Project Description

This fourth (and, for now, the last) issue in the series of special ALQ/Mujeres Adelante editions on women’s rights and HIV looks back at the 2010 international AIDS conference in Vienna and shares some of the conversations and highlights that transpired at the conference. remaining true to our core question as to whether or not women’s rights, realities and needs are indeed at the centre of the AIDS response, the various articles in this edition explore the extent to which women and women’s rights, realities and needs were at the centre of discourse at Vienna 2010.

October 2010
Special edition
incorporating
MujereS adelante ALQ
A Publication of the AIDS Legal Network
Mujeres Adelante A newsletter on women’s rights and HIV
Held between July 18 and 23 at the Reed Messe
Wien, AIDS 2010 gave members of the HIV
and AIDS research and advocacy communities
a window on the European epidemic, which in turn called
attention to the criminalisation of sex work and drug use and
the need for increased focus on human rights.
This rights focus culminated in ‘The Vienna Declaration’1,
a statement signed by more than 17,000 scientists, advocates
and policy makers to date, which declares that ‘policy should
be based on science, not ideology’, and which calls for an
end to the global ‘War on Drugs’, arguing that existing drug
policies are in many instances both unscientific and a source
of human rights violations around the world. This declaration
also coincides with a victory for health advocates in the
United States, as a decades-old ban on federal funding for
needle-exchange programmes has been rolled-back under the
Obama administration.2
For advocates of a rights-based approach to HIV health
More visible than ever before…
Looking Back on Vienna 2010
Kate Griffiths
The 18th annual International AIDS Society (IAS) Conference
held this year in Vienna reflected both celebration of major
accomplishments in the field of medical research and AIDS policy,
and a somewhat apprehensive view of the future of HIV and AIDS
research and policy amidst a global economic crisis and shifting
donor priorities.
Mujeres Adelante 2 EDITORI AL
Special edition incorporating MujereS adelante – October 2010 ALQ
This fourth (and, for now, the last) issue in the series of special
ALQ/Mujeres Adelante editions on women’s rights and HIV
looks back at the 2010 International AID S Conference in
Vienna and shares some of the conversations and highlights that
transpired at the conference. Remaining true to our core question as
to whether or not women’s rights, realities and needs are indeed at
the centre of the AIDS response, the various articles in this edition
explore the extent to which women and women’s rights, realities and
needs were at the centre of discourse at Vienna 2010.
And while most contributors tend to agree that there has been
progress in that human rights were ‘more visible than ever before’ and
‘present and alive in a large number of panels, workshops and satellites’,
there is also the recognition that there are a number of remaining
challenges, as well as continuing omissions, in our discourse and
responses to women’s rights and HIV, as ‘women’s needs and rights in
many cases remain marginal to policy and research agendas’ and the
progress made ‘does not imply that the road ahead is an easy one’.
Looking back at Vienna 2010, this edition introduces a ‘snapshot’
exploring both the progress and the stagnation (as presented and
discussed at the conference), continuously raising the question as
to the adequacy of the AID S response to women’s rights, realities
and needs.
One of ‘highlights’ of the conference has been the release of the
CAPRI SA study results indicating a microbicide success, and the new
and long-awaited opportunities these results present to women and
women-controlled HI V prevention options. Welcomed with cheers
and celebrated worldwide as ‘a win for HIV prevention, women’s rights
and scientific discovery’, this ‘success’ also initiated critical debates as
to how to move forward and ‘where to go from here’ to ensure that
Editorial…
Continued on page 4
1. Microbicide Success… Page 38
New opportunities for women
Zena Stein and Ida Susser
2. Requirement for
stronger evidence… Page 43
Comment on Stein and Susser
Sharon Hillier and Ian McGowan
3. Validation is essential… Page 44
Comment on Stein and Susser
Mitchell Warren, Emily Bass
and Manju Chatani
4. How much protection Page 46
is enough…
Comment on Stein and Susser
Erica Gollub
5. Confidence limits… Page 48
Comment on Stein and Susser
Bruce Levin
6. HIV prevention
for women…when? Page 50
Comment on Stein and Susser
Louise Kuhn
7. A careful weighing
of priorities… Page 52
Comment on Stein and Susser
Tim Farley and Liz McGrory
In this issue
Mujeres Adelante 3
treatment, policy and research priorities,
the declaration and the conference theme
were a reflection of the increased emphasis
on human rights as a critical framework for
approaching health within the field, after a
generation of advocacy toward that end, while
at the same time an opportunity to reflect on
a number of still-growing threats to rights-based policies and to
people living with HIV.
The conference theme ‘Rights Here, Right Now’ was a
welcome acknowledgement for advocates, community members
and researchers who have long been focused on the intersections
between women’s rights, LGBTQ rights, prisoners rights, poor
peoples’ rights, and the rights of youth and effective HIV and
AIDS policies. With ’rights´ as the unifying theme, once
marginalised issues, such as the sterilisation and criminalisation
of women with HIV, the rights of intravenous drug users,
sex workers, and LGBTQ people, were more visible than
ever before in the convention’s main sessions, plenaries and
workshops presenting the latest research. Speakers once
relegated to ‘the margins’ of past IAS conferences often made
double appearances this year in the Women’s Networking
Zone, as well as in mainstream sessions inside the central
convention hall. Speakers at main panels included rights
advocates, such as
Vuyiseka Dubula,
General Secretary of
the Treatment Action
Campaign (TAC)
in South Africa,
Anya Sarang, President
of the Andrey Rylkov
Foundation for Health and Social Justice in
Moscow, Russia, and Paula Akugizibwe of
the AIDS and Rights Alliance for Southern
Africa (ARASA). People living with HIV,
women, young people, and those from the
communities and nations most affected
by HIV are speaking for themselves, in
conference venues, and are at the centre of the debate.
In addition to this focus on human rights approaches to HIV
and AIDS policy and treatment, rights advocates celebrated the
major victories for the right to health of people living with HIV
that have taken place since the 2008 IAS conference in Mexico
City. Most notably, advocates cheered progress toward ‘universal
access’ to highly active antiretroviral therapy (HAART), with
more than 5 million of those who need treatment now receiving
it. This is in part due to the dramatic shift in South Africa’s
stance toward HAART since 2008.
In South Africa, home to one of the world’s largest and most
severe HIV and AIDS epidemics, AIDS policy under President
Thabo Mbeki was clouded by denialism and austerity from the
highest levels, with top government officials and many local
service providers publicly disputing the scientific consensus that
the human immunodeficiency virus (HIV) causes the collection
of infections known as AIDS, and the resulting impact on the
most economically and socially active section of South Africa’s
population, as well as high infant mortality in the country.
Over the last three years, the policy has slowly shifted during
transition to new leadership, with HAART first focused on the
prevention of mother-to-child transmission, toward a policy of
access for all people living HIV with CD4 counts below 200,
and below 350 for pregnant women and those co-infected with
tuberculosis.3 This broader shift in policy and response has
ALQ October 2010 – Special edition incorporating MujereS adelante
…policy should be based
on science, not ideology…
Looking Ba ck on Vienna 2010
…both unscientific and
a source of human rights
violations around
the world…
Mujeres Adelante 4 EDITORI AL
Special edition incorporating MujereS adelante – October 2010 ALQ
the ‘concept’ of new HI V prevention
opportunities for women will become
‘reality’ – in a timely and safe manner.
While some argue that ‘proof of concept
is not enough to declare victory’, as
‘stronger evidence’ is required and
further ‘validation is essential’, there are
also questions raised as to ‘how much
protection is enough’ for women to truly
benefit from these new opportunities
and when HI V prevention for women
will become reality. Underlying this
debate is the call for microbicides ‘to
be made immediately available’ and
the acknowledgement that ‘while we
continue the debate, women continue
to be infected and die’. Although quite
contradictory at times, the common
theme in this debate seems to be the
request that ‘research truly moves us
onwards from where we are now’ and
that women’s prevention realities and
needs are to be the focus of both the
discourse and the way forward.
And as for stagnation and the
realisation of how much remains
the same, ‘why the silence’ on sexual
rights and ‘where are the lesbians’ in
the response to HIV continue to be
questions raised again and again.
The realities and needs of ‘invisible
sexualities’ are still not integrated into
‘mainstream’ debates and discussions
on women’s rights and HIV, and thus
continue to be under-represented in
‘formal’ conference proceedings, as
‘stigma continues to render invisible the
sexualities of those most marginalised by
gender bias and heteronormativity’. Trans
women were one of the many groups
raising their anger and frustration
about the neglect to integrate their
specific realities and needs into
research, policy and programming.
And while the continuing invisibility
and marginalisation greatly impact on
the adequacy of the AIDS response,
it also reflects the extent to which
human rights are indeed at the centre
of the discourse and response. And as
long as trans women are not ‘heard’ in
the main sessions of a conference, and
remain ‘relegated to the Global Village
and offered a stage to do drag shows’,
we arguably fail to move forward in
our ‘rights-based’ approach to HIV.
Criminalisation in its various forms
and its impact on HI V risks and related
rights abuses, as well as the adequacy
and effectiveness of the AIDS response
in addressing and/or perpetuating the
criminalisation, has been the centre of
debate and advocacy for quite some
time. Prevailing stigma, discrimination
and other violations of rights on a
person’s (actual or perceived) HIV
status; continuing judgement of
peoples’ sex and sexuality, sexual
choices and desires; and the ongoing
prejudices against and exclusion
of the ‘other’ and anyone perceived
to be ‘different’ are but a few of the
realities that fuel the criminalisation,
legally and socially, of sex, sexuality
and HI V, and threaten human rights –
both within and outside international
conference proceedings.
