Pele (People First) principles. Not
taking the issue far from home,
the Constitution of our country is
explicit in its commitment to the
full enjoyment of human rights by
all people. At the same time, the
Constitution also commits to the
promotion of traditional and cultural
leadership. Culture and harmful
cultural practices have been cited in
a number of articles on human rights
violations in South Africa. Not
only do harmful cultural practices
undermine gender equality, it also
contributes to the risks of HIV
transmission. Siqwana Ndulo (2013)
makes reference to the disjuncture
between rights (human rights)
committed to at one level, and the
promotion of cultural rights and
leadership, on another.
Post 1994, in a new democratic
state, the dream of a ’free‘ South
Africa is bashed by the disparity
between the political commitment to
health rights and the lived realities
of the people. In 2013, S.H.E.
conducted a small study on cultural
circumcision among transgender
women. The study highlighted,
among others, the challenges and
intersectionalities between cultural
identity, femininity and HIV. A
research participant describes
the realities:
Whether we go for cultural
circumcision or not, we are still
targeted for violence in our
communities. We are called very
bad names when we walk down
the road, and we are rejected
by our families if we do not
undergo cultural circumcision.
The transgender population
is recognised as a ‘most at risk
population’ for contracting and
also transmitting HIV. This is an
established fact documented and
cited in numerous studies on HIV
in key populations. Recent reports
paint a picture of despair with
a meta-analysis indicating that
transgender women are 49% more
likely to contract HIV, than any other key population, including
men who have sex with men and sex workers. With these
figures in mind, we should all be concerned that there is no
particular HIV programme for transgender women in
South Africa.
Pervasive violence, prejudice and discrimination are
recognised barriers for transgender women to access HIV and
other health services. In a recent case, a transgender woman
from East London, South Africa, experienced violence at
a taxi rank while commuting. Incidences like these are not
uncommon and exhibit the risks of transgender women in
accessing health services. This is also disconcerting, because
in a province such as the Eastern Cape people have to travel
long distances to access ARV drugs and other health services.
Community violence is part of the ‘norm’ for transgender
people in East London and elsewhere.
In a focus group discussion for transgender women living
with HIV, participants stressed a need for multi-sectoral
approaches when designing HIV programmes for transgender
women. The same group cited unemployment, poverty and
structural discrimination as factors increasing HIV risks and
vulnerabilities among transgender
women. Asked about their experiences
of rape and sexual violence, almost all
the participants raised their hands. A
participant questioned.
How can we take our ARV drugs
and adhere to them when we don’t
even have food?
There are multiple layers of
complexity and intersecting
oppressions manifesting in the
lives of transgender women. Race,
class and gender are all relevant
factors in determining appropriate,
quality and affordable healthcare
…bashed by
the disparity
between
the political
commitment
to health rights
and the lived
realities of the
people…
Special report:
Become our own agents of change…
Leigh Ann van der Merwe
Sunday • 20 July 2014 5
for transgender populations. South
Africa’s ever maturing democracy
has not transformed enough to
bridge the disparity between the
rich and the poor. Many vulnerable
groups of people in South Africa
remain at high risk of HIV exposure
and transmission, because of the
disproportionate way in which
colonialism and racial segregation
is affecting our existence. Health
policies and affirmative action aimed
at addressing these inequalities
shaped by the past have not
translated into real actions for some
groups in South Africa.
Ethnographic studies must take
into account all the factors that
prevent transgender women from
accessing adequate and quality HIV
and gender affirming care. There
also has to be a recognition that
we are vulnerable and at high risk,
because of the likelihood of being a
sex worker; and that we are driven
into sex work, for the most part,
because of structural inequalities;
and that structural inequalities are
driven by discrimination, stigma
and prejudice; and that ignorance
is one of the root causes of all
discrimination and prejudice.
Nothing about us without us is
a powerful approach in building
the capacity of transgender
women to address the challenges
by ourselves and for ourselves.
There must be efforts to build the
capacity of groups functioning at
the grassroots level, so as to ensure
that programmes and interventions
are informed by and based on
the voices and experiences of
transgender women. We must drive
the advocacy and become our
own agents of change. We need
to own both the challenges and
solutions, because they shape our
daily realities. Finally, there must
be the recognition that we know our
realities, risks and needs best and,
therefore we are best positioned to
champion our own rights, including
the right to comprehensive sexual
and reproductive health.
Leigh Ann is with S.H.E., a Feminist
Collective of Transgender and
Intersex Women of Africa.
…community
violence is part
of the ‘norm’…
…we must
drive the
advocacy and
become our
own agents of
change…
Women living with HIV speak out…
Over the last decade, the interplay between gender-based
violence, sexual and reproductive health and rights and
women’s vulnerability to HIV has become increasingly
recognised by activists from the grassroots up to the global
policy arena. The goals of ending the AIDS epidemic and
zero tolerance to violence against women go hand-in-hand,
and both demand a place in the post-2015 sustainable
development agenda.
In ‘Women living with HIV speak out: Experiences and
actions towards ending violence against women’ women
from the community come together to give an honest account
of the HIV epidemic and violence against women, and provide
strategic recommendations to further action in these areas.
This session will bring together women living with and affected
by HIV from across regions, to discuss how violence against
women can and should be addressed as an essential component
of the HIV response, thus facilitating the achievement of sexual
and reproductive health and rights for all women, particularly
women living with HIV, at every stage of their lives.
