Project Description

In Focus…
Are we really protecting human rights…?
What’s inside:
Special report:
The continuity of
Feedback from
the Global
Colourful fashion
A benefit to all…?
News from the
Building visibility
A leap towards
Activists’ voices…
Re-igniting the
Local voices…
Integrating sectors
In our opinion…
In the International AIDS
communities, men who have sex
with men (MSM), transgender
women and sex workers are
much discussed as ‘high risk’
populations, but too often the
most affected members of these
communities are side-lined
when it comes to strategy and
decision-making in the AIDS
response; a situation rendered
starkly by the exclusion of sex
workers and drug users from the
DC Conference, due to restrictive
US visa requirements.
The matter of incorporating the
often complex experiences of
these diverse constituencies at the
centre of policy and programming
goes beyond obvious questions of
fairness. Speakers at yesterday’s
plenary session Dynamics of the
Epidemic in Context emphasised
that the voices of people facing
multiple stigmas and barriers to
take control of their care are often
the only source for vital information
about how to effectively incorporate
novel methods of prevention into
the daily lives of those most at risk.
Despite the goodwill of delegates
– the session was a sea of green
‘lady liberty’ headbands worn in
support of excluded sex workers,
while others sent postcards in
solidarity with IDU’s – stigma
cannot be defeated and exclusion
ended by heart-warming rhetoric
about empowerment. Dr Paul
Semugoma of Uganda made his
case clear saying ‘MSM exist in
every country’, pointing out that
there are still some countries who
do not collect statistics about HIV
in the MSM population. His own
country, Uganda, is among those
in the world with the most punitive
legal and social environment for
MSM – as a result, even doctors
are often clueless or indifferent to
MSM-specific health concerns and
ignorant about even the most basic
methods of prevention.
The patient who changed
my life
Despite being a gay man, Dr.
Semugoma was once just such a
doctor. ‘I had been dealing with HIV
among Ugandans, but never made
the connection’ between MSM and
HIV, he said, until being presented
with a positive patient who was
also gay and recently diagnosed.
His question, ‘How do I protect my
lovers’ led Semugoma down a path
of self-education and activism that
changed his approach to medicine
and life.
Nevertheless, MSM in Uganda
still face an uphill battle. The First
LGBTI clinic was subject to ‘fierce
criticism’ by government and civil
society. In Senegal, government
persecution of outreach workers
made study of HIV in MSM nearly
impossible, as participants were
too intimidated to participate.
Such stigma continues to shape the
demographics of the epidemic, with
prevalence among Black MSM
across Africa and the Diaspora
far exceeding those of comparable
populations without multiple layers
of exclusion. Even basic measures
are still lacking. Semugoma
passionately described the lack of
condoms and lube in many African
countries, incredulously noting that
fully funding such interventions
would cost $136 million – relatively
cheap by standards of global
health initiatives.
Saviours and stigma
Cheryl Overs of Australia made
the case for sex workers, similarly
emphasising the need for clear
Mujeres Adelante Friday •27 July 2012
Daily newsletter on women’s rights and HIV – Washington 2012
Kate Griffiths-Dingani
2 Friday • 27 July 2012
understanding of sex workers’ realities
and calling for a back to basics approach,
even while recognising that AIDS2012
represents a ‘new era’ of prevention
comparable to the era of treatment,
launched in 2000 in Durban. She argued
that tension between biomedical and
behavioural approaches to ending the
epidemic are a red herring that fail to
address the lived experience of sex workers
‘Sex workers understand that market
forces determine what will happen’ and
what approaches to prevention will
work. She worries that microbicides and
PrEP may increase client demands for
condomless sex, noting that the internet
already hosts discussion among clients
hoping to be ‘freed from rubber’ in the near
future by these advances. She also argued
that such interventions may represent an
increased financial burden on sex workers.
She noted the continuing criminalisation
of sex work and HIV positive sex workers
(in some states misdemeanour soliciting is
increased to a felony if the sex worker in
question is living with HIV), a situation
that understandably discourages testing.
She argued that what sex workers need
most is a safe place to work and voice in
the policies that impact them, summed
up in the slogan ‘save us from saving’,
while dramatically highlighting the loss of
dignity and autonomy involved in many
‘anti-trafficking’ raids championed by both
religious and political groups.
