Project Description

Whats inside:
Special report:
Dreaming the
Feedback from
the Global
News from the
Dilemmas for
Women’s voices…
Locating lesbians
In her opinion…
It’s going to make
a change
In Focus…
Finally…A Microbicide Success!
IAS Vienna 2010 has represented
a series of major successes for
women. First and foremost, we
had the announcement today of
the first microbicide ever shown
to convincingly prevent AIDS in
women. Tenofovir Gel, applied by
a woman anytime in the 12 hours
before sex, and then again anytime
up to 12 hours after sex, reduces
HIV infection in women by at least
39%. At the IAS Conference in
Durban in 2000, there was a plenary
announcement of microbicide trials
which did not work. Now, ten years
later, it is very fitting that two of
the scientific organisers of AIDS
2000 in Durban, Quarraisha Abdool
Karim and Salim Abdool Karim
have announced the success of their
Microbicides were the dream of
Zena Stein and promoted with Anke
Ehrhardt by the Columbia University
HIV Center which has focused on
women since its inception in the
1980s. It was the product of feminist
visions and carried through by many
more feminists over the last 25 years.
Advocates for women pushed for
microbicides, when scientists working
on AIDS vaccines and treatment had
not even envisioned the problem of
‘methods women can use’.
This example illustrates that
scientific research is only as good
as the concepts which drive it. No
scientific method is the gold standard,
no matter how much it is randomised
and controlled, if there is no vision
behind it that reflects the needs of
the affected community. As I have
described in my recent book (AIDS,
Sex and Culture: Global Politics and
Survival in Southern Africa, Wiley-
Blackwell 2009), feminists have
struggled with AIDS research for a
generation, trying to frame questions
that address women’s prevention, safe
fertility and breastfeeding. A central
aspect of good science is generating
the questions that make sense in
people’s lives. Feminists have had to
fight continuously to frame the right
scientific questions for women in
AIDS. Once we have the questions,
we have to generate the best methods
to answer them – whether that be a
controlled, randomised trial or a
qualitative ethnographic case study.
In this respect, as the Town
Hall Meeting at the Women’s
Networking Zone on Monday
amply demonstrated, ‘evidencebased’
research has to reflect
thoughtful concepts and a variety
of appropriate methodologies, both
quantitative and qualitative.
There have been many victories
for women at AIDS 2010 in Vienna.
Mujeres Adelante Wednesday •21 July 2010
Daily newsletter on women’s rights and HIV – Vienna 2010
Ida Susser
2 Wednesday • 21 July 2010 Tracy Chapman sang about violence against women in the
background, as stark statistics on violence against women
appeared on the screen. Everjoice Win, speaking at the plenary
session on Tuesday, stressed and re-stressed that violence against
women and HIV were both pandemics that intersect in ‘deadly’
ways, and that the ‘gasoline’ that drives the HIV infection of women
was gender inequality. She also reminded the audience repeatedly
that women were human, not just mothers and wives.
While this is not new ‘evidence’, there are clearly too few actors
with capacity and political will to enforce state duties and to
address current policies and programmes that exacerbate the crisis
of violence against women and HIV. Women face violence in many
forms, as it is endemic, systemic and systematic. The statistics that
shock are only the tip of the iceberg, as so much violence goes
unreported by women and governments often do not
track prevalence.
There is an increasing trend to de-politicise the language around
violence against women. We need to re-instate the language of
gender-based violence as being directed specifically at women to
reinforce and sustain women’s position as unequal and structurally
restricting access to rights, services and choice. With de-politicised
language comes de-politicised interventions; gender-based
oppression is converted to the language of ‘vulnerability’. ‘We
need to re-assert that women are made vulnerable; women are not
intrinsically vulnerable’.
Heteronormativity prevails, heterosexual is the dominant ‘norm’,
and efforts to support this discourse permeate the world of HIV,
promote violence against women and situate women as mothers
and wives. Public health approaches to HIV largely ignore violence
against women as a core component that needs to be addressed
in counselling and testing programmes; ABC approaches persist
when ‘A’ and ‘B’ have failed and ‘C’ is unattainable for many
women, and health providers fail to recognise and address risks
around disclosure.