‘Criminalisation’ was the topic of
numerous formal, as well as informal
sessions at Vienna 2010. Recognising
that the persistent criminalisation
of sex, sexuality and/or HIV not only
undermines the effectiveness of the
AID S response, but also threatens
human rights in the context of HIV
and AID S; the need to oppose both
legislative trends and common
Mujeres Adelante 5
ALQ October 2010 – Special edition incorporating MujereS adelante
already had a dramatic impact on the lives
of people living with HIV, with increased
anecdotal reports of decreasing social stigma
and increasing grassroots acceptance of
HAART. The treatment is already having
a dramatic and discernable impact on the
number of children born with HIV, and is
expected to reduce transmission rates in the
general population.
In addition to this achievement for the global HIV and
AIDS community, rights advocates – in particular, feminists
– celebrated a major new research achievement which
highlights both the importance of, and the need for, further
scientific research that centres on the rights of women. IAS
2010 saw the announcement of study results demonstrating
the partial effectiveness of Tenofovir Gel, the first preventative
microbicide. The treatment, WHICH reduces HIV infection in
women by at least 39%, can be applied vaginally as many as
12 hours prior to sex and up to 12 hours following sex.4 Along
with female condoms, which have been recently improved,
availability of the Tenofovir gel would double the number
of women-controlled methods for preventing transmission of
HIV. This need for such methods is increasingly being recognised
as researchers note
the connections
between gender-based
violence, female
d i s emp owe rme n t ,
unprotected sex and
HIV transmission in the
context of generalised
epidemics.
But, despite this progress towards
human rights for all people living with HIV,
voices for human rights, both from the dais
and in the form of chanting, dancing and
protest, warned of continued, serious threats
to autonomy, health and security that are
picking up steam worldwide.
Women’s rights and risks
Women’s rights and HIV intersect in the realms of biology,
social life, health policy and law. Despite increased global
attention on the rights of women in recent years, women are
still being disproportionately impacted by HIV and AIDS, and
women’s needs and rights in many cases remain marginal to
policy and research agendas. This marginalisation was reflected
in women’s experiences shared in the Women’s Networking
Zone (WNZ) and Global Village, as well as at a number of main
sessions inside the convention hall.
Women are at higher risk of transmission; research suggests
that in addition to biological vulnerability to the disease, it is
women’s social vulnerability that increases their risks. Factors
that increase women’s vulnerabilities of becoming infected
with the virus include poverty, youth, and exposure to genderbased
violence. Young women are among the fastest growing
populations of people living with HIV.5
In some countries, such as the Congo, Uganda and Zimbabwe,
new research and reports cited at AIDS 2010 focus on women’s
vulnerability to rape, violence and HIV used as a political tool in
the context of war and violent social disruption. Despite these
documented vulnerabilities, women are still largely without access to
any form of protection that is under their own control, instead relying
on male partners for protection, further increasing their risk.
…increased emphasis on
human rights as a critical
framework for approaching
health…
…the need for, further
scientific research that
centres on the rights of
women… Looking Ba ck on Vienna 2010
6 Mujeres Adelante Special edition incorporating MujereS adelante – October 2010 ALQ
EDITORI AL
practices of criminalisation in all
its forms; and the subsequent call
for the decriminalisation, as well as
the protection and promotion of a
person’s right to autonomy, dignity
and non-discrimination – regardless
of a person’s sex, gender, sexuality,
gender identity, choices and desires
and/or HI V status – has been a common
argument across continents and issues
in most of these sessions.
However, it also became clear
that although many would endorse
and support the call to decriminalise
HI V in principle, the specifics of
the various interrelations, links and
causalities between gender, power,
sex and criminalisation are not as
easily supported and endorsed across
continents and sessions, as this would
imply opposing and subsequently
challenging the very same fundamental
principles – the ‘social order’ – of our
perceptions and understanding of
what is ‘right’ and what is ‘normal’. And
it is at this intersection of advocating
for what is ‘right’ and ‘ethical’ and
what is ‘accepted’ in law, policy and
practice that human rights are often
not at the centre of the debates;
that the limitation of an individual’s
rights often seem ‘justifiable’ for the
protection of the many; and that the
specific realities, needs and risks of
women (in all their diversities) seem
to have become an ‘acceptable’ status
quo – one that needs to be taken into
account and be recognised in policies
and programmes as an ‘issue apart’ in
need of urgent attention.
And after a week of debates and
activities on ‘rights here, right now’
and ‘women’s rights here, right now’
the question remains of what we have
achieved, who we have reached, and
whose lives we have impacted upon.
And while specific answers may differ
for each and every one of us, what
seems to remain is a certain reluctance
to ‘touch the untouchable’, to challenge
the status quo, and to truly place
human rights at the centre of debate,
policies and actions.
An effective response to particularly
women’s risks, realities and needs
is now more than ever the key to
ensure that rights become realities
for all people; that commitments
and promises are translated into
actions beneficial for everyone;
and that legislative trends and the
common practice of criminalisation
are opposed and transformed into
the decriminalisation of sex, sexuality
and HIV.
Many would agree that ‘there is more
than enough evidence’ on the multiple
interrelations between women’s rights,
realities and needs and women’s
specific risks and vulnerabilities to HIV
and human rights abuses and that now
is the time to move beyond ‘discourse’
and ‘to prioritise actions’ – for women
to say NO to criminalisation and for all
of us to say NO to the criminalisation of
women and women’s sexuality.
Johanna Kehler
Mujeres Adelante 7
ALQ October 2010 – Special edition incorporating MujereS adelante
Looking Ba ck on Vienna 2010
At the same time, government policies
have often focused on women as vectors of
disease, rather than victims, with policies
that target women without accounting
for their rights. In one panel devoted to
the increasing criminalisation of people
living with HIV, Johanna Kehler of the
AIDS Legal Network (ALN) noted that
new laws and court precedents that
criminalise HIV transmission around the world harm
women through selective enforcement, and because such
laws, ironically, disproportionately impact on people
living with HIV who are aware of their status. Women are
more likely than men to access healthcare, including HIV
treatment and testing, and are, therefore, more likely to be
made legally liable for HIV transmission, despite a general
female disempowerment in the realm of HIV prevention.
This criminalisation of HIV transmission also applies, in
some cases, to mother-to-child transmission of HIV through
antenatal transmission or through breastfeeding.
This combination of health policy focus on women
living with HIV, when combined with a
disregard for women’s human rights, has
led to medical abuse of women living with
HIV in the context of coercive treatment
policies. Women in countries as diverse as
Namibia and the USA report being coerced
into sterilisation when seeking medical
attention for HIV while pregnant, seeking
termination of pregnancy, or simply giving
birth.
The growing threats of
criminalisati on and violence
This criminalisation of HIV exposure
or transmission looms large as a continued
and increasing threat to the rights of people
living with HIV, and to successful public
health strategies targeting the epidemic. 63
countries have HIV-specific laws, 27 of which
are on the African continent.6 Advocacy
organisation GNP+ has documented more than 600 instances of
HIV transmission prosecution in more than 80 countries, with
numbers growing. The United States has the largest number of
cases, while African nations, such as Tanzania and Mozambique,
are testing grounds for model laws that hold people living with
HIV criminally responsible for HIV transmission. European
countries are also experiencing an increasing number of
successful prosecutions of HIV exposure and transmission.
In addition to the criminalisation of HIV transmission, the
criminalisation of sexual and gender minorities, and sex workers,
violates human rights and undermines public health efforts to
adequately address the HIV epidemic in countries worldwide.
Such criminalisation, particularly of LGBTQ
people, is increasing across the globe. 85
countries around the world now have laws
on the books ‘outlawing’ homosexuality
to varying degrees, ranging from bans on
‘sodomy’ to ‘displays’ of public affection
between same-gender couples. These laws
are punishable by long prison sentences and,
in the case of a proposed Ugandan Bill and
policy in Iran, by death.7
…continued, serious threats
to autonomy, health and
security…
…women’s needs and
rights in many cases remain
marginal to policy and
research agendas…
Mujeres Adelante 8 Looking Ba ck on Vienna 2010
Special edition incorporating MujereS adelante – October 2010 ALQ
While imprisonment is itself a risk factor for HIV, such laws
may have a greater negative impact by LGBTQ communities
going underground
and increase members’
HIV risks by reducing
their access to
housing, employment
and healthcare,
increasing poverty, and
undermining public
health interventions.
This atmosphere of legally sanctioned marginalisation of
sexual and gender minorities may also help to increase stigma and
the violence associated with it. Reports of increasing incidents
of ‘curative’ rape of lesbians and transgendered men have
continued to emerge across Southern Africa, while transgender
women and gay men continue to face sexual violence and
exploitation across the globe. This violence increases LGBTQ
people’s vulnerabilities to HIV and human rights abuses.
Meanwhile, lesbian women, alongside transgender men and
women, who experience much stigma remain largely marginal
to the policy and research agenda in HIV and AIDS.
While the focus of the ‘Vienna Declaration’8 is on the
criminalisation of drug users and sex workers, the message
from AIDS 2010 and the Global Village is clear; the scientific
analysis of the importance of human rights to effective health
policy embodied in the document applies more broadly to the
criminalisation of people living with HIV, women living with
HIV, and LGBTQ people. Just as criminalisation ‘drives’ drug
users ‘away’ from seeking health services, it will drive away all
criminalised groups. ‘Stigma’s’ impact on drug users’ access to
care and treatment along with their vulnerability to infection is
similar to that of other stigmatised groups. Billions are being
wasted around the world on ineffective policies that include
criminalisation.