Moderator: Ebony Johnson – GCWA Member
Keynote remarks: Rebecca Matheson – GCWA Advisory Group
member, ICW Asia Pacific and Australian woman openly living
with HIV
Panellists:
Annie Banda – Coalition of Women living with HIV/AIDS
in Malawi
Khartini Slamah – Pink Triangle and GCWA Advisory Group
member
Susan Paxton – ICW Asia Pacific
Svetlana Moroz – Union of Women affected by HIV in Ukraine
‘Positive Women’
Luiz Loures – UNAIDS, Deputy Executive Director of
Programmes, UNAIDS
When: Monday, 22 July 2014, 10h00 to 11h30
Where: IAC Melbourne UNAIDS Meeting Room 1
Experiences and actions towards ending violence against women
6 Sunday • 20 July 2014
In my opinion…
Hailed as a milestone in Africa…
adopt legislation that specifically
criminalises homosexuality, for
example in Uganda and Nigeria,
or apply existing criminal law,
such as colonial sodomy laws, to
persecute lesbian, gay, bisexual,
transgender and intersex people
as seen in Zambia and Malawi.
Such legislation also extends
to violating other rights, such
as access to healthcare services
and also impedes public health
strategies, such as HIV prevention.
Uganda’s Anti-Homosexuality Act,
for example, has proven to act as
a barrier for lesbian, gay, bisexual,
transgender and intersex people
to access services because of
fear of prosecution. It also makes
it a criminal offence to provide
services to lesbian, gay, bisexual,
transgender, and intersex people,
therefore healthcare workers are
also less inclined to offer health
services out of fear of prosecution.
Moving forward, the momentum
and vigour which preceded the
adoption of the resolution should
not be diminished. It is imperative
that civil society organisations
now use this resolution as an
advocacy tool to create a legally
enabling environment for lesbian,
gay, bisexual, transgender, and
intersex people on the continent
and work together with the
African Commission to hold states
accountable for their obligations
under the African Charter.
Nelago is with ARASA.
The African Commission on
Human and Peoples’ Rights (the
African Commission) adopted a
Resolution on Protection Against
Violence and Other Human
Rights Violations Against Persons
on The Basis of Their Real or
Imputed Sexual Orientation or
Gender Identity (SOGI) at the
55th Ordinary session of the
Commission held in Luanda,
Angola from 28th April to
12 May 2014.
The African Commission resolution
is part of a steady development of
international and regional human
rights instruments re-affirming
that all human beings enjoy
equal rights, despite their sexual
orientation or gender identity. In
June 2014, the General Assembly
of the Organisation of American
States (OAS) adopted a Resolution
which condemns violence and
discrimination against lesbian,
gay, bisexual, transgender and
intersex people. In May 2014 the
United Nations agencies issued
an interagency statement on
‘Eliminating forced, coercive and
otherwise involuntary sterilisation’,
which supports the rights of
transgender and intersex people
not to be subjected to forced
sterilisation in May 2014.
The adoption of the African
Commission Resolution, which
condemns the increasing violence
and other human rights violations
of persons on the basis of their
sexual orientation or gender
identity, can be considered to be
a significant achievement for SOGI
rights on a continent rife with
increasing incidents of violence,
murder, rape assault, arbitrary
imprisonment and other forms of
persecution against lesbian,
gay, bisexual, transgender and
intersex people.
Despite the fact that the Resolution
is not binding on African states, it
expresses an acknowledgment and
confirmation of Articles 2 and 4 of
the African Charter on Human
Rights that every human being
shall be entitled to the enjoyment
of the rights and freedoms
recognised and guaranteed in the
African Charter, such as sexual
orientation and gender identity,
and that each individual shall be
entitled to respect of their life
and the integrity of their person,
despite their sexual orientation or
gender identity. More specifically,
the resolution re-iterates that the
rights enshrined in the African
Charter extend to lesbian, gay,
bisexual, transgender and intersex
people on the continent. It further
expresses a position on incidences
of violence and human rights
violations and abuses by State and
non-State actors targeting human
rights civil society organisations,
who work on sexual orientation
and gender equality issues.
Although the Resolution can be
hailed as a milestone in Africa,
the legal environment continues
to be riddled with barriers.
States continue to consider and
…the legal
environment
continues to
be riddled
with barriers…
…the momentum
and vigour
which preceded
the adoption of
the resolution
should not be
diminished…
Nelago Amadhila
Sunday • 20 July 2014 7
News from the Global Village…
HIV and Human Rights
in Southern and
East Africa…
Is the law helping or hindering the response to HIV and
AIDS? The AIDS & Rights Alliance for Southern Africa
(ARASA) will be launching the latest report on HIV and
human rights in Southern and East Africa at AIDS 2014.
The report examines the legal and regulatory frameworks for
responding to HIV and AIDS in 18 countries in Southern and East Africa
in order to determine whether:
1. Laws, regulations and policies protect and promote the rights of
all people, including key populations in the context of HIV and
AIDS; and
2. Populations are aware of their rights, are able to access
justice and are able to enforce their rights in the context of
HIV and AIDS.
The report identifies significant national and regional findings and
developments in creating enabling legal and regulatory frameworks for
key and emerging human rights issues; provides country snapshots for
18 countries with information on universal access and human rights, and
makes recommendations for advancing human rights and achieving
universal access (which are based largely on the recommendations of
the Global Commission on HIV and the Law).
The Honourable Michael Kirby, retired Australian High Court
Judge, will deliver the keynote address.
Come join us for the launch of the report!
When: Tuesday 23 July 2013, 15h00 to 15h30
Where: Human Rights Networking Zone
News from the margins…
This session will explore the many ways in which
the increasing attacks on the rights of lesbian,
gay, bisexual, transgender and intersex people
are currently manifesting in various contexts.
Participants and panellists will discuss challenges
defending LGBTI rights, especially in hostile ‘hot
spots’ around the world.