Overs argued that empowered sex
worker communities can both protect themselves by collectively
maintaining standards of condom use, and contribute to an effective
research agenda on sex work.
One plate, one cup, one spoon
Debbie McCmillan of DC Transgender Empowerment shared
her own life story of multiple stigmas in a dramatic example of the
complex interplay of disease and discrimination. She explained
that her experience as an African American transgender woman
and formerly incarcerated person, sex worker and drug user mean
that she had lived a life ‘that practically guaranteed’ that she would
contract HIV, though she believes she became infected through
sexual violence that inevitably resulted from her imprisonment in a
men’s prison. Saying ‘I represent the heart of the epidemic’, she also
detailed her own mother’s history as an HIV positive sex worker and
drug user; Debbie’s mother died while living with her own mother,
in a home where she faced such intense stigma that she was only
allowed to use her own separate ‘one plate, one cup and one spoon’.
To Debbie, the discrimination she has faced not only from the
criminal justice system, but also from healthcare providers recalled
her mother’s experience. As a result, she emphasised the need for
LGBTQI specific treatment for drug addiction and HIV.
The marginalisation laid out in these presentations at this
plenary – implicitly the LGBTQI plenary of the conference – also
highlighted the ongoing exclusion from the conversation of women
who have sex with women and transgender, who – although not
excluded by visa requirements – nevertheless went not only unheard,
but unmentioned in the plenary. Like MSM, transgender women,
sex workers and IDU’s, these populations face multiple stigmas and
violence, and are the subject of very little research with respect in the
International AIDS community. For these groups, the basic question
posed to Dr Semugoma remains relevant: How can I protect my
partner? and How can I protect myself?
Kate is an anthropologist and writer, who lives in Brooklyn, NY
and frequently works in Durban, South Africa.
…stigma cannot
be defeated
and exclusion
ended by
rhetoric about
…a voice in the
policies that
impact them…
While the location of the AIDS2012 conference unfortunately
excluded many transgender, sex workers and drug user activists
from around the world, it has also had the unexpected benefit of
highlighting community organisations representing marginalised
groups in the U.S., many of which have been unable to fully
participate in previous conferences.
Plenary speaker and staff member at Transgender Empowerment
Debbie McMIllan emphasised the importance of LGBTQI specific
treatment options and organisations in her plenary address,
noting in particular that the treatment programme which helped
her ‘get sober’ after years of drug abuse and addition, Bridgeback,
was closed for lack of funding. Unfortunately, this situation is
not unique. In a country in which the rights of same sex couples
to marry, and for LGBTQI people to live free of workplace and
hiring discrimination remains subject to heated debate in
the mainstream political sphere, organisations serving these
communities face an ‘uphill battle’ in terms of adequate support,
as well as ‘push back’ from the larger community.
As AIDS2012 got underway in D.C., a new service organisation,
Casa Ruby, dedicated to providing a ‘safe haven’ for transgender
Latinas living in the nation’s capital launched a campaign to
offer free HIV testing to transgender people, as well as any other
members of the community in need. This effort was met with
death threats left on the organisation’s answering machine. Ruby
Corado, founder of Casa Ruby, doesn’t see the incident as isolated,
saying ‘I have been to dozens of funerals throughout this city and I
have also been hundreds of times to the hospitals to aid people who
have been victims of a violent crime or death for being who they are’.
Kate is an anthropologist and writer, who lives in Brooklyn, NY and
frequently works in Durban, South Africa.
An ‘uphill battle’…transgender in the U.S. Kate Griffiths-Dingani
Friday • 27 July 2012 3
News from the Global Village…
The De Colores Trans Fashion Show
Village came to the ‘village’ with
colourful fashion and entertainment…
A benefit to all…? Sierra Mead
‘The challenge in front of us is not
treatment as prevention; it’s the
healthcare system of the world that
stinks’. – Julio Montaner
In Tuesday’s discussion on ARVs for
Treatment & Prevention: Human Rights Issues
Julio Montaner, described British Colombia’s
(BC’s) dramatic reduction of HIV transmission
and infection since the implementation of
treatment as prevention. 55% of the infected
population in BC now has undetectable viral
loads. While this is an encouraging statistic,
we must remember that 55% undetectable
viral loads means that 45% of the people
living with HIV can still transmit the disease.