Everjoice stressed the need to recognise and respond to
women’s risks of violence, and that integration of services must
translate into the integration of violence against women. Since
we have the ‘evidence’, we need to use it, intensify the production
of gender-sensitive evidence, research the impact and cost
of violence against women, and continue to document and
disseminate what works for women.
Where are the resources? Since 1995 there has been a marked
decrease in gender-based violence programmes, as well as a
decreased focus on violence against. There are to few resources
across funders who often lack clear policy guidelines on how to
address HIV and violence against women and promote gender
equality. The establishment of the UN Women entity could be a
promising start.
So much more needs to be done with regards to HIV and AIDS
policies, responses and programmes that are more sophisticated
and dedicated to violence against women. This must happen
urgently, as it is central to an effective HIV and AIDS response for
women and girls.
Jayne is with the AIDS Legal Network, South Africa.
Stressing intersections… Jayne Arnott
The request for a gender breakdown in the
abstracts has become routinised, and this
request has also been added to the request
for papers in the Journal of the IAS. The
opening plenary on Monday morning
featured two women who have long been
active in AIDS advocacy, Vuyiseke Dubula,
General Secretary of the Treatment Action
Campaign in South Africa, and Anya
Sarang, President of the Andrey Rylkov
Foundation for Health and Social Justice
in Moscow, Russia. Such changes were the
result of over twenty years of organising
for the recognition of women’s agency and
women’s collective rights in the treatment
and prevention of AIDS.
Now, we cannot rest on our laurels –
we have to do better than 39% protection!!
Of course, there must immediately be
further trials now that we have turned this
corner. We must try combination products,
different dosages, different times of
administration and the use of a ring rather
than an applicator. However, from now
on, no woman should get less! Therefore, the placebo can no longer
be neutral.
So, the next challenge will be to ensure that the results of the
microbicide trials are transformed into practical benefit for women,
both in South Africa and beyond. Tenofovir gel has shown to do no
harm. In this large but impeccably implemented first trial among
nearly 1000 women, Tenofovir gel has been shown to reduce HIV
transmission in women. In addition, it also reduces infection of
Herpes (HSV2).
The gel should be accessible from now on to every woman who
would like to use it, as long as she is aware of its limitations. For
instance, a woman whose partner is HIV positive might choose to use
the gel. This microbicide needs to be produced and distributed as soon
as possible. As we all know, feminists and health advocates have the
next struggle ahead, and we need to educate ourselves and prepare to
mobilise to implement the findings, imperfect as they may be.
The South African government, not Gilead, owns this patent – will
they begin to plan to use this first microbicide that works? Perhaps
they will protect only 40% of women or maybe 50% of those who use
the gel – but women should be given the choice to use it – and that is
the challenge – will it be available AIDS2012 in Washington DC? –
Will it save lives now?
Ida is a Professor of Anthropology.
research is only
as good as the
concepts which
drive it…
News from the ‘margins’… Zena Stein and Ida Susser
The needs of IDUs:
Dilemmas for
Anya Sarang of Russia speaking
with courage and compassion
gave a vivid account of the
plight of millions of injecting
drug users worldwide, among
whom half are HIV positive and
many are women. Stigmatised
and often persecuted, they are
regularly denied treatment both
for their addiction and for AIDS.
Anya documented not only the laws among
32 countries that include death sentences for
drug users, but also the atrocities committed
against offenders in China, Indonesia,
Vietnam and Thailand. In Uzbekistan, for
example, a man was given 7 years in prison
for his stand against these harsh laws. In Iran,
the medical brothers Drs. Alexaei are in prison
for their efforts to treat drug users.
On the encouraging side, as a result of longterm
organising, in the US syringe and needle
exchange have just become legal, and in
Australia the humane management of
IDUs has virtually eliminated this source of
HIV spread.
On a sombre final note, a Russian, favouring
the current unyielding policy in his own
country, has recently been appointed to head
the UNAIDS agency responsible for IDUs.
Anya asked what is needed now – harm
reduction for the addicted person, peer
counselling, substitution therapy, needle
and syringe exchange, access to testing,
prevention and treatment. Clearly the next
step is to consider how to advocate for
harm reduction for women, which takes into
account their particular needs, their dignity
and their human rights.
Zena is an epidemiologist
of Columbia University.