Key topics for the discussion will include:
The provision of sexual and reproductive health services to
LGBTI in these environments
How activists can use courts and human rights mechanisms
to challenge anti-LGBTI laws
How to build international solidarity
Moderator: Patrick Eba – UNAIDS
Panellists:
Maurice Tomlinson – LGBTI Aware Caribbean
Syinat Sultanalieva – Labrys Kyrgyzstan
Mauro Cabral – Global Action for Trans* Equality
Gennady Roshchupkin — Eurasian Coalition on Male Health
Geoffrey Ogwaro – Civil Society Coalition on Human Rights and
Constitutional Law (Uganda)
Come join us in this discussion.
When: Tuesday, 23 July 2014, 11h00 to 12h30
Where: Human Rights Networking Zone
Queer Resistance…
A roundtable discussion on global LGBTI rights
8 Sunday • 20 July 2014
Women in all of our diversity,
especially women living with
HIV, young women, women
who do sex work, women
who use drugs, and women in
same sex relationships, have
and continue to experience
violations of our rights,
particularly in the
context of sexual and
reproductive health.
Despite advances made in
many areas, these continue
to manifest, amongst other things,
as: limited access to sexual and
reproductive health services; stigma,
discrimination, coercion and violence
within services; gender-based and
sexual violence at the domestic,
community and institutional level;
inability to negotiate safer sex,
including condom use, and enact
fertility intentions; and, exclusion
from the spaces where decisions
are made which affect our lives,
especially in relation to our sexuality
and our fertility. From the moment
we are born, until the moment we
die (and especially the closer we
are to either end of the spectrum)
decisions are being made ‘for us’, but
without our informed and meaningful
engagement. These rights violations
are sustained by societal norms
and values, which seek to control
and ‘contain’ women’s sexuality
and limit women’s agency; societal
and political structures, which limit
women’s access to and control of
resources; and, laws and policies
which explicitly criminalise women
on the basis of their sero-status,
sexual practices, work, and lifestyles.
Fundamental to bringing about
a shift from criminalisation to
agency is the need for spaces
in which women in all of our
diversity – and in particular
aspects of our diversity – can
meet, exchange experiences, and
break the silence of isolation
and the belief that ‘bad things
happen’ – to us, as individuals –
because we have done something
wrong, transgressed, been ‘other’.
This transformation begins
with the telling (and hearing)
of stories, making sense of and
finding patterns and meanings
within events that may seem
either chaotic and unconnected,
or deliberate and targeted. The
need to tell stories is universal;
it’s hard-wired into us as human
beings, and everyone has stories to
tell. All we need to release them is
someone to listen.
I will tell you something about
stories … They aren’t just
entertainment… They are all
we have…to fight off illness and death. You don’t have
anything if you don’t have the stories.
[Leslie Marmon Silko, Epigraph to Ceremony, 1977]
The Women’s Networking Zone has its roots at the
15th International AIDS Conference in Durban, in
2000. Here, there were no spaces for women from the
local community to tell their stories amongst the high
level speakers, the global policy makers, the technical
bureaucrats, the programme implementers, the drugs
manufacturers, the media, and the ‘Aidserati’ of the
activist movements, who could afford, or leverage
funding, to participate in the conference proper. The
space created itself, in the form of a parallel community
conference … what would become the Global Village,
and within that ‘Women at Durban’ sowed the seeds for
the subsequent Women’s Networking Zone, convened for
the first time under this banner at Toronto, 2006.
The Women’s Networking Zone
is essentially a story-telling space. It
offers a platform to women whose
stories are not or have not been heard
on the main stage, or in the plenary
sessions; who do not cut the ice in the
selection of abstracts, because stories
still do not constitute evidence in the
eyes of the academics and researchers
who sit on selection committees. But
stories are sometimes all we have, and
they provide a springboard
to collective visions, joined-up actions,
partnerships, innovations and change.
…stories
still do not
constitute
evidence in
the eyes of the
academics and
researchers…
In Focus…
From Criminalisation to Agency… and other stories
Luisa Orza
Sunday • 20 July 2014 9
Stories have been the corner-stone
of action to address one of the most
egregious human rights violations
affecting women living with HIV:
the coerced or forced sterilisation
of women living with HIV without
their informed consent. The telling of
stories in a dedicated women’s space
(the ‘Young Women’s Dialogue’, a
space created by ICW in Namibia in
2006), underpinned a lengthy process
of investigation, documentation
and advocacy which culminated
in a court process in which it was
recognised that the claimants’ consent
had not been appropriately obtained
before they underwent sterilisation
procedures. More than this, this
process put the issue of coerced and
forced sterilisation on the global
policy agenda, and contributed to
both a broader and more inclusive
understanding of both violence
against women living with HIV,
and sexual and reproductive health
and rights.
Violence against positive women
is any act, structure or process in
which power is exerted in such a
way as to cause physical, sexual,
psychological, financial or legal
harm to women living with HIV.
[MariJo Vazquez & Fiona Hale,
Violence against women living
with HIV/AIDS: A background
paper, 2011]
Storytelling, and the ability to hear
one another’s stories, is and must be
at the heart of women’s advocacy and
leadership, yet the spaces for telling
our stories are constantly under threat
(and closing), due to lack of funding
for women’s networks, and spaces for
dialogue, be they virtual or physical,
though examples of the need for and
ultimate ‘success’ of such spaces – in
harnessing energy and catalysing
change – abound. Networks of
women living with HIV, including
the European Network (WECARe+),
the UK Network (PozFem), and the
Cameroonian Network of Women
Living with HIV (CCAF+), are
currently inactive due to lack of
funding, to name but three. And those
networks and spaces that remain
universally rely on the voluntarism
and personal commitment of their
staff and members creating stress
and burnout. But without funding
to sustain our spaces, how are we to
move towards agency?