Economic crisis and health impacts
This wasted funding on ineffective policies is particularly
problematic in a time of economic crisis. The embrace of
once-controversial human rights approaches within the global
HIV treatment and policy community did little to stifle the
now traditional sound of chanting, protest and song at IAS
2010 in Vienna. While demonstrations highlighted a variety of
significant issues relating to HIV and AIDS research, treatment,
and policy, from LGBTQ rights to the rights of those co-infected
with TB and HIV, the largest and most vocal protesters were
those targeting donor countries, including the US, for ‘broken
promises’ on AIDS funding. Protesting organisations ranging
from ACT-UP to the Treatment Action Campaign (TAC),
called attention to decreasing funding and interest in HIV and
AIDS. The Obama administration in particular, has diverted
AIDS funding to initiatives that focus aid on general health
infrastructure and maternal child health.
Former President ‘Bill’ Clinton, a keynote speaker at AIDS
2010, and now head of his own foundation, argued that a debate
about the importance of general funding versus AIDS-specific
funding was one that
engaged in ‘false
dichotomies’, since
both kinds of health
funding should be
mutually reinforcing.
Nevertheless, since
July 2010, HIV and
…disregard for women’s
human rights, has led to
medical abuse of women
living with HIV…
…violates human rights and
undermines public health
efforts…
Mujeres Adelante 9
ALQ October 2010 – Special edition incorporating MujereS adelante
AIDS researchers and advocates have
seen drastic cuts to the pool of available
resources, which threaten to undermine
the recent progress in responding to the
epidemic.
PEPFAR flat lines as global fund
is gutt ed
At the conference, advocates noisily noted that the US
commitment to global HIV treatment is faltering in the face
of economic crisis. In May 2010, Barak Obama unveiled his
Global Health Initiative (GHI), which declared a shift in
emphasis from HIV funding to general health funding. Funding
for the President’s Emergency Plan for AIDS Relief (PEPFAR)
was extended for one year, with a $3 billion boost in funding,
that sector analysts noted was insufficient to increase interventions
to the levels required to maintain the progress seen in recent
years. 10 years of
steadily increasing
AIDS funding
has produced a
17% decrease in
transmission, a rate
groups like TAC hoped
would be substantially
improved by wellfunded
support for
South Africa’s new
policy approach.9
Early this month, activists’ fears of a global AIDS funding
shortfall were further confirmed when the Global Fund’s
‘replenishment’ meeting failed to raise the full $20billion needed
to maintain current funding levels. At just $12
billion, funding to poor nations and NGOs that
provide life sustaining treatment will inevitably
fall short, with advocates predicting that the
funding shortfall will reduce the number of
people receiving antiretroviral drugs by 3.1
million, while an almost equal number will
not receive needed TB drugs, and almost half a million pregnant
women will be deprived of PMTCT services.10
Donors argue that these cuts in funding are attributable not
only to changing health priorities, but the global economic crisis
and an increasing and necessary emphasis on cuts to government
services and funding worldwide. Cuts may have an impact, not
only by holding back necessary improvements in treatment
access, but also by reducing resources for new avenues of
research, such as vaccines and/or further microbicide trials.
Reframi ng the debat e on HIV and huma n rights
– Making rights a reality
As they celebrate the increasing acceptance of a human
rights framework for HIV policy, researchers, service providers
and activists at AIDS 2010 argued that a second paradigm shift
is needed to halt the epidemic and the inequalities that fuel it.
Rather than fighting for limited resources in debates pitting
maternal child health against HIV treatment, or women’s’ rights
against the rights of LGBTQ people, activists should instead
reframe the debate. In one session, entitled ‘Price Check: How
Much is Needed for Gender and AIDS?’ panellists suggested that
people concerned with women’s rights and HIV ask not ‘what
can we do with the little money we are given?’, but ‘what do we
need?’ and then ‘how much will it take to get it?’. Across the
spectrum, advocates argued for a similar approach to other key
…drastic cuts to the pool of
available resources, which
threaten to undermine
the recent progress
in responding to the
epidemic…
…it will drive away all
criminalised groups…
Looking Ba ck on Vienna 2010
10Looking Ba ck on Vienna 2010
Special edition incorporating MujereS adelante – October 2010 ALQ
priorities; Zena Stein, one of the researchers behind the recent
Tenofovir gel success similarly asks the key question ‘where’s
the will?’11 for funding prenatal interventions and education on
exclusive breastfeeding that is known to be extremely effective
in preventing maternal-child transmission. Similar questions can
be asked about the research necessary to develop and implement
existing and new women-controlled prevention strategies.
True implementation of a human rights approach to HIV
research, treatment
and policy making
will require not only
a recognition of
the importance of
human rights and the
decriminalisation of
women, people living
with HIV, LGBTQ persons, intravenous drug users, and sex
work, but also a rethinking of the scarcity model, which pits the
needs of diverse constituencies against one another.
Vienna 2010 and the Vienna Declaration represent an
important step forward in a generation-long push for a rightsbased
approach to HIV and AIDS, with the successes of
this approach reflected in increased access to treatment and
decreasing rates of transmission in some of the world’s most
affected countries and communities. At the same time, progress is
threatened by global leaders’ response to the economic crisis,
which includes billions in bailouts to stabilise the financial
system and fund punitive policies, along with a sense of
resignation toward funding cuts for health, education and other
services. In this environment, HIV and AIDS resources are
seemed to be shrinking, and the dream of rejecting a scarcity
model seems far-fetched.
As we move towards 2012 and Washington DC , it is
important to remember that making human rights and gender
inequality central elements of the HIV and AIDS agenda also
seemed unlikely just ten years ago. We should recognise what
activists have learned through decades of responding to HIV
and AIDS: that affected communities can be their own best
advocates when it comes to shifting the debate toward political
will to make rights a reality. As Jennifer Gatsi, Director Namibia
Women’s Health Network, states ‘by empowering a woman, we
can see that change is coming’.12
FOOTNOTES:
1. The Vienna Declaration. July 2010. [www.viennadeclaration.com/thedeclaration.
html]
2. Sharon, S. 2009. ‘Ban Lifted On Federal Funding For Needle
Exchange’. In: NPR News. 18 December 2009.
3. Treatment Action Campaign. 2010. ‘What are the new ART treatment
guidelines’. April 2010. [www.tac.org.za/community/files/file/
TreatmentLit/2010/HIVTreatmentGuidlinesBookletEnglish.pdf]
4. Susser, I. 2010. ‘Finally A Microbicide Success!’ In: Mujeres
Adelante, 21 July 2010.
5. World Health Organization. 2010. Gender Inequalities and HIV.
February 2010. [www.who.int/gender/hiv_aids/en/index.html]
6. Arnott, J. 2010. ‘Where HIV is a Crime, Not Just a Virus’. In: Mujeres
Adelante. 23 July 2010.
7. Varner, B. 2010. ‘AIDS Fight Targets Laws Against Homosexuality,
UN’s Sidibe Says’. March 16, 2010. [www.businessweek.com/
news/2010-03-16/aids-fight-targets-laws-against-homosexuality-un-ssidibe-
says.html]
8. The Vienna Declaration. July 2010. [www.viennadeclaration.com/thedeclaration.
html]
9. Boaz, P. 2010. ‘Washington Debates PEPFAR Funding Ahead of
Global Fund Meet’. In: IPS News. 2 October 2010.
10. Treatment Action Campaign. October 2010. ‘Rich Donors Have Failed
the Global Fund’. [www.tac.org.za/community/node/2949]
11. Stein, Z. & Susser, I. 2010. ‘Will and Resources’. In: Mujeres
Adelante. 23 July 2010.
12. Gatsi, J. 2010. ‘Women are very powerful advocates…’. In: Mujeres
Adelante, 18 July 2010.
…a second paradigm shift
is needed to halt the
epidemic and the
inequalities that fuel it…
Mujeres Adelante Kate Griffiths is a writer and ethnographer based in
Durban, South Africa. For more information and/or
comments, please contact her at kategrif@gmail.com.
Mujeres Adelante
Sophie Strachan
There is a great need to gather
sufficient information
around sexual practices
of individuals with more than one
gender, and to support the lesbian,
bisexual and transgender communities
in mobilising around the invisibility
of women’s sexual diversity. This
invisibility will continue to deny
LBT women collective and effective
responses, and services, to HIV/STI
and AIDS.
As an HIV positive lesbian, an
acknowledgement of our needs and heightened visibility planted
a seed of hope. To meet and talk with many other positive
lesbians and bisexual women was not only significant, it also
was very apparent that there is a large community of positive
women globally needing visibility and recognition to overcome
the isolation and silence that so many of us can experience.
I have spent the last four years facilitating a group for positive
lesbians in London, United Kingdom. After two years, we finally
managed to secure some funding for our work, which, at the time,
felt like a significant achievement. However small our numbers,
we had effectively raised visibility and reached women who had
lived in isolation for almost 20 years,
with visible mental ill-health, because
they felt unable to speak to health
professionals through fear of further
discrimination. We reached women
not only on a national level, but also
internationally. We (Positively UK)
are the first HIV charity in the UK
to provide specialist support for this
community of women.
So much more work needs to be
done to give us a more truthful picture
of just how much of a fundamental
place the lesbian, bisexual and
transgender communities have in
the face of this global pandemic. And hopefully, AIDS 2012 in
Washington DC will be the conference where the realities and
needs of LBT women will be fully recognised and new study
findings about HIV risks and vulnerabilities of lesbian, bisexual,
and transgender people be at the centre of the debate.