In Wednesday’s session Maximizing
Reproductive Possibilities and Choices for
Women Living with HIV, John Ong’ech
mentioned that if, for example, a woman
required sperm washing, because it is one of
the only possibilities for her to get pregnant
safely, she has access to it…if she pays the
equivalent to 200 USD. Statements like these
were ubiquitously mentioned throughout
many sessions at this conference. So the
impression I get is, yes biomedical treatments
for HIV are becoming more readily available,
but the people who need the treatment
cannot always access it.
In the same ARVs for Treatment & Prevention:
Human Rights Issues session, Susan Timberlake
from UNAIDS addressed this very nature
of expanding bio-medical responses. She
argued that if we do not invest resources
into the reason people cannot access care
and understanding the lack of adherence
to HAART, then bio-medical advances will
remain limited to the minority of people
who can afford them. Without a change
in healthcare systems, people with limited
resources cannot access the services.
Treatment as prevention is not successful in
Vancouver because Canada has money, as
one might be inclined to think. What Canada
has right is its healthcare system that helps
the people, not just the top percent who
can pay and access quality care. Montaner
explains that the healthcare system in BC
expanded to include the protection of basic
human rights to create services that work for
the people and for the betterment of
the community.
So, in the midst of the all the excitement
about the potential of Treatment as Prevention,
let’s not lose sight of ‘the challenges in front
of us’ – the huge gap between people who
need treatment and people who have access
to treatment, inadequate healthcare systems,
stigma barring access to services, and lack
of investment in ensuring that all people
who need access to ARVs (for treatment and
for prevention) have access. Otherwise, biomedical
advances will remain a ‘luxury’ for the
few who can afford it…
Sierra is with the AIDS Legal Network,
South Africa.
4 Friday • 27 July 2012
the Development Team provided
feedback on the framework, the
scope, the objectives, the audience
and the various sections of the
guidelines. The Development Team
was divided into four working
groups that further discussed
specific portions of the guidelines
and finally came to consensus on
the grading of the evidence and the
recommendations on each topic.
Grading of the evidence
and recommendations was
carried out using the Evaluation of
Evidence criteria described by the
Canadian Task Force on Preventive
Health Care.
…the discussion of
healthy pregnancy
and safe
conception are not
generally part of
HIV care…
Women’s Realities…
A huge leap toward reproductive justice…
Shari Margolese
The Women’s Networking Zone
played host to the launch of
ground breaking clinical practice
guidelines for pregnancy
planning and HIV in Canada.
Shari Margolese, HIV positive
community activist and coauthor
of the Canadian HIV
Pregnancy Planning Guidelines was
joined by Dr. Mona Loutfy, and
Ms. Logan Kennedy of Women’s
College Research Institute, Sandra
Hon Chu of the Canadian HIV
Legal Network, and Saskatchewan
activist Ms. Krista Shore to
engage international community
and academic champions for the
sexual and reproductive health and
rights of people living with HIV
in a critical dialogue on pregnancy
planning in the context of HIV.
In Canada, improved life
expectancy and quality of life for
people living with HIV coupled with
reduced vertical transmission has led
numerous people living with HIV
to consider pregnancy. The World
Health Organization states that ‘all
couples and individuals have the right
to decide freely and responsibly the
number and spacing of their children
and to have access to the information,
education and means to do so’.
However, due to HIV stigma, which
frequently leads to the violation
of human rights of people living
with HIV, the discussion of healthy
pregnancy and safe conception are
not generally part of routine HIV
care, and access to comprehensive
preconception and conception
resources and information is limited.
The recognition of this gap between
the reality of people living with
HIV desiring, intending and having
children led to the creation of the
guidelines. The Canadian HIV
Pregnancy Planning Guidelines
offer holistic, ethical, supportive and
evidenced-based recommendations
to guide and assist people living
with HIV, and their healthcare
providers, to make informed choices
about preconception, conception
and fertility in the context of HIV.