Funds for these programmes,
whether women’s rights, LGBTI
rights, sex worker rights or rights
for people who use drugs, are key
to ending gender-based violence
and HIV. Lack of funding is a
gross human rights violation.
[Alice Welbourn, The gender
politics of funding women’s
human rights defenders,
openDemocracy,
December 2012]
The Women’s Networking Zone (WNZ) also provides an
opportunity for the ‘testimonies of ordinary women’ to be heard
by policy makers, technical agencies and donors, and for these
actors to engage in critical, solution-oriented dialogues with
women in all our diversity. One such critical dialogue taking
place in the WNZ this week will be among women living with
HIV, women’s rights and gender advocates, and representatives
of the senior leadership team of the Global Fund for AIDS,
Tuberculosis and Malaria, regarding the implementation of
the Global Fund’s Gender and Sexual Orientation and Gender
Identity Strategies.
Yet, the WNZ itself faces a greater challenge to raise adequate
funding for its installation from conference to conference, and
relies on the goodwill, energy, creativity and resources of more
and more volunteers, despite a growing demand by an ever
broader constituency for its use and continuation.1
But during AIDS 2014, the WNZ will provide an opportunity
for storytelling, exchange, learning and dialogue; an opportunity
to bring those frequently left on the margins to the centre;
an opportunity to ‘push the envelope’ and move ourselves,
sometimes in sweeping strides, sometimes inch by uncomfortable
inch, from criminalisation to agency…
Footnote:
1. The WNZ lives to see another conference thanks to the tireless
efforts of the Australian coordinating team, Straight Arrows,
Positive Women Victoria, Women from Asia-Pacific Plus, and ICW
Global, and generous donations from the Global Coalition on
Women and AIDS/UNAIDS, UNDP, UN Women and others.
Luisa is an independent consultant and a
women’s rights advocate
…without
funding to
sustain our
spaces, how
are we to
move towards
agency?…
WNZ@AIDS2014: ‘Stepping Up’
The WNZ programme will be arranged around the following daily themes:
Monday: Access to ART and Health Services
Tuesday: Sexual and Reproductive Health and Rights
Wednesday: Discrimination and Violence
Thursday: Criminalisation and Justice
A full programme of related sessions, will explore these themes, showcase the
work spearheaded by women – including young women – living with HIV, and
from key affected populations, and engage key stakeholders and thought leaders
in critical dialogue.
A daily (11h00) Community Dialogue led by women living with HIV will
kick-start the programme unpacking and debating the theme for each day, and
an early evening session ‘Let’s talk about it at the Zone’* let by ATHENA Network
will provide a chance for debriefing, downloading and reflection over a cup of
tea, at the end of the day’s conferencing.
* ‘Let’s Talk about it at the Zone’ will take place on Monday, Wednesday and
Thursday at 17h00.
10 Sunday • 20 July 2014
Emily Bass, USA
Every aspect of prevention is gendered – whether it is
voluntary medical male circumcision, where women play a
key role in decision-making, wound care, communicating
and negotiation with partners; PrEP using oral Tenofovirbased
drugs (the first potentially woman-initiated
prevention strategy since the female condom;) or treatment
as prevention, which can mean vastly different things in
terms of the responsibility for prevention for men and
women in sero-discordant relationships.
What I would love to see from Melbourne and from
the global response in general, is that the gendered nature
of these strategies and other possible additions, like
microbicides, finally ends-up front and center. We can’t
keep talking about the beginning of the end of AIDS,
without talking about what high impact prevention means
for women. And of course, this means placing women
at the center of the conversation – leading dialogues,
designing strategies, delivering the messages.
Kate Montecarlo Cordova, Philippines
I am very optimistic and positive that the AIDS 2014
Conference will open a wide path to understanding the
different women’s rights, health and needs. Women should
not just be defined by what is between their legs.
I am hoping that health and HIV advocacy will open
its doors to the concept that people have different sexual
orientation, regardless of their assigned sex at birth
or gender identity and expression and that, their biopsychosocial
health needs are essential to their well-being,
so this should be treated separately.
Right interventions provided for people’s respective
health issues is a basic human right.
Claudia Ahumada, Chile
My hope is that this International AIDS Conference
will be a space for advocates to re-energise and come
together, to show the world that we know how to do things
differently to truly achieve change, to take forward and
scale-up effective HIV responses, which are rights-based
and gender transformative..
Susana Fried, USA
Holding the meeting in Melbourne will be an
opportunity to highlight HIV issues in Asia and the Pacific
– especially the key issues of the gender dimensions of HIV
in the region’s predominantly concentrated epidemics.
One excellent outcome would be stronger communication
and collaboration between networks of key HIV affected
populations, networks of women affected by HIV, women’s
health and rights organisations, and organisations focusing
on TB amongst marginalised groups.
Recognising that these are not mutually exclusive
categories, could, perhaps, result in vastly stronger
advocacy, vastly more effective HIV responses, and vastly
decreased internal conflict for those who stand with feet in
more than one affected community.
It could, indeed, help us to ‘step up the pace’ toward a
human rights and gender equality affirming HIV response.
Women’s Voices…
On conference expectations…
Jennifer Gatsi, Namibia
I hope that the 2014 AIDS Conference will provide a
platform to share experiences and innovations not only from
scholars of various fields, but also from community members
and organisations who will be able to use this opportunity to
also contribute their opinions to the global HIV and AIDS
response. Above all, it is crucial to invest in the meaningful
involvement of communities in dealing with the epidemic’s
impact on the grassroots levels, and I look forward to seeing
this implemented within and beyond the conference walls.