Wednesday • 21 July 2010 3
News from the Global Village…
Transgender People
Worldwide, transgender people are one of the most affected
by the HIV epidemic. However, they are often neglected
by governments in their policies concerning prevention, care and
treatment of HIV and other STIs. This is no different in Latin America and
the Caribbean. Transgender people face an extraordinary amount of
violence and discrimination, fuelled by stigma. While, governments do
strongly affirm that they prioritise people’s health and well-being, they
reportedly do not work seriously or effectively on health issue, education
and justice. Such neglect especially affects already marginalised groups,
such as transgender people. It not only increases their vulnerability to
HIV infection, but also leaves them few options in terms of care and
treatment when tested positive for HIV. Often, members of transgender
communities in the region only reach hospitals when their immune
system is already extremely weakened.
Transgender organisations have played a key part in the response to HIV.
However, it is essential that governments stop ignoring transgender people,
and start to include them in formulating all policies that affect them, as well
as in their implementation. An effective rights-based approach is spelled with
meaningful community participation in all decision-making processes.
The Latin American and Caribbean Transgender Network
(REDLACTRANS) will lead a session in the Global Village that will discuss
the role of governments in ensuring the inclusion of transgender people
into healthcare systems. Presentations at this session will focus on the
legal aspects that transgender people face, the role of transgender
organisations in fighting HIV in the region, and on developing effective
strategies to address the needs of transgender people.
The session The Transgender Population in Latin America:
Increasing Active and Effective Participation in Protecting and
Promoting their Human Rights will be held Wednesday,
21 July, 15:30 to 16:30, Global Village Session Room 2.
Come and be part of the debate!
4 Wednesday • 21 July 2010 The need for such a movement
to support women living with HIV
across Europe has been born by the
initial findings of a survey carried
out among positive women living
in Europe and Central Asia over
the last few months to gain a better
understanding of how the epidemic
is playing out in the region. Of
the 165 survey respondents, only
14% were living openly with HIV;
54% had received no counselling
upon receiving their HIV positive
diagnosis, including 43% of the
English-speaking respondents;
about a third of the women had
experienced some form of genderbased
violence; and only half had
chosen to reveal their status to their
The more qualitative elements
of the survey produced evidence of
a range of mental health issues and
lack of support to address these. But
they also spoke about a range of
tools and resources for overcoming
these challenges, which underline
the need for networks. One German
speaking participant sums it up: ‘The
most support I got was from other
people living with HIV’.
Luisa is a womens rights and HIV
consultant and the WNZ coordinator
* Further results from the survey can be
found on
‘I’m surprised to be sitting here
alone’, said a bemused Andrea
von Lieven, from the speakers’
couch at today’s launch of a new
network for Women living with
HIV in Europe and Central Asia
(WECARe+). But her short-lived
solitude also spoke to one of
the needs behind the network.
‘Women who live openly with HIV
get pulled in so many different
directions – especially
at conferences like AIDS2010’.
Happily, Andrea was soon joined
on the couch by positive women
from Romania, Ukraine, Italy, The
Netherlands, the UK, and Germany.
WECARe+ is the brainchild
of Harriet Langanke, director of
the German organisation GSSG:
Gemeinnützige Stiftung Sexualität
und Gesundheit (Charitable
Foundation Sexuality and Health), and
positive activist Wezi Thamm. Their
efforts were supported by Abbott
Pharmaceutical Company, who have
funded the registration of the network
and enabled the set-up of the sevenlanguage
Women in Europe website
(, which will
provide vital on-going communication
support to the network.
The fledgling network has ridden
on the tide of momentum generated
by AIDS2010, but the conference is
just a start. It is important that the
network has its roots grounded in
real need, commitment and vision
for the network to carry this work
forward. So what do women want
from the network in the future?
‘I would like this organisation
to help us to not be invisible any
more’, said Silvia, a positive woman
originally from Mexico, now
living in The Netherlands. ‘So that
women be included and participate
in decision-making and policymaking’.
Isabelle Nunez spoke about
the need for solidarity and support
among women living with HIV,
which in lower prevalence countries
is not always easy to find. ‘I’m the
only openly positive woman with a
public position in Portugal and I feel
alone’. Conferences provide a rare
opportunity for Isabel to work sideby-
side with other positive women.