11
ALQ October 2010 – Special edition incorporating MujereS adelante
A seed of hope…
A seed of hope…
Reflection on Vienna
The Lesbian community received some recognition at this year’s World AIDS Conference – although
not nearly enough – which raised awareness about the fact that this is a group indeed affected by this
global pandemic; just that, thus far, they have not been recognised enough as such.
Sophie Strachan is a case worker at Positively UK. For
more information and/or comments, please contact her
at sstrachan@positivelyuk.org.uk.
Mujeres Adelante 12Women in the AIDS response
Special edition incorporating MujereS adelante – October 2010 ALQ
Alexandra Garita
Beginning with the commitments made at the
International Conference on Population and
Development in Cairo in 1994, and increasingly over
the past 16 years, the international community has
recognised that providing a broad constellation
of health services in a single location will ensure
a higher quality of care and positive health
outcomes. For women, that means ensuring access
to comprehensive sexual and reproductive health
services in one place.
Consider, for example, the circumstance of an
HIV positive woman in rural Botswana. In
Botswana, which has the second highest HIV
prevalence rate in the world, most new infections occur in
women. In order to obtain treatment, she must travel
30 kilometres by foot to a U.S.-funded clinic. The woman
must travel another 50 kilometres to find a clinic that offers
contraceptives that will enable her to control her own fertility,
or receive screening to detect cervical cancer, a disease that
disproportionately affects women living with HIV. Both clinics
require separate staffing, infrastructure and overheads.
Currently, there are a number of global health initiatives
that prioritise the strengthening of health systems. The
US Global Health Initiative will seriously invest in womencentred
approaches that can help provide for better sexual and
reproductive health outcomes, and leverage significant support
from other government donors and multilateral partners. The
International Health Partnership is trying to build strong health
systems with co-ordinated investments in disease-specific
responses such as HIV, in a number of countries, primarily in
Africa. Specific health-related initiatives, such as the Global
Fund to Fight AIDS,
Tuberculosis, and
Malaria, as well as
maternal health,
family planning
and child health
initiatives, also need
to examine how far
they will go to expand
their mandate to
include broader health system issues.
Recently, increased attention has been given to scaling
up support for maternal and child health, given that the
Millennium Development Goal 5 on improving maternal health,
Doing something right…?1
Women in the AIDS response
…for women, that means
ensuring access to
comprehensive sexual and
reproductive health services
in one place…
Mujeres Adelante 13
ALQ October 2010 – Special edition incorporating MujereS adelante
Women in the AIDS response
is the least likely to be achieved by
the year 2015. Although reducing
maternal mortality ratios and
providing universal access to
reproductive health should become a
greater priority, narrow and technical
interventions, such as emergency
obstetric care and contraceptive
supplies, in themselves, will not
achieve improvements in maternal,
and therefore child health. Women
need to be treated with care and respect, have access to an entire
package of services,
and have their human
rights protected, in
order to achieve any
of the Millennium
Development Goals. In
addition, governments
must also recommit
to achieving universal
access to prevention, treatment, care and support of HIV/AIDS
(MDG 6), if women are to have a true chance at leading just
and healthy lives. Comprehensive approaches that invest in the
long-term, sustainable capacity of the health system to provide
adequate care for women, and their newborns, are required.
Civil society’s meaningful participation in building stronger
health systems is crucial to both better health outcomes and
greater accountability on the part of policy makers. The
UNAIDS Agenda for Accelerated Country Action for addressing
women, girls, gender equality and HIV is currently being rolled
out and presents an opportunity for civil society, the UN system,
governments, and all relevant stakeholders to direct AIDS
programming for women.
The Agenda contains possible actions that governments can
take to ensure that women can access a package of integrated
services for sexual and reproductive health, HIV, and tuberculosis.
National AIDS responses must also prioritise financial and
programmatic actions that uphold the rights of women and young
people, and address the discrimination and stigma that often
leave them vulnerable to infection. These investments must
include comprehensive sexuality education for young people in
…invest in women-centred
approaches that can help
provide for better sexual
and reproductive health
outcomes…
Mujeres Adelante 14Women in the AIDS response
Special edition incorporating MujereS adelante – October 2010 ALQ
and out of schools; a strong national programme to prevent and
respond to female-initiated HIV prevention methods, such as
female condoms; microfinance and social protection schemes
that strengthen women’s economic positions and reduce their
vulnerability to HIV; and programmes that engage men and
boys in the fight for gender equality.
The world is at a pivotal point of defining concrete actions
to transform their funding and policies into tangible changes in
women’s lives. Women across Asia, Africa, and Latin America
know what is needed and
what works. Access to
sexual and reproductive
health services is
integral to good health
for men, women, and
young people, and
underlies our ability to make headway
in confronting other health issues as
well. Foreign assistance donors and
countries where they are shaping
programmes to integrate and invest in
sexual and reproductive health services
means taking steps to end the political
stigmatisation of these programmes
and focus instead on the real-life
health benefits.
All donors, including the United
States and the United Nations, need
to do more to increase investments in sexual and reproductive
health services, including comprehensive sexuality education;
support bold diplomatic programmes for the human rights
of women; and engage local organisations led by women
and youth.
FOOTNOTE:
1. An earlier version of this article was published in the Mujeres
Adelante on 18 July 2010. Garita, A. 2010. ‘Women’s Realities: Doing
something right for women in the AIDS Response?’. In: Mujeres
Adelante, 18 July 2010, p4. [www.aln.org.za]
…taking steps to end the
political stigmatisation of
these programmes…
Alexandra Garita is the Programme Officer, International
Policy, at the International Women’s Health Coalition.
For more information and/or comments,
please contact her at agarita@iwhc.org
Mujeres Adelante 15
ALQ October 2010 – Special edition incorporating MujereS adelante
Susana Fried
Expa nding the lens of violence against women Sexual violence is so palpably evocative and egregious
that it generates energy and attention. The challenge
is that it also runs the risk of being sensationalised
in ways that mask nuance, and,
sometimes, make the real individuals
either invisible or as victims without
agency. It has always been much more
difficult in the context of human rights,
and now in the context of HIV, to look
at the broad scope of gender-based
violence and then to understand sexual
violence as a component of it.
In this context, it is important to
understand that it is not only sexual
violence that places women (and people,
in general) at greater risk of HIV. Other
forms of violence intersect with HIV – placing women and
others at risk, as well as having a distinct and serious impact
on women and others who are HIV positive – and targeted for
violence and discrimination because of their real or perceived
sero-status. One extreme form of the violence against women
living with HIV is, for example, coerced sterilisation. But we
don’t always talk about coerced sterilisation as a form of genderbased
violence. On another front, fear of violence may keep a
woman from getting tested or getting treatment. Sometimes the
fear or fact of violence is used to force women to share their
ARVs. But these issues often get cordoned off from each other
as separate, and as a result they are
not always part of a larger discussion
around gender-based violence and
HIV (though there are certainly many
women’s rights, human rights and HIV
organisations that take an integrated
and rights-based approach). When
this happens, we do a big disservice to
the analysis, to the action, and to the
potential partnerships that might be
created by looking to the full scope of
gender-based violence in the context
of HIV.
Using a rigorous gender-based analysis also forces us to
look at the experience of men who have sex with men and trans
people, and, in particular, to understand how their vulnerability is
increased by the fear or reality of violence. And as with women,
the experience of being HIV positive is always inflected with the
A rigorous gender-bas ed analysis…
A rigorous gender-based analysis…1
On the issue of violence against women, I find it interesting to watch how the issue of violence is being taken
up in the world of HIV. From the perspective of someone who has worked on the issue for many years and from
a variety of angles, I see the HIV community repeating some of the steps and showing some of the tensions
that also took place when GBV came onto the human rights agenda in the late 1980s and early 1990s. Then,
as now, we see that it is easier to get attention paid to sexual violence.
Mujeres Adelante 16A rigorous gender-bas ed analysis…
Special edition incorporating MujereS adelante – October 2010 ALQ
fear and reality of violent reprisals against them, because they
are gay, lesbian, or trans and HIV positive.
Moving the conversati on forwar d on
GBV and HIV
The Outcome Framework for the UN Joint Programme on
HIV/AIDS gives a priority to working with women and girls,
with a particular focus on addressing gender-based violence –
acknowledging the intersection of the two – and this will certainly
present opportunities
for moving the agenda
forward in a crossmovement
and multisectoral
way. UNDP
will also be engaging in
specific work on GBV –
with all women and girls, as well as with men who have sex
with men and trans people – and frames these in the context of
human rights, as part of the HIV Practice’s broader mandate to
work on human rights, gender and sexuality diversity and, more
broadly, UNDP’s mandate to work toward gender equality. So,
for example, this includes supporting efforts to integrate GBV
into national AIDS strategies and plans, to addressing violence
against sex workers.
At the global level, the UN Secretary General’s Unite to
End Violence Campaign presents an important opportunity,
especially because it has not yet fully taken up the issue of HIV
with respect to gender-based violence. This is a good moment
for bringing more
HIV content into that
campaign – especially
in the context of
the Millennium
Declaration, the
MDG Summit, and the search for programming with multi-
MDG impacts. Despite the best efforts of many individuals,
organisations and networks, it is still the case that in many
places HIV movements, women’s rights movements, sexual and
reproductive health and rights movements, LGBT movements,
and violence against women movements are still not talking
with one another enough. The UNITE Campaign is a process
that has emerged in reference to women’s rights and anti-GBV
movements, and it is an important place to move forward more
attention to HIV in this platform.