While the importance of treating the social determinants
of HIV and AIDS have been increasingly recognised, I also
look forward to a scaling-up of support from civil society
and national stakeholders in addressing gender equity,
women’s empowerment, food security, and rural areas as
factors that impact, and are impacted by, the HIV and
AIDS epidemics.
Lillian Mworeko, Uganda
What we need, and what I expect from AIDS 2014 are
strategies to respond to governments that embrace harmful,
human rights violating, and discriminatory laws and policies
that directly undermine the response to HIV and impact on
women. The International Community of Women Living
with HIV and AIDS Eastern Africa (ICWEA) has been
battling with the Uganda’s HIV and AIDS Prevention and
Management Bill 2014, which has provisions for mandatory
HIV testing, mandatory HIV status disclosure, attempted
transmission and intentional transmission of HIV, which
heavily impact on women, men, young people and children
disproportionately, with the greatest impact on women
and girls.
We need strategies to facilitate access to justice, and the
safety of frontline human rights activists. The outrageous
trial of the HIV positive nurse Rosemary Namubiru, accused
of ‘criminal negligence’ in the workplace, when a patient in
her care was accidentally exposed to her blood, and whose
HIV positive status meant she never got a chance
to a fair hearing or a presumption of innocence.
She did not have a lawyer at the beginning,
and even the life of frontline advocates was
at risk.
Mmapaseka Steve Letsike, South Africa
The AIDS Conference 2014 has to make sense!
The International AIDS Conference in Melbourne,
AIDS 2014, is a biennial gathering for those working in the field
of HIV, including policy makers, people living with and affected
by HIV, and other individuals committed to ending the multiple
pandemics. However, too many times, conferences like these
speak about best practices, best models, guidelines and what
needs to be done, while the message should be reaching the policy
makers and implementers at a national and regional level.
We are nearing our 4th decade in the time of AIDS – and
hence, we cannot still be talking about whether or not we should
commit and/or take actions. Instead, fundamental criteria of our
responses should be ensuring that ‘no one is left behind’.
The upcoming AIDS Conference should not only be seen as
the re-union of those in the field, but should be seen as another
chance to make it work. We have to get to Zero new infections,
Zero AIDS-related deaths, Zero discrimination and Zero
gender based violence. We need to end the ‘struggles’, and start
ensuring that communities have access to competent and quality
health services.
Michaela Clayton, Namibia
The conference theme for AIDS 2014, Stepping up the Pace,
reminds us that although substantial gains have been made in
cure and vaccine research, and we are seeing growing numbers
of people receiving antiretroviral treatment and falling rates
of infection, progress in the AIDS response has not been
universal. Widespread and often state-sponsored violations of
the fundamental human rights to equality, dignity and freedom
from discrimination have directly contributed to the fact that sex
workers, LGBTI, people who inject drugs and many others are
being left behind. This situation is being exacerbated by a lack
of political will on the part of many governments to remove the
repressive laws and policies that fuel these violations, which in
turn present major barriers to access to prevention and treatment
services for all who need them.
We hope that AIDS 2014 provides an opportunity to finally
drive the message home to policy decision-makers around the
world that what we need to leave behind is moral judgement and
personal and religious prejudices – not people.
Regional Voices…
On conference expectations…
Sunday • 20 July 2014 11
12 Sunday • 20 July 2014
Women’s Voices…
Positive change is limitless…
Ebony Johnson
I will no longer be silent, and
we together will no longer
be neutral. We will no longer
say we are doing enough. Our
aim for post 2015 should be
clear and uncompromising.
Zero compromise for violence
against women and zero
tolerance for discrimination
against women affected by HIV.
[Michel Sidibe, UNAIDS
Executive Director, CSW 2014]
Nor shall we be silent! With our
fingers clasped together as we
stand side by side unified and
resolute on change. Together we
have joined from many places
across the globe connected by
one spirit. A spirit of revolution…
A spirit of justice and a spirit that
knows that positive change is
limitless. In these moments, we
join now here in Melbourne, as
we have joined in WNZ’s across
the globe hungry, tenacious and
championing for the health, rights
and full lives of women and girls.
In many tongues we cry out, ‘Todos
los derechos de todas las mujeres’,
‘Amandla Awethu’, ‘Includere le
donne nella ricerca’, and we are
more than wives and mothers –
we are women and girls and our
lives matter!
The WNZ creates a safe, vibrant
and energised advocacy space
for women and girls from every
spectrum to stand-up, speak-out
and create change. Birthed as a
way to connect women to the
International AIDS Conferences,
the WNZ has grown into a global
space for women’s organising,
empowerment and unity that is
utilised by thousands of women
world-wide.
Looking back to 2008 in Mexico,
the WNZ gave a platform to a
brave group of women living with
HIV from Namibia. With courage,
tenacity and resolve for change,
they shared their accounts of being
forcefully sterilised. They spoke
of the atrocities and injustices
reinforced by patriarchy, punitive
laws and medical negligence
that dared to rob them of their
choice, strip them of their right
to motherhood, and unravel the
very fabric of their womanhood.
As these brave few spoke, it was
immediately clear that in the spirit
of the WNZ, they had not spoken as
victims, but rather to rally women
to victory. This was the beginning
of a ground-swell. Women
world-wide heard their call and
with a small seed planted, the
women of Namibia and women
world-wide, became united in a
mission to ensure that all women
living with HIV are informed and
empowered about their options to
have healthy HIV negative babies,
holding the medical community
accountable to follow science,
about harmful cultural norms and
personal beliefs that oppose sound science, repeal inhumane
and medically unjust laws and practices that have fuelled
forced and coerced sterilisation and hold governments
accountable to upholding the health and human rights
of women living with HIV. From seeds planted by few to
the outcry of many…from the WNZ to the Namibian High
Court and the halls of the United Nations, change has taken
root and forced and coerced sterilisation shall no longer be
ignored or accepted.