The intended outcomes of the
Canadian HIV Pregnancy Planning
Guidelines are: reduction of risk of
vertical transmission and horizontal
transmission of HIV; improvement
of reproductive, maternal and infant
health outcomes in the presence
of HIV; reduction of the stigma
associated with pregnancy and HIV;
and increased access to pregnancy
planning and fertility services.
The development of the
National HIV Pregnancy Planning
Guidelines was a multidisciplinary
partnership. Key stakeholders in
varied relevant fields were brought
together from across the country
to form the NHPPG Development
Team. These stakeholders included
fertility specialists, embryologists,
obstetricians, gynaecologists,
infectious diseases specialists,
paediatricians, family physicians,
HIV specialists, nurses, counsellors,
social workers, psychiatric
specialists, midwives, health
promotion experts, policy advisors,
HIV community leaders and
Consistent with a community-based
or participatory action approach,
guideline development has included
members of the affected community
in all aspects of the project,
from inception to publication,
including community participation
as co-principal investigator and
Development Team members.
The NHPPG Development
Team includes individuals and
organisational representatives of
each of the groups mentioned
above, as well as stakeholders
from across diverse demographic
groups and from across Canada for
national representation.
The mandate of this team was
to guide the development of the
guidelines by providing feedback
during six teleconferences and two
in-person meetings. Specifically,
The guidelines were critically reviewed by Drs. Mark
Yudin and Deborah Money both of whom are obstetrical/
gynaecologists who work mostly with women living with
HIV. Then all of the Canadian HIV Pregnancy Planning
Development Team members reviewed the guidelines The
process of formulating recommendations for the NHPPG
has involved lengthy deliberation of the available evidence
and practical experience from Development Team members,
including clinicians and people living with HIV. The team
considered the health benefits, side effects and risks to
prospective parents, as well as their unborn child. Additionally,
cultural and practical considerations where taken into
account when formulating recommendations, including the
acceptability of assisted (non-natural) conception within
various cultural groups, as well as access, availability and cost
of assisted fertility services across Canada.
The guidelines were submitted for review to the Infectious
Disease Committee and the Reproductive Endocrinology
Infertility Committee of the Society of Obstetricians and
Gynaecologists of Canada and published in the June 2012
Journal of Obstetrics and Gynaecology Canada.(
Shari is a co-author of the Canadian HIV Pregnancy Guidelines.
Activists’ voices…
Re-igniting the spark!
One almost feels the sombre
atmosphere as the panel of
activists air their views on the
issues they face in their various
The video from Alexei Kurmanaevskii of
Russia gives the session attendees a
chance to have a sneak peak in the life of a
drug user. Addressing the white elephant
in the room, which is the absence of
fellow drug users, Alexei demands, ‘stop
ignoring us. If you want to bring change, you
can’t do it without us’, as the room breaks
out in applause. ‘All we need is treatment,
syringes, condoms; we do not want to be
discriminated against’.
He was followed by Khartini Slamah from
the Asia Pacific who addressed the session
via a pre-recorded message. Khartini is on
the Board of Directors of the Network for
Sex workers. Due to the travel restrictions,
she too, was unable to attend the AIDS
conference. She demanded for the
removal of travel restrictions and mobilised
for a law reform. ‘We demand and advocate
for affordable treatment medication so that
it is affordable to those who need it’. She said
sex work is work and thus demands equal
rights. ‘We love what we are doing here and
all of you in Washington will miss us’, she
said as her message is met by chuckles
and applause from the audience.
Gina Brown, from New Orleans, was
another AIDS activist who started her
presentation by highlighting other women
activists who are not often talked about
in comparison to their male counterparts.
‘I didn’t get into this fight for me, but for
my daughter and others like her, who are
affected but not infected’. Gina gave a
passionate speech as she called out to
others to come out and speak up. ‘I can still
remember the day I was diagnosed. I didn’t
know any women speaking out about HIV. I
thought if I keep my mouth silent, how many
more people will suffer? Stand up even if you
don’t want to’. She called on mothers to
train their daughters to also stand up and
stand by their infected mother’s sides after
they are gone. ‘We have to bring a face and
a human touch to this. There is no space for
discrimination in the next generation. Think
about it’.