‘I came here and there was Wezi and
other women who support me and I felt,
oh, I’m ok now. That’s what networks
for positive women are for’.
Silvia Petretti, an Italian activist
now living in London has been
closely involved in the start-up and
development of PozFem UK – the
UK network of women living with
HIV since 2004.
Women’s networks are
incredibly important at so
many levels. Once you have
support from other women
in your same circumstances,
you find the strength and
inspiration to move on and
become vocal, to become
advocates and to stand-up and
claim your rights – and that’s
crucial if we want to create
a world where we are visible
and to reduce stigma and
discrimination – says Silvia.
…the conference
is just a start…
…that’s what
networks for
positive women
are for…
…create a world
where we are
Women’s Realities…
A new network for positive women
in Europe and Central Asia – WECARe+
Luisa Orza
Women’s Voices…
Locating lesbians in the response to HIV
Despite the obvious fact that HIV is
often a sexually transmitted virus,
stigma continues to render invisible the
sexualities of those most marginalised
by gender bias and heteronormativity.
According to activists who gathered on
Tuesday to discuss this marginalisation, in
the Human Rights Networking Zone,
the result of this stigma is that very
little is in fact known about the HIV
transmission and living positively
with HIV among lesbians and other
women who have sex with women
(WSM). None of the sessions in the
main portion of this conference
address the specific prevention or
treatment needs of WSW.
Panellists lamented the common
assumption that lesbians are not
affected by, or at risk of contracting
HIV, noting ‘changes in identity and sexual
practices’ among lesbian women, including
the use of sex toys and lesbian-identified
or bisexual women who have sex with
women and with men. In part because
there is little research on the subject,
only one case of sexual transmission
between women has been documented.
Nevertheless, this does not mean that
lesbians are free of HIV risk stemming
from diverse sexual practices, drug use, as
well as gender-based and homophobic
violence and rape.
Susana Fried, of the UNDP, pinned
the problem of invisibility not only on
homophobia, which renders lesbians
invisible in the world of HIV policy and
programming and more generally, but also
on an approach to sexuality in the public
health field that divides ‘sexual health’ and
‘sexuality’ from ‘reproductive rights’. She
argued that this unnecessary division
stems from a sexist blindness to the
importance of women’s sexual pleasure
and sexual choices. ‘Instead of focusing on
women’s sexual choices, we are too focused
on women’s right to refuse sex’.
A related theme was the importance
of focusing on ‘sexual practices’, in addition
to sexual identities, when educating
women about the risks of HIV. By doing
so, health information education – and
potentially research – can be inclusive
not only of lesbians, and bisexual women,
but also of trans women and trans men
of various sexual orientations, and go
beyond heteronormative definitions of sex,
which may even cloud epidemiological
and scientific studies of sexual practices
between women and men.
In addition to a lack of effective
research and information on the risks and
practices of WSW, lesbian women living
with HIV also face specific problems.
Isolation and lack of support are
significant threats to mental and
physical health, as is the stigma that
many lesbian and bisexual women
face in healthcare contexts. Lesbian
and bisexual women living with HIV
also face increased risk from sexual
violence and drug use.
This problem of invisibility
and isolation is particularly ironic,
as lesbian women have played a
strong role in supporting the rights
of gay men throughout the history
of HIV and AIDS advocacy. According to
one commenter from Argentina, political
mapping there has also demonstrated
the critical connecting role that lesbian
women play between feminist organisations
and LGBTQ groups, a core alliance in the
movement for human and health rights.
As it turns out, lesbians may seem to
be invisible at Vienna 2010, but for those
that look more closely, WSW can be found
at the centre of the global response to the
Kate is a writer and ethnographer based in
Durban, South Africa.