Sterilization should only be provided with the full, free
and informed consent of the individual.
[OHCHR, UN Women, UNAIDS, UNDP, UNFPA, UNICEF and
WHO Interagency Statement, May 2014]
Women living with HIV demand our fundamental human
rights and reclaim our right to motherhood and to make
informed choices about our reproductive health.
[ICW Global, CSW March 2014]
In 2010 in Vienna, women,
mothers, leaders, advocates
joined at the WNZ from every
corner of the globe. Here we
stood in thanksgiving as the
CAPRISA Microbicide trial results
were announced, the emergence
of a revolutionary new
prevention tool for women with
unlimited possibility. Together
in the WNZ, we advocated for
medication for women living
with HIV beyond prenatal care,
we called for women to be
included in the laws, policies
and practices that impact on our lives, and spoke-out for
sexual and reproductive health and rights for women who
perform sex work, use drugs, and all those from communities
who are too often underserving or simply forgotten.
Through dialogues, roundtables and panel discussions
…atrocities
and injustices
reinforced by
patriarchy, punitive
laws and medical
negligence…
Sunday • 20 July 2014 13
In 2013, the WNZ took regional
focus at ICAAP in Bangkok and at
ICASA in Cape Town. During ICAAP,
the WNZ brought together women
from across Asia and the Pacific. For
many women this was one of the
few treasured safe spaces to talk
about the complexities of sex work,
reproductive health, living with
HIV, supporting women who use
drugs, or even rights. In Cape Town,
young women leaders took the
helm at the WNZ with bold sessions
addressing violence, lesbian health,
education, leadership, organising
…dynamic forum
with a mission
to increase the
visibility, advocacy
and action to
health and human
rights of women
and girls…
we unpacked the issues core to
advancing women’s health, safety
and rights. We took to the streets
of Vienna moved by the sounds
of Annie Lennox, fuelled by our
determination for equality. So we
marched…marching for change…
marching for our lives!
We know that equality for
women means progress for all.
[Phumzile Mlambo-Ngcuka,
UN Women Executive Director,
CSW 2014]
In 2011, the WNZ had taken
flight beyond the confines of the
International AIDS Conference
destined to expand this dynamic
forum with a mission to increase
the visibility, advocacy and action
to health and human rights of
women and girls. With this came
an invigorated focus on young
women. First stop was the 6th IAS
Conference on HIV Pathogenesis,
Treatment and Prevention in Rome.
HIV and sexual and reproductive
health and rights advocates,
researchers, political leaders and
UN officials assembled daily in
the WNZ to provide interactive
dialogues, mentorship and
trainings for emerging young
leaders from across the globe.
The WNZ became a virtual school
without walls building the literacy
and capacity of young women
on everything from Microbicides
and treatment as prevention to
informed decision-making to
grassroots advocacy. In 2011, the
next stop was Addis Ababa with
again the WNZ being the place for
creative ingenuity for advocacy
and beaming bright eyed young
women learning about their bodies
over traditional tea ceremonies and
calling for an end to violence.
We believe that no one should
be left behind, so we must
deal with the challenges that
women and girls face…If we
go this way we will make more
gains than ever before.
[Nana Oye Lithur, Ghana Minister
of Gender, CSW 2014]
In 2012, women and girls, mothers
and daughters, advocates and
activists made the WNZ come alive
in Washington, D.C. at the IAC. The
WNZ provided a multi-faceted
conference within a conference.
Presidents, HIV leaders, dignitaries
made themselves at home
alongside rising young leaders
and seasoned change-makers;
together calling for women’s rights,
an end to violence against women,
inclusion of women in research,
and education for girls. Innovative
sessions highlighted best practices
in sexual and reproductive health,
and tools for organising and
impact. New partnerships were
formed and new pathways to
advocacy were built continuing the
legacy of the WNZ.
and HIV criminalisation. The WNZ at ICASA gave young
women from across Africa a place to stand-up, speak-out
and fuse together to vision new healthier realities for African
women and girls.
As a leader this was my first time in a conference and my
first time to stand up and speak. It was great to speak on
the issues of rape and discrimination for lesbians and our
children. Lesbians are not safe in South Africa. I took a
STAND! I felt so good…
[Young woman, South Africa, ICASA 2013]
As the sun rises on the WNZ in Melbourne for IAC 2014,
we will dare to be declarative, determined and united as
women to build on our successes, be clear of our asks, and
move toward a post-2015 agenda that puts the health and
rights of women and girls front and centre. Be a part of
creating change…
Ebony is with the Athena Network.
14 Sunday • 20 July 2014
Sunday, 20 July
09:00-11:00 A health systems strengthening (HSS)
approach towards elimination of new infections among
children and keeping mothers alive: A Zimbabwe experience
Room 109-110 [Non-Commercial Satellite]
11:15-13:15 Gender and sexual and reproductive health
and rights in the Post-2015 Framework
Room 203-204 [Non-Commercial Satellite]
Stepping up to advance issues globally for sex workers
and HIV
Room 101-102 [Non-Commercial Satellite]
13:30-15:30 Intersecting risks, strategies and barriers for
key affected populations to prevent and treat HIV: How to
step up the global gender pace
Clarendon Auditorium [Non-Commercial Satellite]
18:50-20:30 Plenary: Opening Session
Plenary 2
Monday, 21 July
07:00-08:00 By women for women. Harm reduction
among women who inject drugs
Room 203-204 [Non-Commercial Satellite]
07:00-08:30 The impact of HIV funding on Trans*
communities: Keeping human rights central to the
HIV response
Room 101-102 [Non-Commercial Satellite]
08:20-10:30 Plenary: Where are we now?