These were just some of the words from
some of the activists. Their passion was
clearly visible from their speeches and
interaction with the audience. However,
regardless of all the good work they
are doing, most of if it is affected by the
absence of financing. One question they
all had for each other was ‘where to from
here’ and ‘tell me what you need from me, to
help you’.
The session was closed off with a highly
energetic chant from a fellow activist in
the crowd chanting ‘If you discriminate, we
fight back, we speak out, and we stand up.
Roll up your sleeves and just do it!’ A true
activist’s words…
Sirka is with ARASA.
Friday • 27 July 2012 5
Friday, 27 July
08:30-10:30 Plenary: HIV in the Larger Global Health Context
(Live Streaming at GV Main Stage) Session Room 1
11:00-12:30 Getting to Zero Excuses: Understanding and Addressing
HIV-related Stigma and Discrimination Session Room 2
Culture, Law and Religion Session Room 9
Overcoming the Challenges of Marginalised Gender Identities
in Asia and the Pacific GV Session Room 1
15:15-17:00 Plenary: Closing Session Session Room 1
Sirka Amaambo
6 Friday • 27 July 2012
‘It feels like we have been here before
– another AIDS conference and
another session ‘relegated’ to the
Global Village, as the realities and
needs of lesbian, bisexual and other
women who have sex with women
and are still excluded from the main
conference programmes and the
discussions in the ‘big’ rooms’. These
were the sentiments expressed by
Mabel Bianco opening the session
on ‘building lesbian & WSW visibility
in the HIV response’ on Thursday in
the LGBTI Networking Zone.
The question ‘where are the
lesbians’ in the response to
HIV seems to remain a constant.
At a similar session at AIDS2010
in Vienna (and before at AIDS2008
in Mexico), there was a common
understanding that this ‘incredible
invisibility’ of lesbian, bisexual and
other women who have sex with
women in the HIV response is not
only related to homophobia, but
also to a lack of data on specific
prevention and treatment needs for
lesbian and other women who have
sex with women. And while we may
have not come far in addressing
homophobia since, there is now a
growing body of evidence about
the specific realities, risks and needs
of lesbian, bisexual and other
women who have sex with women.
Yet, women who have sex with
women are kept invisible in the HIV
response. The question is ‘why’?
The data discussed at the session
clearly shown how and why it is
imperative for lesbian, bisexual
and other women who have sex
with women to be ‘visible’ and an
integral part of the response to
HIV. A study exploring HIV testing
and HIV status among lesbian,
bisexual and other women who
have sex with women in Botswana,
Namibia, South Africa and
Zimbabwe revealed that 9.6% of the
women participating and knowing
of their HIV status (429) are living
with HIV. Linda Bauman from
OutRight, Namibia, who provided
an overview of the results, also
underscored that not sex with men per
se, but non-consensual sex (with men
and women) is a crucial risk factor for
HIV exposure and transmission.
The risk of HIV exposure and
transmission due to violence in its
various forms, including social and
institutional violence, as well as sexual
violence and rape, was echoed with
data presented by Gloria Carega from
ILGA LAC Mexico, highlighting that
lesbian, bisexual and other women
who have sex with women are at risk
of and exposed to violence and abuse,
because they are women and because
they are women who have sex with
women. Recognising the high levels of
violence and rape ‘targeting’ especially
lesbian, bisexual and other women
who have sex with women not only
in Mexico, but in many parts of the
world, it seems ironic, that although
violence against women, including
sexual violence and rape, has become more and more ‘visible’
in the response to HIV, the violence perpetrated against women
who have sex with women continues to be ‘silenced’ and
‘invisible’. Again, the question is ‘why’?