Wednesday • 21 July 2010 5
Kate Griffiths
Wednesday, 21 July
09:30-11:00 Sharing Lessons: HIV Positive Womenís
Networks as a Civil Society Organizing, Advocacy and
Mobilizing Tool Women’s Networking Zone
11:00-12:30 Improving Performance of
PMTCT Programmes Mini Room 5
11:15-12:45 My Body, My Womb, My Rights:
Ending Forced Sterilizations of HIV Positive Women
Women’s Networking Zone
14:30-18:00 Practical Tools: How Positive Women Can Get
Funding from the Global Fund to Fight AIDS, Tuberculosis and
Malaria Mini Room 5
15:30-16:30 Caused by the Refraction – Screening and
Discussion with the Film Maker and a Sex Worker Organizer
from Myanmar GV Video Lounge
16:30-18:00 Managing Multiple Identities:
Bridging Populations Session Room 5
17:00-18:30 Fighting Gender Stereotypes in Order to
Overcome the HIV/AIDS Pandemic in Central
and Eastern Europe GV Session Room 2
18:00-19:00 Women, HIV and Human Rights: Addressing
Property and Inheritance Women’s Networking Zone
18:00-19:30 Improving Access to Pregnancy Planning and
Reproductive Options for PLHIV Through Evidence-Based Policy
Development and Advocacy GV Youth Pavilion
19:30-20:30 Young Womenís Hour: Violence against Women
Women’s Networking Zone
´What have you done for HIV and
AIDS lately?´ That’s the question
posed by a panel of international
human rights experts and advocates
on the second day of the AIDS2010.
Moderated by Joseph Amon, the
Programme Director of the Health
and Human Rights Division of
Human Rights Watch, the special
session was largely a give-andtake
discussion between Annand
Grover, the UN Special Rapporteur
on the right of everyone to the
enjoyment of the highest attainable
standard of health, Morten Kjaerum,
Director, European Union Agency for
Fundamental Rights and Manfred
Nowak, UN Special Rapporteur on
torture and other cruel, inhuman
and degrading treatment.
While the conversation was
wide ranging enough to include
discussions on the sexual rights of
prisoners, the rights of drug users,
the role of sex workers, and the
relationship of national legislation
to international recommendations
and global funding agencies, the
consensus among the panel was
that more can be done at every
level to understand, promote and
implement rights-based approaches
to HIV policy. According to Grover,
…when we are here, at a
conference like this, we can
all agree…but there is a hostile
reception to these ideas in the
real world….the UN is a very
conservative body.
While drawing on the
successful example of human
rights-oriented prevention
strategies and community
engagement represented by sex
worker organisations in India,
Grover pointed out that in many
parliaments and town halls around
the world, and even within some UN
agencies, ´sex work´ and ´sex worker´
are controversial terms that many
find morally offensive.
Panellists also pointed to the
successful rights-based approaches
to HIV prevention among prisoners
and drug users. In Spain, prevalence
rates as high as 50% plagued prison
populations, efforts to provide
condoms and sterile works helped
to dramatically curb the problem.
While these approaches have been
repeatedly demonstrated to be more
effective than regimes which require
and assume abstinence, Nowak
stressed that prison officials are often
unable to overcome the seeming
contradiction between prison rules
that forbid sex and drug use in
prisons and policies which provide
the means and the knowledge
for prisoners to engage in safer
For his part, Kjaerum
emphasised the need for human
rights accountability, pointing to
both the potential and the lack of
implementation of the human rights
portions of the European Union’s
Lisbon Treaty, which sets standards
for the zone. Enforcement of human
rights standards encounter a number
of complications, including the
need for functioning legal systems
in countries where they are to be
implemented, as well as government
perceptions that the ´crisis´ of high
prevalence and transmission rates
justify extreme measures, such as
criminalisation and mandatory
testing. Grover pointed to the
example of Lesotho; one of the
planets nations most severely
affected by HIV, where ministers
have called for mandatory HIV tests.
The problem with such policies,
he argued, and with violations
of human rights in general, is
that HIV testing is useless in the
absence of effective treatment and
that ´treatment…requires literacy.
Treatment literacy and education
require the active consent´ of people
living with HIV.
The importance of such
engagement also extends to the
community level. Model laws,
Grover pointed out, are often
ineffective, because they do
not have input and ownership by
communities and those
most affected.
A significant problem which
emerged from the discussion is
the role of funders in enforcing
rights. There remains debate as to whether or not prevention
and treatment funding should be linked to human rights
conditionalities, for example in mandatory drug treatment
centres where torture and other inhuman treatment may
be taking place, or in nations where dictatorial governments
routinely violate the basic rights of citizens. For funders,
contributions may go to support further infringement, while
funding bans may leave the worlds most marginalised in
increasingly desperate situations.