The Vienna IAC is a valuable moment for those who
work on women and HIV to continue the process of meeting
together and moving discussions forward toward, for example,
the MDGs. As I mentioned, there is a push to look at cross-
MDG strategies…and looking at violence against women as a
cross-cutting approach
to addressing gender
inequality, at the same
time that it is linked to
HIV and to women’s
health. Maternal health
and maternal mortality,
…opportunities for moving
the agenda forward…
…movements are still not
talking with one another
enough…
…either invisible or
as victims
without agency…
Mujeres Adelante 17
ALQ October 2010 – Special edition incorporating MujereS adelante
for example, in combination with HIV, is another realm where
violence places women at risk of maternal ill health.
We need to continue to create spaces where we can be
creative and think in new ways – Vienna is this space and the
Women’s Networking
Zone is such a space
– it is a good moment
to highlight successful
or new strategies and
good lessons for the
MDGs and for the
Universal Access
Review in 2011. There is a strong community present
(including HIV, women’s health and rights and LGBT) and it is
a very important opportunity to determine how to move these
conversations forward.
Reconciling the evidence base
On the one hand, there has not been enough attention
to generating a robust evidence base on women and girls in
epidemiological terms – and on the other, there is a strong push
from people who work on women and HIV to expand what
‘counts’ as evidence.
In the human rights
field, evidence is based
on documentation and
analysis of patterns
and testimonies that
echo across the world as evidence. There is a strong push to
create more space for human rights style documentation
and analysis as credible evidence in the context of HIV and
public health.
Human rights folks say that one human rights abuse is one
too many and requires action. It is not tracking numbers but
patterns. If we say ‘Rights here, Rights now’, how do we bring
these different versions of what is the evidence that triggers a
reaction into better alignment? If AIDS 2010 is a conference that
has human rights as its theme, it is a good time to take up this
discussion in a rigorous and clear way – for moving the AIDS
response forward, for ensuring that it is a gender-transformative
movement.
FOOTNOTE:
1. An earlier version of this article was published in the Mujeres
Adelante on 20 July 2010. Fried, S. 2010. ‘Special Report: A rigorous
gender-based analysis’. In: Mujeres Adelante, 20 July 2010, pp6-7.
[www.aln.org.za]
A rigorous gender-bas ed analysis…
Susana Fried is a Senior Gender Adviser at UNDP.
For more information and/or comments,
please contact her at susana.fried@undp.org.
…we need to continue to
create spaces where we can
be creative and think in new
ways…
…expand what ‘counts’
as evidence…
Mujeres Adelante 18Ensuring sa fety, security and autonomy
Special edition incorporating MujereS adelante – October 2010 ALQ
Jayne Arnott
Gender- based violence was the focus of the oral
poster session entitled ‘Ensuring Safety, Security
and Autonomy: Why must we overcome genderbased
violence?’ on Wednesday, 21 July 2010.
Michaela Leslie-Rule introduced findings of a participatory
research study that engaged a group of Tanzanian women
around defining the language of love, intimacy, sexuality and
violence. Leslie-Rule explored how women’s responses revealed
that inter-personal violence was very much a private issue and
women participating in the study presented with some tolerance
for inter-personal violence. When exploring what types of
physical and sexual encounters were considered to be violent,
the severity of the physical injury seemed to be the determining
factor. Women also spoke in a manner that seemed to indicate
an expectation that it was normal to experience some amount of
force or coercion from partners in sexual encounters. This was
not always experienced
as violence.
Women spoke
about sexual agency
and desire using
proverbs and allegories
that are passed down
from grandmothers
and women elders in the community. It is taboo for mothers
and daughters to discuss issues related to sex. This type of
information sharing presents opportunities for interventions
that could address inter-personal violence and reduce the risk
of HIV, for example, through reaching grandmothers and elders
who are passing on sexual information to ‘shift’ stories in ways
that can better equip women to articulate female sexuality and
sexual desire. Leslie-Rule noted that it is often women’s lack of
sexual knowledge and sexual agency that can lead to violence
in sex.
Gender equality is viewed predominantly as a goal that the
government must work towards, and placed in the public sphere
with women articulating the need, for example, for education and
economic equality and this is prioritised over gender equality
in the private sphere. Women can perpetuate gender norms that
support gender inequality and this limits opportunities for men
and women to be co-creators of tolerant environments.
If gender equality is perceived as being something that
the public sphere has to address, then the question is how can
governments and public services strengthen their policies and
programmes to integrate and promote gender equality both
within the public and the private sphere.
The session ended on the note that there is more than
enough evidence regarding the links between gender violence
and HIV, the intersections, and the bi-directionality. It is time to
prioritise action!
FOOTNOTE:
1. An earlier version of this article was published in the Mujeres
Adelante on 20 July 2010. Fried, S. 2010. ‘Special Report: A rigorous
gender-based analysis’. In: Mujeres Adelante, 20 July 2010, pp6-7.
[www.aln.org.za]
…there is more than enough
evidence…it is time to
prioritise action!…
Ensuring safety, security and
autonomy…1
Jayne Arnott is the Social Policy Researcher at the
AIDS Legal Network, South Africa.
For more information and/or comments,
please contact her at advocacy@aln.org.za.
Mujeres Adelante 19
ALQ October 2010 – Special edition incorporating MujereS adelante
Ra ising the human rights agenda…
Sonia Correra
As is well-known, International AIDS conferences
are gigantic gatherings that cannot be assessed as
a totality. Despite their scale
and complexity, in the past, a
number of International AIDS
Conferences have projected a
compelling image that would
synthesise the policy climate
and agenda for years to come.
As is also well-known, the
development of anti-retroviral
drugs became the historical
mark of Vancouver in 1996,
while in Durban in 2000 the
extension of access to such
medications in resource-poor
parts of the world began
to become a global policy
priority. In Toronto in 2006,
the emphasis on evidencebased
prevention announced
the current scenario of increasing resources
being invested into medical male circumcision
programmes and the use of ARV as a prophylactic,
while opposing views on the ABC approach
to primary prevention signalled an increasing
polarisation of policy responses to the HIV epidemic.
In light of this trajectory, it is not trivial that, in Vienna,
human rights was the title and the main theme of the
conference. In fact, it is somehow troubling that it has
taken so long for the AIDS mainstream to fully incorporate
human rights as a non-negotiable
perspective in the design of the
responses to the epidemic. This
breakthrough, though late, was made
possible because many voices situated
at the margins, such as HIV positive
persons, feminists, LGBT activists
and intellectuals, sex workers,
a cluster of social scientists and
even a few biomedical researchers,
have been, for many years, raising
the human rights agenda in AIDS
policy debates.
The colourful demonstration
on July 20th that went through the
Burgring before gathering at the
Hofburg was the remarkable result
of these ongoing and rather invisible
efforts. But the AIDS and Human
Rights March should also be placed against the backdrop of
history. Firstly to recall that in 1938, Hitler paraded through
the same Burgring when Austria was incorporated in the Third
Reich (the Anschluss). But also to say that for those who have
been part of the UN 1990 ‘sex saga’ it was simply thrilling to
be walking in front of the Austrian Parliament, while the crowd
Raising the human rights agenda…
My views on Vienna
Mujeres Adelante 20Ra ising the human rights agenda…
Special edition incorporating MujereS adelante – October 2010 ALQ
was happily shouting ‘sexual rights are human rights’. Most of
us who engaged in the closed-room negotiations in Cairo and
Beijing could not have imagined that fifteen years later sexual
rights would be spiralling in the streets.
It should also be mentioned that the AIDS and human
rights agenda was present and alive in a large number of
panels, workshops and satellites, including plenary sessions
where Meena Seeshu spoke about sex workers’ rights and
Everjoyce Win about gender violence, human rights, and HIV,
and Carlos Cáceres, to mention but a few key moments. Most
importantly, key main obstacles to the full realisation of human
rights of those affected by, or those potentially vulnerable to,
HIV were also addressed, in particular criminalisation of samesex
relations, sex work, and drug use, which was the topic of a
number of sessions. It is also remarkable that for the first time
in history of the AIDS conferences the intersection between
HIV, ‘abortion’, and criminalisation was addressed in at least
two formal panels (and not exclusively in the Global Village, as
used to happen in the past).
A major step has therefore been made that must be applauded
and appraised. However, this does not imply that the road ahead
is an easy one, as the conditions of the world are not exactly
favourable for the respect and promotion of human rights at
large, or sexual rights in particular. It is not therefore surprising
that one of the very first sessions of the Vienna Conference,
sponsored by UNAIDS,
was titled: A human
rights- based approach
to prevention: Mission
Impossible?
In regard to the
feminist presence,
agenda and visibility – in
addition to the integration
of ‘abortion’ rights in the
HIV and AIDS policy
agenda, which is crucial
– a series of smart and
productive conversations
took place at the
Women’s and the LGBT Networking Zones, and at a number of
panels organised at the Global Village. Some interventions also
happened in the exhibition area, such as the ‘find the clitoris’
contest, or the daily vulva award, promoted by the Latina
feminists, which was, by far, the most joyful experience I had
in Vienna.
…raising the human rights
agenda in AIDS policy
debates…
…troubling that it has
taken so long
for the AIDS mainstream
to fully incorporate
human rights…
Sonia Correra is with the ABIA AIDS and Sexuality Policy
Watch, Brazil. For more information and/or comments,
please contact her at scorrera@abiads.org.br
Mujeres Adelante 21
ALQ October 2010 – Special edition incorporating MujereS adelante
Sexual rights and HIV prevention
Jayne Arnott
Sexual rights as stand alone rights in the context of HIV
prevention seem to have slipped out of the human
rights discourse in relation to HIV and AIDS. For
effective HIV prevention approaches we need to engage with,
and talk about sexuality, support and promote sexual rights,
and advocate for the right to sexual information and the right
to sexual choices.