The ‘obvious’ answer would be: homophobia, and societal
‘refusal to accept’ that women’s rights include a woman’s
right to choose to be attracted to and have sex with another
woman. But then, we have seen progress in recognising the
role stigma (including stigma based on sexual orientation
and gender identity) plays in the epidemic, and a growing
inclusion of men who have sex with men in the response
to HIV. Yet, the ‘invisibility’ of women who have sex with
women remains. It is within this context that Maria Sjödin
from the Swedish Federation for Lesbian, Gay, Bisexual and
Transgender Rights raises the question as to the contributing
role of the international rights activists’ community may play
in upholding the ‘invisibility’ of lesbian, bisexual and other
women who have sex with women. While women are now
…women who
have sex with
women are kept
invisible in the
HIV response…
Special report:
The continuity of invisibility…
Johanna Kehler
Friday • 27 July 2012 7
Andrea Gleaves, a domestic violence training and outreach
specialist from the DC Coalition Against Domestic Violence,
spoke in the Women’s Networking Zone about the interception of
HIV and domestic violence. In 2010, Gleaves teamed up with the
National Network to End Domestic Violence, as well as national, state
and local level HIV organisations as the HIV/AIDS & Domestic Violence
Project’s efforts to integrate the two sectors and improve services
for women living with HIV, and survivors of domestic violence. HIV
researchers, advocates, and policy makers know that gender-based
violence both contribute and is a consequence of HIV. Gleaves’
focus on domestic violence in particular not only reinforced this
knowledge, but drew upon unique connections between the two
epidemics, as well as highlighted the significant strides being made
on the cooperation between the two related sectors in American
cities and around the world.
During training, the HIV counsellors and domestic violence service
providers attended workshops to enhance their knowledge on the
‘other sector’ and to create a common foundation of knowledge
across the two sectors. Gleaves points out that it is important
for women who work with domestic violence survivors to be
comfortable and knowledgeable when confronted with a situation
involving HIV and vice versa, saying that ‘it is impossible to talk about
domestic violence without talking about HIV’.
Quickly, commonalities between domestic violence and HIV were
distinguished and addressed. Perhaps the most notable similarity
between the two were the typical domestic violence ‘Power and
Control Wheel’ where the ‘spokes’ are the gateways or tactics to
domestic violence that include: economic abuse, male privilege,
sexual abuse, threats, blame, intimidation, and isolation. While the
stigma associated with a domestic violence survivor and someone
living with HIV may be different, there are many shared experiences
between the two, all of which are unique to women. Not surprisingly,
many of the domestic violence abusive tactics could be seen on the
women living with HIV wheel.
A positive consequence of these collaborations and cross training
is that the DC Coalition Against Domestic Violence, as well as other
shelters and domestic violence offices around the country, have
visuals of ARVs; so when a woman who experienced domestic
violence comes to them, they can identify the type of pill and
the medication she needs timely. This is but one example of the
potential changes that can be made when sectors partner-up and
systematically address the specific needs of women living with HIV
and women survivors of domestic violence.
Sierra is with the AIDS Legal Network, South Africa.
Local Voices:
Integrating sectors…
Sierra Mead
‘on the map’ of the HIV response,
women are responded to as a largely
‘heterosexual homogeneous’ group
and thus, realities, risks and needs of
women who have sex with women
are still not ‘on the map’. Maria also
reminded us that the ‘silence’ about
lesbian, bisexual and other women
who have sex with women in HIV
prevention and treatment policies
and programmes can no longer be
‘explained’ with a lack of knowledge
and evidence alone; it needs further
interrogation as to the social and
political determinants ‘justifying’
the continuous and systemic
‘invisibilisation’ of women who
have sex with women in the response
to HIV.
It seems ironic that while we are
talking about turning the tide for
women and girls and turning the tide
to end violence against women, the
voices and needs of women who have
sex with women remain ‘silenced’
and ‘invisibilised’. And as for looking
forward, Melbourne here we come;
and this time, the realities, risks and
needs of lesbian, bisexual and other
women who have sex with women
will be part of the main conference
programme and the discussions in
the ‘big rooms’. Without the visibility
of women who have sex with women,
turning the tide … and ending AIDS
will remain but a dream…
Johanna is with the
AIDS Legal Network, South Africa.
… nonconsensual
sex (with men
and women) is
a crucial risk
factor for HIV
exposure and
Supported by the Oxfam HIV and AIDS Programme
(South Africa) and the South Africa Development Fund
Editors: Johanna Kehler
E. Tyler Crone
Photography: Johanna Kehler
DTP Design: Melissa Smith
Printing: B&B Duplicators INC.