Plenary 2
11:00-12:00 Community Dialogue: Access to ART
and services
Women’s Networking Zone, Global Village
11:00-12:30
Criminalisation of key populations: How to respond to HIV?
Melbourne Room 2 [Symposia Session]
Upholding the rights of women and girls living with HIV in
healthcare contexts
Room 103 [Community Skills Development Workshop]
12:50:13:50 Pushing the envelope: Gender, equality and
rights – getting it right for key affected women
Women’s Networking Zone, Global Village
13:00-14:00 No One Left Behind: Stepping up the pace
on the removal of punitive laws to advance human rights
and gender equality
Melbourne Room 1 [Special Session]
Shedding light on social protection responses
Room 103 [Oral Poster Session]
The social and cultural context of risk and prevention
Room 105-106 [Oral Poster Session]
Antiretroviral therapy in pregnancy: A brighter future
Room 109-110 [Oral Poster Session]
14:30-15:30 Positively fabulous+ women’s voices:
Feature Documentary
Clarendon Room C, Global Village
14:30-16:30 Living, loving, working: HIV and sex work
Plenary 3 [Oral Abstract Session]
14:30-17:30 HIV, gender-based violence and sexual
health – men, women and transgender: How to bring
these intersecting and interlinked issues into the
Post-2015 Agenda
Room 103 [Leadership & Accountability
Development Workshop]
Using the law to defend human rights in the HIV epidemic:
Courts in action
Room 109-110 [Leadership & Accountability
Development Workshop]
16:30-18:00 A roadmap for women’s rights
Clarendon Auditorium [Symposia Session]
Rape stories that rural community grassroots women
never tell
Community Dialogue Room, Global Village
18:30-20:30 Women, HIV/AIDS and non-communicable
diseases: A Call to Action in lower and middle income
countries
Plenary 3 [Non-Commercial Satellite]
The Second Robert Carr Memorial Lecture: Celebrating
Robert Carr’s legacy
Clarendon Room D&E [Non-Commercial Satellite]
Validating the elimination of mother-to-child transmission
has been achieved: Global criteria and current status
Room 101-102 [Non-Commercial Satellite]
Tuesday, 22 July
08:20-10:30 Plenary: What’s holding us back and how
do we move faster?
Plenary 2
11:00-12:00 Community Dialogue: Sexual and
reproductive health and rights
Women’s Networking Zone, Global Village
11:00-12:30 Sexier than you think: HIV policy, regulation
and legislation
Plenary 3 [Oral Abstract Session]
Women drugs users: Our voices, our lives, our health
Clarendon Auditorium [Symposia Session]
Criminalising condoms: Sex workers and HIV services at risk
Room 109-110 [Community Skills
Development Workshop]
12:00-12:45 Rights, Camera, Action! The pregnancy
journey when you are living with HIV
Women’s Networking Zone, Global Village
13:00-14:00 Sex Workers: Gaps in prevention and care
Room 109-110 [Oral Poster Discussion Session]
Public health and human rights: How to support both in the
context of HIV, women and motherhood
Community Dialogue Space, Global Viallge
13:35-15:00 Strengthening partnerships for advancing
the SRHR of women and girls living with HIV
Women’s Networking Zone, Global Village
14:30-16:00 Critical justice: Human rights, legal issues
and HIV
Plenary 2 [Oral Abstract Session]
When science meets the bedroom: 50 shades of pleasure
and prevention
Clarendon Auditorium [Bridging Session]
14:30-17:30 From within: Understanding and addressing
self-stigma among people living with HIV
Room 104 [Community Skills Development Workshop]
16:30-18:00 Stigma: Contexts, intersections
and responses
Plenary 2 [Oral Abstract Session]
Improving advocacy for respectful maternity care and the
reproductive rights of women with HIV
Clarendon Room D&E, Global Village [Workshop]
Upcoming
events
Sunday • 20 July 2014 15
Sex workers will be at AIDS 2014
this year, in the hopes of shifting
paper commitments to address
sex workers as ‘key populations’
to real and tangible access to
services, as well as a shift in legal
contexts, which are a barrier
to both service access and
addressing stigma.
In many cases, state-sanctioned
violence against sex workers is
systemic, and sex workers have no
recourse if they are exploited or
abused by clients, their partners
or community members. In many
cases, even where selling sex is
not criminalised, law enforcement
officials still arrest sex workers
(Zimbabwe is an example). In
other spaces, like Kenya, municipal
authorities are considering further
sanctions against sex work, in
spite of progress in the health
sector acknowledging sex workers
as vulnerable.
Those in power, distracted by
an ideological debate, forget their
responsibilities in favour of endless
discussions that often fail to involve
sex workers (let alone, be led by
them) and focus on stereotypical,
essentialist and simplistic versions
of what sex work is, and who sex
workers are. Framing sex workers
as either victims OR agents fails
to acknowledge the complex and
fraught every-day decisions that
women, transgender women and
men make. Even in this framing,
sex workers themselves are left out,
invisiblised and marginalised – and
rendered characters in a drama of
extremes (Somaly Mam being a
recent example.)
In reality, sex workers are on the
front lines of battles where gender,
poverty, sexual identities, race and
class intersect. With most countries
across the world preferring to deal
with easy wins (South Africa’s
Women’s Equality and Gender
Equity Bill as an example) but
neglecting to take a stand against
the criminalisation of sex work,
sex workers will continue to face
enormous hurdles in accessing
services and justice.