Claudia Ahumada, from the World AIDS Campaign, was
one of the presenters at a satellite session on ‘Sexual Rights and
HIV Prevention‘, on 20 July 2010. She started her presentation
by noting that this was the only stand-alone session at the
conference on sexual rights! We really need to challenge the
‘lip service’ to integrating sexual rights into HIV and AIDS
responses.
Why is it that we are not supporting women living with
HIV to exercise their sexual rights? We should be outraged that
positive women are being subjected to gross rights violations in
relation to having sex and making (or not being able to make)
reproductive choices, with violations ranging from dissuading
women from having children through to forced abortion and
sterilisation practices. Why the silence? If we cannot talk about
sexuality, support sexual choices, and integrate these rights into
HIV and AIDS responses, how can we begin to address HIV and
AIDS prevention interventions, programmes and services that
work and respect human rights?
Posing the question of ‘What do we mean by meaningful
youth participation and what hinders us from reaching this?’,
Ahumada talked about what youth need in relation to sexual
education and services, and argued that adults continue to make
assumptions about what youth need, which often leads to barriers
to access to relevant information and services, including HIV
prevention services.
Ahumada further elaborated on a series of impractical laws
regarding access to sexual information and services based on the
age of consent that are in place across the globe and that impact
greatly on youth’s ‘ability’ to access HIV prevention and to make
informed sexual choices. In Chile, for example, if you are under
14 years old, you cannot consent to sex and if you do, it is then
considered statutory rape, including sex between peers. The
law further states that anyone under the age of consent, seeking
information or services around sexual and reproductive health
within the public health service, must be reported to the police.
So how do we reach and engage youth in informationsharing,
promoting sexual rights, safer sexual activity and sexual
autonomy within a climate of criminalisation, as well as measured
and controlled access to sexual knowledge and services.
FOOTNOTE:
1. This is an excerpt of an article published in the Mujeres Adelante on
22 July 2010. Arnott, J. 2010. ‘Special Report: Why the silence?’.
In: Mujeres Adelante, 22 July 2010, pp6-7. [www.aln.org.za]
Why the silence…1
Sexual rights and HIV prevention
Jayne Arnott is the Social Policy Researcher at the
AIDS Legal Network, South Africa.
For more information and/or comments,
please contact her at advocacy@aln.org.za.
Mujeres Adelante 22Women and HIV in Eastern Europe
Special edition incorporating MujereS adelante – October 2010 ALQ
Kate Griffiths
Eastern Europe is currently the region on the
planet where rates of new HIV infections are rising
dramatically, with a 66% regional increase since
2001. Ukraine and Russia are the most severely
impacted, while treatment access among Eastern
European countries is far below necessary, with
less than a third of those who need it receiving
antiretroviral therapy.
While intravenous drug use remains the primary
mode of transmission in the region, some
experts fear that the epidemic is on the verge
of making the switch to a generalised heterosexual epidemic,
which could place many more lives at risk. Sexual transmission is
already the source of 42% of infections, with the sexual partners
of drug users and sex workers the most at risk. As a result of
this trend, increasing numbers of women are
contracting HIV, in addition to being affected
by their partners’ status. In some countries in
Eastern Europe, including Ukraine, women
now make up nearly half of the population of
people living with HIV.
While the pandemic in Europe may
include its own unique features, as
Katarzyra Palerjanik argued, women, and
women with HIV ‘have the same problem in
every country’, disempowerment, violence,
stigma and discrimination. Women also face increased biological
and social risk of contracting HIV, with young women especially
vulnerable worldwide.
According to Dr. Iatamaze Veruamvivi, director of the
Women’s Centre, the epidemic in Georgia is linked to these
regional factors, as well as to regional migration, both in terms
of immigration from higher prevalence countries to lower
prevalence nations, but also because as these nations make their
transition from communist systems to capitalism, increasing
levels of migrant labour have helped to spread HIV. In Georgia,
this has resulted in 2,300 cases of which 25% are women.
In addition to difficulty accessing treatment, basic prevention
measures are also seriously lacking. Service providers report
very low demand for condoms, while sexual education
is limited or unavailable in most countries. According to
Zhara Malyilyan of Armenia, one high school principal, when
asked why sexual education is not provided, answers ‘the less
they know the better’.
Mayilyan also explains that gender norms
and stereotypes make it particularly difficult
for women to protect themselves from HIV.
Women are generally expected to marry
their first sexual partners, while unmarried
men are likely to visit sex workers. Married
women and sex workers are both unlikely to
negotiate condom use. In one survey, women
who were asked if they had ever experienced
spousal or partner rape, most responded that
they felt that providing sex on demand was
…service providers report
very low demand for
condoms, while sexual
education is limited or
unavailable in most
countries…
Women’s rights before it’s too late…1
Women and HIV in Eastern Europe
Mujeres Adelante 23
ALQ October 2010 – Special edition incorporating MujereS adelante
Women and HIV in Eastern Europe
their ‘duty’. Most women living with HIV are infected through
sex with male partners. These realities indicate that women
are socially disempowered; in Armenia, there are no elected
women leaders.
These conservative gender norms are not ‘traditional’ in the
sense of being timeless and ancient, instead more conservative
social realities have emerged in Eastern Europe as a result of the
transition, as well as the rise of fundamentalist religious trends,
including Christian and Muslim organisations that oppose the
de-stigmatisation of sex, condoms, sex work, drug use and
people living with HIV. These movements have also helped to
isolate and disempower women, as they push for subordinate
roles for women and limitations on women’s sexual health and
reproductive rights.
A further complicating problem for people living with HIV
in Eastern Europe is the deterioration of public infrastructure as
part of the transition, including declining healthcare systems.
This means that access to healthcare is limited to all citizens,
while people living with HIV face stigma, including rejection
from clinics where doctors and clinic staff fear that if they admit
patients living with HIV, their existing clients will abandon the
clinic. In some instances women with
severe uterine bleeding were turned
away from ambulances and hospitals,
due to their HIV status.
Women living with HIV in Eastern
Europe face dual discrimination,
as people living with HIV and as
women. This can include workplace
discrimination, where women with
HIV are socially isolated and often
forced out of jobs. For women living
with HIV whose partners die of AIDS,
the situation is often particularly grim.
Facing rejection by their in-laws,
they are likely to loose
their inheritance, their
homes and often their
children. The attitude is
summarised in a saying
which is translated
as ‘why would I now
want a stranger in
my house’?
Women who are also intravenous drug users or sex workers
can be triply discriminated against. Women in these positions
are seen by men, from police to healthcare workers to family
and friends as not having rights. Roma women with HIV are
…promoting women’s rights
as a critical intervention…
Mujeres Adelante 24Women and HIV in Eastern Europe
Special edition incorporating MujereS adelante – October 2010 ALQ
likewise in the situation of being triply discriminated against
and are also socially isolated. They may also face increased risk
of HIV and violence in that they live largely as migrants.
Finally, young women are particularly at risk, largely due
to higher levels of drug use, unemployment, migration and
ignorance about HIV transmission and healthy relationships.
Fewer than 10% of young women demonstrate correct basic
knowledge of HIV prevention information.
The Central and Eastern European Women’s Network
for Sexual and Reproductive Health and Rights (ASTRA) is
promoting women’s rights as a critical intervention at a key
stage in the region’s epidemic. This includes the right to be free
of coercion and violence both inside and outside the healthcare
system, and guarantees of women’s sexual and reproductive rights.
The organisation emphasises the importance of pre-empting
forced contraception,
sterilisation and
abortion, practices
which plague women
living with HIV around
the world. They also
call for strong youth
education in sexual and
reproductive health.
As a network of
local organisations
that both advocates
and provides services,
ASTRA is already
part of the solution
in a region where
countries are too often
divided. By bringing
experts and advocates
together to argue
unapologetically for the
effectiveness and justice
of women’s rights, they have already helped set the stage
for effective interventions to turn the epidemic in their
region around.
FOOTNOTE:
1. An earlier version was published in the Mujeres Adelante on 22 July
2010. Griffiths, K. 2010. ‘In Focus: Eastern Europe: Women’s rights
before its too late!’. In: Mujeres Adelante, 22 July 2010, pp1-2.
[www.aln.org.za]
…argue unapologetically
for the effectiveness
and justice of
women’s rights…
…promoting women’s
rights as a critical
intervention…
Kate Griffiths is a writer and ethnographer based in
Durban, South Africa. For more information and/or
comments, please contact her at kategrif@gmail.com.
Mujeres Adelante 25
ALQ October 2010 – Special edition incorporating MujereS adelante
Stop the spread of criminalisation and harm…
Jayne Arnott
Introducti on Women activists and
rights advocates
have long pointed
to, and advocated against, the specific
harms and violations experienced by
women specifically, when punitive
legislation, laws and policies interact
with HIV and AIDS. This article
highlights the debates at Vienna on the
criminalisation of HIV transmission
and exposure and the extent to which
such criminalisation harms women,
recognising that these specific legal developments cannot, in
reality, be isolated from the plethora of other laws, policies and
norms that continue to adversely impact on women’s ability to
realise their rights and access prevention, treatment and care in
relation to HIV and AIDS.
Where was the focus in the criminalisati on
debat es at Vienna?