In their concluding remarks, each speaker was asked to
comment on the phrase ´those who say it cannot be done
should get out of the way of those who are doing it´, and to
identify achievements in human rights once thought to be
impossible. Grover pointed to the change in public attitudes
around sex work across Asia, in societies once thought too
conservative to accept rights-based approaches to the this
issue, while Kjaerum pointed to shifting global attitudes
toward LGBT people.
Nevertheless, the question remains; how long will global
human rights remain an impossible dream?
Kate is a writer and ethnographer based in Durban,
South Africa.
…more can
be done at
every level to
promote and
approaches to
HIV policy…
Special reports:
Global Human Rights: Dreaming the Impossible?
6 Wednesday • 21 July 2010 Kate Griffiths
Wednesday • 21 July 2010 7
Human rights protections are key to effective responses to HIV
and AIDS and law reform processes are integral to securing
rights in the context of HIV. However some policies and law reform
processes seem to be determined more by public health needs
than the need to secure human rights.
In a session on law reform in the context of HIV on Monday,
we heard from speakers on a range of law reform initiatives
in the context of HIV, and the complexity and challenges
within these processes that are often fraught with risks and
unintended outcomes. Inputs covered law reform processes
ranging from addressing women’s property rights, women
and the criminalisation of HIV transmission, responses to antihomosexuality
legislation, drug use harm reduction policies and
sex workers rights in the context of law reform.
The complexities and compromises were very evident in
the presentation by Nandinee Bandyohpathy, an independent
consultant who has worked with sex workers in India and
Bangladesh. Nandinee posed some critical questions around sex
workers’ rights in the context of law reform and HIV. Rights are
absolute and need no justification for public health gains, yet in
the context of HIV ‘marginalised’ groups perceived to be at risk are
routinely violated. Is it right or strategic to frame sex worker rights
within a public health framework when the logic of public health
approaches can often infringe on rights; giving the example of the
scaling-up of routine and/or compulsory HIV testing that can lead
to gross violations of sex worker rights. At the same time, using the
language of public health is often the only platform that affords a
degree of safety to sex workers in advocating for law reform and,
therefore, a strategic route to take.
Universal entitlement to access prevention, treatment and
care calls for investment in sex worker led HIV and AIDS responses,
interventions and programmes, yet many funders withdraw
when policies and priorities shift, as is the case with addressing
generalised pandemics.
Advocacy initiatives to decriminalise sex work can also result
in further harms when law reformers refuse to recognise sex
work as work – for example, decriminalising soliciting but then
criminalising clients under the guise of affording protections to sex
workers! And if the criminal law is not used, there are a plethora of
other laws in place to violate sex workers’ rights.
Sex work must be decriminalised in all its aspects in order for
human, health and labour rights and protections to be realised.
Jayne is with the AIDS Legal Network, South Africa.
Rights protections or compromises… Jayne Arnott
Women IDUs – why so many barriers when there are so many
needs? was the title of the workshop session on 20 July. A panel of
four women, who were all previous drugs users and had negative
experiences with the health system in their home country, shared
their experiences with the health system. One particular story stood
out to me, which was shared by 31 year old Aleksandra Volpina
from Russia.
Aleksandra is living with HIV and used to be a drug user, which
made her particularly vulnerable to discrimination. Initially, she was
told she could not have children due to her ‘drug addiction’; so she
terminated her first pregnancy on her own. About one year later, she
was told that she ‘had AIDS’, which she only thought was something
that could occur in Africa. Her lack of knowledge on the disease had
repercussions, when she became pregnant again one year on. She
decided to have an ‘abortion’, due to her ‘AIDS diagnosis’, as she
knew that was ‘something people die of’; so she was not in a position
to give birth.
This time she decided to get medical assistance for the ‘abortion’,
and no one objected or gave her other information on HIV and
pregnancy. However, getting an actual clinic to perform the
procedure proved to be a challenge. At the prenatal clinic, they had
kept information in the file of both Aleksandra and her mother, and
thus, did not wish to perform the procedure, due to her HIV status.
Alternatively, Aleksandra searched for a private clinic where she
paid US$500 to get the procedure done. Here, she finally received
information on HIV and treatment, started on medication, and
has now been living with HIV for ten years. She concluded her
presentation by blissfully sharing that she now is pregnant…
Although not an isolated case of abuse women who use drugs
experience in the health system, it highlights the ‘power’ of access to
information and knowing one’s rights.