8 Friday • 27 July 2012
Luisa Orza In my opinion…
MIWA: Meaningful investment in women living with HIV
meet material needs as well as
empower women through skills
4. Ensure women’s access to
information: invest in legal literacy
and rights awareness among
women, especially women living
with HIV, including through
translation of relevant legal and
policy resources into local languages
5. Strengthen capacity among
implementers and policy makers
to effectively engage in two-way
learning and dialogue women living
with and affected by HIV
6. Invest in women’s HIV prevention,
care and support programmes
7. Bridge the disconnect between
national and local decision-making
processes to ensure women’s voices
are carried through from local to
national levels
The centrality and value of
involving women living with HIV
and other key affected women in
all aspects of the HIV response
has long been recognised.
The principle of engagement has
been codified in various political
commitments going back to the
coining of the principle of the Greater
Involvement of People Living with HIV
(GIPA) in the 1994 Paris Declaration,
and reiterated in the 2001 UNGASS
Declaration of Commitment, and the
2006 and 2011 Political Declarations.
Nevertheless, women living with HIV, and
other key affected women, continue to
face significant challenges and barriers to
accessing political spaces for meaningful
participation in, and to realising their
leadership. Moreover, these challenges
remain largely unchanged over the
last decade.
Women-and HIV activists have been
talking about the same things for so
long now, that GIPA (or better MIWA:
the meaningful involvement of women
living with HIV) fatigue must be setting
in. Yet, taking our eye off the ball, and
the back-slide occurs in a flash. Take
AIDS2012, where the planning failed to
include a woman living with HIV among
plenary speakers. The Make Women
Count movement was quick to respond
and push back, resulting in Linda
Scruggs’ extraordinary and powerful
presentation on Wednesday. But one
thing is clear: people would much rather
not reserve a seat at the table.
And the reservation of seats is not
enough. Engagement is not a simple
matter of turning up at a meeting.
To transform that seat into a place of
meaningful engagement and leadership
requires a serious and committed
investment of resources to ensure that
those, with seats, are truly representative
of those without.
Among others, issues that continue
to stand in the way of HIV-positive
women’s meaningful involvement and
leadership include: literacy – including
rights literacy, – language barriers, and
lack of access to information; insecure
livelihoods; stigma, discrimination and
violence against women living with
HIV at household, community, and
institutional levels; voluntarism, the
burden of care, burnout, and the lack
of recognition for the contribution
that grassroots women have made to
the HIV response, largely through the
investment of their own resources; lack
of specific skills to engage with policy,
budgeting, monitoring and evaluation
and accountability frameworks from a
human rights and gender perspective;
lack of funding to organise and engage;
and patriarchal gender norms, which
result in a heavy burden of domestic and
reproductive work, and underrate the
potential and value of women’s political
representation and leadership.
Securing a (lasting) place at the table
for women living with HIV is step
one. Beyond this, governments and
development partners must1:
1. Provide a range of accessible
funding options, including
core funding and seed grants
for women’s organisations and
2. Develop mechanisms, tools, and
processes to ensure the meaningful
participation of women living with
HIV in the planning and budgeting
processes of national AIDS strategies,
operational plans, and accountability
frameworks, as well as in monitoring
expenditures and results
3. Invest in training and capacity
strengthening for women’s
organising and leadership beyond
the delivery of care and support
services, to enhance engagement
in policy processes; and, promote
social protection mechanisms to
and leadership
requires a
serious and
investment of
8. Address cultural barriers, patriarchy and gender norms that prohibit
women’s engagement, including through
a. addressing the gender division of labour, so as to create time
and space in women’s domestic labour, for women’s effective
engagement in the public sphere
b. engaging men and boys to break-down gender norms/cycles,
and promote gender equality, and
c. sensitising men to the importance of women’s political
9. Work with women’s organisations and networks to define
benchmarks and articulate indicators of success for women’s
meaningful participation
10. Transform signatures into action: implement existing normative
frameworks that uphold women’s rights, and promote women’s
political representation
1. These standards for meaningful participation are drawn from a satellite session
at AIDS2012 on ‘Women Leading, Organizing and Inspiring Change in the AIDS
Response’ hosted by UN Women in partnership with UNAIDS, ATHENA Network,
Huairou Commission, and the Canadian International Development Agency.
Luisa is an independent consultant
and a woman’s rights advocate.