Moono Nyambe, of the Global Network of People Living
with HIV/AIDS (GNP+), presenting at a Satellite Session on the
19th July1, reported that the
development of HIV-specific criminal
laws continues to grow and expand
globally. In 2005, approximately
45 countries in Europe were
criminalising HIV transmission and/
or exposure; by 2010, 200 countries
and judicial territories globally had
laws developed; and, as of July 2010,
over 600 people had been prosecuted
worldwide in over 50 countries. Over
25 countries in Africa have enacted
HIV-specific laws within the past
decade.
Nyambe did note some positive
developments in that Ghana and Mauritius, amongst others,
have rejected the ‘Model Law’ that includes the prosecution
of transmission, and the reversal of Sierra Leone’s policy of
allowing prosecutions of vertical transmission of HIV.
At the same session2, Johanna Kehler of the
AIDS Legal Network (ALN) presented arguments as to how
the criminalisation of HIV transmission and exposure ‘harms’
women, including how such laws increase internal and external
stigma, discourage HIV testing and treatment, increase the risk of
gender-based violence and abuse, and limit women’s sexual and
Stop the spread of criminalisation and harm…
Criminalisation of HIV transmission and exposure
At the 2010 International AIDS Conference in Vienna, with the theme Rights Here, Right Now, there was a
focus on the intersections between punitive legislation, HIV transmission and public health outcomes, with a
major call to specifically halt the criminalisation of intravenous drug users, and to step-up research into the
public health impacts of all laws that impact on people living with HIV
Mujeres Adelante 26Stop the spread of criminalisation and harm…
Special edition incorporating MujereS adelante – October 2010 ALQ
of HIV, make disclosure mandatory, promote mandatory
HIV testing, and are impacting primarily adversely on women.
In a presentation titled ‘Women and the criminalisation
of HIV transmission: Law reform setbacks and successes’5,
Johanna Kehler highlighted examples from Southern Africa
where, for instance, the law in Malawi calls for pre-marital
HIV testing, Tanzania’s HIV-specific law calls for immediate
disclosure of HIV status, and in Mali there is a legal duty to
disclose within six weeks of diagnosis. These clauses impact
significantly on women who are predominantly being tested
for HIV at antenatal facilities and can face violence, abuse and
abandonment when disclosing their positive HIV status.
In a session titled ‘Leaders against criminalisation of sex
work, sodomy, drug use or possession, and HIV transmission’6,
Michel Sidibé, Executive Director of UNAIDS, spoke to the
criminalisation of HIV as not only oppressing ‘vulnerable’
groups, but singled
out women in
particular as the
group with no access
to justice. There
was a recognition
that strategic advocacy shifts are needed and that we could not
continue, in an ad-hoc way, to prevent people going to jail.
Where were the women in criminalisati on
debat es at Vienna?
There was recognition that women were particularly at risk
of being affected by criminal HIV laws, but there were also
calls for more evidence to be gathered to support this in order to
impact on advocacy efforts. It was noted by Susan Timberlake,
reproductive rights.3
Laws that ‘intend’
to protect, actually
punish those most
likely to be aware of
their HIV status, who
are predominantly
women, particularly
in countries where the
epidemic is primarily
h e t e r o s e x u a l l y
transmitted. It was recognised that advocating against
criminalisation of HIV transmission and exposure was
complicated by the support of some women’s groups for these
very laws, which are perceived to ‘protect’ women.
The only session of the conference4 that focussed exclusively
on the criminalisation of HIV exposure and transmission,
confirmed an emerging trend of increasing incidences of
individual prosecutions, particularly in the global north, which
rightfully calls for, amongst others, increased litigation tactics.
However, developing insights and advocacy strategies for change
in the global south, with feminised and generalised epidemics,
and where persecuting HIV transmission and/or exposure
interacts and is enmeshed with a plethora of laws criminalising,
amongst others, termination of pregnancy, homosexuality and
sex work, seemed lacking.
The growth of HIV criminal laws in Africa, for example,
may not be used to prosecute individuals in numbers, but they
are ‘policing’ communities, increasing stigma, supporting rights
violations and creating barriers to accessing services. Most of
these laws are so broad as to criminalise vertical transmission
…developing insights and
advocacy strategies for
change in the global south…
seemed lacking…
…strategic advocacy shifts
are needed…
Mujeres Adelante 27
ALQ October 2010 – Special edition incorporating MujereS adelante
from UNAIDS, in a satellite session7,
that the evidence for the negative
impact of criminalisation is largely
anecdotal, and this is often insufficient
to convince public health officials or
legislators.
Advocacy strategies to address
the specific harms to women were
presented at the same session,
and included building alliances
across human rights, women’s and
AIDS organisations to oppose
criminalisation laws, and awareness
raising, particularly among women’s
organisations, about the adverse
impact of criminalisation laws
on women. Furthermore it is crucial to raise awareness and
enhance capacity among women, particularly positive women,
on criminalisation clauses and laws, and their implications.8
It is critical to engage in law reform processes at the time
of drafting legislation that proposes the criminalisation of
HIV exposure or transmission, as well as lobby policy makers, to
remove criminalisation
clauses from existing
legislation.
With regards to
individual cases,
advocates need to
engage with the
judiciary to facilitate less gender bias in the application of the
law and to monitor the application of criminalisation laws,
especially where women are charged,
towards building an ‘evidence base’.
It was further recommended that
National AIDS Councils need to be
engaged to revisit their national plans,
and prioritise ‘root causes’ of women’s
HIV risks and that we need to oppose
all forms of criminalisation.
Other advocacy strategies put
forward were largely un-gendered
and included building a credible and
scientific base of evidence regarding
HIV transmission and exposure, to use
as defence in individual prosecutions
and not just addressing governments,
but engaging parliamentarians in
public dialogue, creating spaces for social dialogue, ensuring
access to justice, and investing in capacity building in order for
people to claim their rights and increase their advocacy from
the ground.
It was agreed that there was a critical need to develop
a population-level evidence base that could confirm the
negative public health consequences of criminalisation.
This must come from analysis of the observations, and
experiences of advocates and people living with HIV at
grassroots level, across countries. It was recognised that
more needs to be done to improve people living with
HIV’s knowledge of laws and their rights, as well as their
access to legal support and services. This needs to take
place in a context of broader efforts to reduce stigma and
discrimination.
Stop the spread of criminalisation and harm…
…often insufficient to
convince public health
officials or legislators…
Mujeres Adelante 28Stop the spread of criminalisation and harm…
Special edition incorporating MujereS adelante – October 2010 ALQ
are being caught-up
in this campaign
when accessing
antenatal care, and
increasingly ‘forced’
to test for HIV. The
focus on HIV testing
to prevent vertical
transmission means that women’s sexual and reproductive
rights, especially of positive women, are being
further limited, violated and/or denied. The
support for, and growth in criminal HIV laws
adds another level of risk and rights violations
to women and reinforces gender stereotypes
and gender-based violence. It also impacts more
severely on certain populations of women already
stigmatised and often vilified, such as sex workers.
The development of a criminal law to police individual
sexual behaviour and punish HIV transmission and/or exposure
already impacts more severely on women, given unequal gender
relations and male dominance in sexual relations. Women are
already disadvantaged regarding negotiating safer sex and
avoiding sexual violence. Add the real difficulties and dilemmas
women face regarding disclosure to their sexual partners and
Concluding Remar ks
The central debate and challenge that face women’s rights
activists, advocates and organisations when attempting to bring
to the fore the specific realities and risks women face in relation
to HIV and AIDS, is how to promote law and policy change and
address rights violations when women’s realities and risks are
not being fundamentally recognised, and the context that women
find themselves in, not their ‘characteristics’, fail to be addressed
in a manner that can influence real and lasting change.
The impact of the criminalisation of HIV transmission and
exposure on women cannot be analysed in a vacuum. Women
are ‘criminalised’ and ‘prosecuted’ for HIV within society, even
in the absence of criminal laws. Women are
mostly blamed for being HIV positive, blamed
for transmitting the virus to their infants, and
blamed for bringing HIV to the family, and are
often labelled, stigmatised and ostracised.
Within this context, at the same time, there
is an increasing movement to place public health
imperatives before human rights, with HIV testing campaigns
increasingly losing their rights-based focus and resulting
in ‘forced’ HIV testing practices. In April 2010 a major HIV
testing campaign was initiated in South Africa, encouraging
everyone to ‘take responsibility and know their status’. Women
…facilitate less gender bias
in the application
of the law…
Mujeres Adelante 29
ALQ October 2010 – Special edition incorporating MujereS adelante
Stop the spread of criminalisation and harm…
FOOTNOTES:
1. Nyambe, M. 2010. ‘Global overview of criminal laws and
prosecutions for HIV exposure and transmission’. Paper presented at
the XVIII International AIDS Conference, 18-23 July 2010, Vienna,
Austria.
2. Kehler, J. 2010. ‘Criminalisation Harms Women: Reasons &
Advocacy Responses’. Paper presented at the XVIII International
AIDS Conference, 18-23 July 2010, Vienna, Austria.
3. 10 Reasons why Criminalisation of HIV Exposure or Transmission
Harms Women. [www.aln.org.za]
4. Where HIV is a Crime, Not Just a Virus. Session on 22 July 2010 at
the XVIII International AIDS Conference, 18-23 July 2010, Vienna,
Austria.
5. Law Reform in the Context of HIV: Are Human Rights Protected or
Compromised? Session on 19 July 2010 at the XVIII International
AIDS Conference, 18-23 July 2010, Vienna, Austria.
6. Session on 22 July 2010 at the XVIII International AIDS Conference,
18-23 July 2010, Vienna, Austria.