Sabrah is with the AIDS Legal Network, South Africa.
Regional Voices…
So many barriers
Sabrah Møller
Supported by the Oxfam HIV and AIDS Programme
(South Africa)
Editors: Johanna Kehler
E. Tyler Crone
Photography: Johanna Kehler
DTP Design: Melissa Smith
Printing: invecon
8 Wednesday • 21 July 2010
In her own words…
In conversation with Leah Okeyo*
* Based on an interview conducted by Lauren Suchman
were made since the last International
AIDS Conference, Leah noted that
much progress has been made over
the past two years on some of the key
issues that were the focus of protests
in Mexico City. For example, one
protest focused on lifting travel bans
for people living with HIV, and both
the United States and China recently
lifted these travel bans. In Vienna,
Leah would like to see more focus
on equal access to treatment, noting
the disparities in access between
countries in the Global North and in
the Global South. She also noted, ‘we
are still very much behind’ on women’s
rights, and she would like to see more
attention paid to electing women
to political office, so that they can
represent women’s interests at the
national level.
When asked why she came
to Vienna, Leah responded that
her main goal is to gather up-todate
information on HIV care and
treatment. As Leah pointed out,
new developments in the field
give hope to people living with
HIV, and ‘that hope, it keeps us going’.
Although Leah recognised that new
developments are slow to reach rural
Kenya, she said that it is left to herself
and her colleagues to advocate for
access to new treatments, because:
…we know that it is up to us to
push, but we know that if we
push, at the end of the day it will
come to us.
Leah Okeyo, Founder and
Chairperson of Jacolo Rural Women’s
Response to HIV, Migori, Kenya
Leah is the Founder and
Chairperson of Jacolo Rural
Women’s Response to HIV in Migori,
Kenya. Leah founded this organisation
after testing positive for HIV six years
ago. Following her diagnosis, Leah
found that she had little access to
information and she also lacked the
companionship of other women living
with HIV. So, she formed the Jacolo
Rural Women’s Response to HIV, and
also joined World Pulse in order to
engage with a broader community
and gain access to information about
Leah’s organisation initially
employed 16 women, but it has
grown to a group of 60 positive
women over the past six years, and
now serves about 3,000 to 4,000
people in rural Kenya. The women
conduct advocacy activities in
local villages by speaking about
HIV transmission and prevention in
churches and clinics. Leah pointed
out that most people in Kenya’s
rural areas do not have access
to newspapers, radio, or TV, so
they rely on representatives from
organizations, like hers, to bring
them information about health
and HIV. Since poverty is a major
risk factor for contracting HIV, and
the health of people living with
HIV suffers due to poverty, Leah’s
organisation also conducts poverty
alleviation activities by helping
women to buy chickens for poultry
farming, and connecting them with
banks that give micro-credit loans.
Of this work, Leah remarked, ‘not that
it’s going to make their lives perfect,
but it’s going to make a change’.
Leah herself is proof that small
changes can amount to a big
difference. In addition to founding
the Jacolo Rural Women’s Response
to HIV, she has also trained in HIV
counselling and testing, so that she
can provide these services to the
women her organisation reaches.
Referring to her own achievements
while living with HIV, Leah noted
during our discussion ‘I’m a living
example to all the rest’, suggesting
that she serves as a model and guide
to other women in her community
living with HIV.
Leah is also an active member of
the World Pulse online community,
which she credits with giving her
access to cutting-edge information
about HIV, and also for making her
feel part of the global community
of people living with HIV. According
to Leah, being a member of World
Pulse is useful because participation
in this online forum allows people
living with HIV to ‘realise that we are
not the only ones facing challenges’,
and Leah herself feels supported
and connected to information.
Furthermore, Leah noted that her
connection to World Pulse has been
useful for her organisation as well.
Not only does participation in the
community enable Leah and her
colleagues to network and share
resources, but it was due to her
desire to join World Pulse that Leah
(as well as some of her colleagues)
learned how to use the internet and
send emails. She pointed out, ‘you get
educated along the way’ to becoming
an AIDS advocate.
Discussing the advances that
…’you get
along the way’
to becoming
in the field
give hope to
people living
with HIV…