The World Health Organisation,
in its soon-to-be launched
(at AIDS 2014) Consolidated
Guidelines on HIV Prevention,
Diagnosis, Treatment and Care for
Key Populations, recommend that
countries across the world
…work toward decriminalization
of sex work and elimination
of the unjust application of
non-criminal laws and
regulations against sex workers.
This is a noble goal, but
few countries will take it up
without significant advocacy at
country level.
To achieve this, there needs
to be strong sex worker led
alliances, organisations and
movements – and more
investment in strengthening and
supporting these often fledgling
and threatened groups. The Red
Umbrella Fund, a pioneering
donor which involves sex workers
directly in decision-making on
grants, is a good example of
progress in this regard.
We also need to diversify support – rather than supporting
purely bio-medical interventions. Structural interventions
that have the potential to address more holistically the
challenges sex workers face, will have more rewards in the
longer term than HIV testing/treatment initiatives alone.
Very little of the funding available for HIV programme goes
to support human rights initiatives, and fewer still, support
sex workers’ human rights protections.
So, as sex workers gather for a pre-conference, and create
safe spaces for themselves in Melbourne, leaders, researchers,
academics, institutions and policy makers will be challenged
to make real progress and support change, and will be
measured by their response.
Sally is with SWEAT (Sex Worker Advocacy Task Team),
South Africa.
Women’s Realities…
Challenged to make real progress
Sally-Jean Shackleton
…left out,
invisiblised and
marginalised –
and rendered
characters in
a drama of
extremes…
Editors: Johanna Kehler jkehler@icon.co.za
E. Tyler Crone tyler.crone@gmail.com
Photography: Johanna Kehler jkehler@icon.co.za
DTP Design: Melissa Smith melissas1@telkomsa.net
Printing: Minuteman Press Melbourne minuteman@spencerprint.com.au
16 Sunday • 20 July 2014
In my opinion…
Understanding the community
Ida Susser, Zena Stein
Community prevention
If the health services are
not themselves in touch and
knowledgeable about the needs of
local women; the trial results will
be affected.
Perhaps, the success of the
CAPRISA trial, in contrast with the
second trial, was facilitated by the
continuity of care and contact
provided by many trialists in
Vulindlela, the site of health and
educational activities over more than
a decade. Vulindlela women more
often used the microbicide, and
hence had better results in the trial
than city women. Was this a sign
of trust?
Repeated control trials, whether
in similar or dissimilar sites, cannot
be expected to provide a realistic
model for comparison, unless the
community is knowledgeable
and carefully informed, the
methods used with individual
trialists are studied and tested, and
there is familiarity and trust with
investigators. Trials need to aim as far
as possible to copy the original trial
in these respects, which are
not as easy to duplicate as is
the pharmaceutical.
In this case, the failure to replicate
the conditions of the original
study may be a crucial reason why,
shockingly, we still do not have a
microbicide – four years after the
original success.
Ida is a professor of anthropology
at CUNY, NY, and Zena is
an epidemiologist of
Columbia University.
At the international AIDS
conference in Vienna in 2010,
the South African research group,
(CAPRISA), headed by Quarraisha
and Salim Abdool Karim, presented
evidence from their randomized
control study, that a microbicide,
based on the well-known anti-AIDS
drug, Tenofivir, effectively prevented
HIV infection among users. What
a triumph!
After a decade of effort and
disappointment, at last we had
a microbicide: at last, we had a
protective method for women!
Four years later, and what
results do we have to report…?
Unfortunately, since 2010, new
research, also executed in Southern
Africa, has documented the failure
of a randomized control trial,
directed by a US team with excellent
credentials, to confirm the CAPRISA
result. This finding has much delayed
the roll-out of the microbicide.
We must ask whether this failure
was due to the Tenofovir effect itself,
or to the fact that the US researchers
failed to set-up the conditions
for many women to apply
the microbicide?
We already knew from
evidence-based adherence in the
CAPRISA study that the beneficial
effect achieved there depended
on adequate numbers of women
using the microbicide. Just as we
know from comparable adherence
measures in testing the preventive
capability of oral use of Tenofovir
that actual use determined the
preventive power of Prep.
At this juncture, current observers
attribute the failed result of the US
trial to a failure in appropriate usage.
The US team, for instance, advised
women to use a different frequency
pattern for applying the microbicide,
based, apparently, on an assumption
that women would be more likely
to remember to use the microbicide
gel, if they had to do so every
day. CAPRISA, on the other hand,
responding to the known pattern
of intercourse that was adapted to
the vagaries of migrant work and
other absences of partners, advised
use only on the morning before
intercourse and again afterwards.
Were these differences in protocol
responsible for differences in effect?
We would argue that this was only
one part of a general failure of the
researchers to facilitate responses
by the women in the study. In fact,
none of the expected results were
shown in this trial. Prep, an oral form
of Tenofovir, had been demonstrated
to be an effective preventive two
years later than the microbicide, and
was certainly anticipated to reduce
infection in this particular research.
However, in this trial, oral Tenofovir
also failed to have any effect.
Local-level community-based
methods
CAPRISA has in the meantime
published carefully controlled
evidence of the effects of a
theory-based method of
administration on microbicide
usage, and, in turn, on results.
Without study at the local level of
the understanding and response
of community women, preventive
methods will fail.
…without study
at the local
level of the
understanding
and response
of community
women,
preventive
methods
will fail…
…a crucial
reason why,
shockingly, we
still do not have
a microbicide…
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Supported by Oxfam