7. Criminalisation of HIV Exposure and Transmission: Global Extent,
Impact and the Way Forward. Session on 19 July, 2010 at the XVIII
AIDS Conference, 18-23 July 2010, Vienna, Austria.
8. Kehler, J. 2010. ‘Criminalisation Harms Women: Reasons &
Advocacy Responses’. Paper presented at the XVIII AIDS
Conference, 18-23 July 2010, Vienna, Austria.
the context is one that
places women more
vulnerable to being
infected with HIV and
to transmitting HIV.
The very presence of
these laws can deter
women from accessing
health services and
place additional
barriers to HIV testing
and disclosure.
Criminalising HIV transmission and exposure allows for
the institutionalisation of blame and shapes popular thinking on
the issue. This can result in the re-enforcement of, and increase
in gender-based violence and sexual and reproductive rights
violations of women.
It is time to take the ‘10 Reasons Why Criminalisation of HIV
Exposure or Transmission Harms Women’ forward, to mobilise
and further develop and deepen our advocacy work, and stop the
spread of criminalisation and harm to women.
…the very presence of these
laws can deter women from
accessing health services
and place additional barriers
to HIV testing
and disclosure…
Jayne Arnott is the Social Policy Researcher at the
AIDS Legal Network (ALN). For more information and/or
comments, please contact her at advocacy@aln.org.za.
Mujeres Adelante 30The Pope, Ca tholicism and HI V
Special edition incorporating MujereS adelante – October 2010 ALQ
women generally, and women living with HIV and AIDS in
particular. Denying women their human rights through a person’s
religious teaching, may be a very powerful tool to influence
people’s perceptions, but remains a clear abuse of power.
The abhorrent discrimination expressed by the Pope in 2008
toward the public ‘needing to be protected from homosexuality’,
is yet another example of this. The damning impact this inflicts
upon the tireless work of the NGOs trying to overcome the
high levels of stigma that perpetuates the wheel of persecution
toward sexuality and
gender identities and
on people who do
not conform to social
standards of femininity
and masculinity is
unprecedented, as
this forces people not
to disclose, to live a
secret, to compromise
their truth, to deny themselves their sexual and reproductive
rights, and practice behaviours that leave them at greater risk
of exposure to HIV and to sexually transmitted infections.
Statements like these also manifest the perpetuation of abuse
Sophie Strachan
A recent visit from Pope Benedict XVI to the UK led to
two leading charities, Family Planning Association
and National AIDS Trust5, to issue a press release
highlighting the discriminatory nature of the Pope’s statements
and dismissive approach toward modern day teachings on
sexuality, and sexual health and well-being, illustrated by
statements such as the teaching of modern contraception
‘is intrinsically evil’.
The Catholic Church’s well-known position on ‘abortion’
further places women’s health and lives in danger. Evidence,
historically and globally, shows that preventing women from
accessing safe and legal abortion does not stop abortions;
instead it forces women to take drastic actions, seeking illegal
and life-threatening abortion procedures, sometimes with no
general anaesthetic. The Pope’s teachings on abortion only serve
to perpetuate this situation.
Violence against women and girls is a leading factor in
the feminisation of the global AIDS pandemic. The impact of
both HIV and violence against women are exacerbated by non
rights-based approaches, a failure to protect sexual and
reproductive rights, and laws that are discriminatory against
Conflicting messages…
The Pope, Catholicism and HIV
The Roman Catholic Church has been suffering a decline in membership and clergy in most areas of the
world, except on the African continent, where the church continues to maintain a strong hold. Nigeria is
now home to one of the world’s largest catholic seminary, with other African nations following suit very
closely behind. The sexual abuse scandals that were plaguing the Catholic Church in Europe earlier this
year seem to, however, have had limited impact on the Catholic Church and its followers in Africa.
…may be a very powerful
tool to influence people’s
perceptions, but remains a
clear abuse of power…
Mujeres Adelante 31
ALQ October 2010 – Special edition incorporating MujereS adelante
The Pope, Ca tholicism and HI V
to his church, how
damning are his
ignorant messages
when it comes
to addressing the
global HIV and
AIDS pandemics,
and recognising
people’s sexual and
reproductive rights!
The question
remains of how do ‘we’ address and respond to such
conflicting messages, greatly impacting on people’s rights and
risks within the global pandemics? The answer seems to lie
in adopting a ‘rights-based approach’, but will the church be
willing to ‘hear’ this?
FOOTNOTE:
1. For further information please go to www.fpa.org.uk (Family Planning
Association) and/or www.nat.org.uk (National AIDS Trust).
of individuals’ rights to self-expression through their sexuality
regardless of gender and sexual orientation, and the freedom
and right to sexual pleasure within any relationship be that
heterosexual, men who have sex with men (MSM), and/or
women who have sex with women (WSW).
In 2009, the official Roman Catholic Church policy towards
controlling the AIDS pandemic did not allow the use of
condoms, with the Pope proclaiming that ‘the use of
condoms increased the spread of HIV’.
This statement caused great controversy amongst leading
bodies addressing the spread of HIV, and had a potentially
damning effect on prevention methods with proven evidence of
successes. The World Health Organisation (WHO) responded
at the time by saying that consistent and correct condom use
reduces the risk of HIV infection by 90%, and that:
Incorrect statements about HIV and the use of condoms
are dangerous when facing a global pandemic which
currently affects 42 million people worldwide.
Such ignorance on condom use, as portrayed by the
Catholic Church, creates more fear and grave concern, especially
as it comes from a figure who wields significant influence and
power. The Vatican’s encouragement on sexual abstinence to
prevent the spread of this ‘disease’, once again, does nothing
other than to further the discrimination against people living
with HIV, and denial of a person’s fundamental sexual and
reproductive rights, as well as stigmatisation and persecution of
expressed sexualities and gender identities.
The Pope’s power as an individual is unparalleled; there are
currently 1.16 billion members of the Roman Catholic Church
worldwide. With such influence, and a growing ‘membership’
…forces people not to
disclose, to live a secret,
to compromise their truth,
to deny themselves their
sexual and
reproductive rights…
Sophie Strachan is a case worker at Positively UK.
For more information and/or comments,
please contact her at sstrachan@positivelyuk.org.uk.
Mujeres Adelante 32The need to move beyond…
Special edition incorporating MujereS adelante – October 2010 ALQ
partners. The denial of basic human
rights as a result of sexual orientation
may well be the most significant social
risk factor for same-sex practicing
Africans. Social vulnerability to HIV
is not an innate condition, but the
result of legal, political and economic
inequalities that lead to an inability
of people to protect themselves from
exposure to HIV, or to control its impact
on their lives.
There is a continuous need to draw
attention to the lack of specific HIV
programming and services; as well as the actions and inactions
of governments, healthcare providers, and foreign donor
contributions to HIV vulnerabilities, when same-sex practicing
people face discrimination and unequal treatment in obtaining
healthcare, safer-sex supplies, information or treatment.
We need to move beyond these notable exceptions and begin
to respond right here and right now!
FOOTNOTE:
1. This is an excerpt from an article published in the Mujeres Adelante on
19 July 2010. Letsike, M.S., 2010. ‘News from the margins:
The need to move beyond’. In: Mujeres Adelante, 19 July 2010, p3.
[www.aln.org.za]
Mmapaseka ‘Steve’ Letsike
We know that despite
increasing evidence
of the need for HIV
and health-related interventions for
same-sex practicing people, there are
limited formal HIV prevention, testing,
treatment, care and support programmes
targeting men who have sex with men,
and even fewer for women who have
sex with women. Interventions remain
scarce for many critical populations
in many countries, and same-sex practicing Africans are one
of them. Without immediate attention to this human rights
and public health crisis, efforts to effectively respond to the
AIDS pandemic
in Africa may be
seriously undermined
and potentially reverse
any gains made in
the response to HIV
and AIDS.
Persistent violations
of human rights are
exposing same-sex
practicing people to increased risk to HIV and circumscribing
their ability to protect themselves, their families and their
…social vulnerability to HIV
is not an innate condition,
but the result of legal,
political and economic
inequalities…
The need to move beyond…1
We know that despite increasing evidence of the need for HIV and health-related interventions for same-sex
practicing people, there are limited formal HIV prevention, testing, treatment, care and support programmes
targeting men who have sex with men, and even fewer for women who have sex with women.
‘Steve’ Letsike is with OUT LGBT Well-Being, South Africa.
Mujeres Adelante 33
ALQ October 2010 – Special edition incorporating MujereS adelante
Kate Griffiths
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 in
the Human Rights
Networking Zone on Tuesday, 20 July 2010, to discuss
this marginalisation, 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
women who have sex with women (WSW). 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
Locating lesbians in the response to HIV
Invisible sexualities…1
Locating lesbians in the response to HIV
…stigma continues
to render invisible the
sexualities of those most
marginalised by gender bias
and heteronormativity…
Mujeres Adelante 34Locating lesbians in the response to HIV
Special edition incorporating MujereS adelante – October 2010 ALQ
invisible in the world of HIV policy and programming 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
hetero-normative 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 pandemic.
FOOTNOTE:
1. This is an excerpt from an article published in the Mujeres Adelante on
19 July 2010. Letsike, M.S., 2010. ‘News from the margins:
The need to move beyond’. In: Mujeres Adelante, 19 July 2010, p3.
[www.aln.org.za]
…this unnecessary division
stems from a sexist
blindness to the importance
of women’s sexual pleasure
and sexual choices…
…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…
Kate Griffiths is a writer and ethnographer based in
Durban, South Africa. For more information and/or
comments, please contact her at kategrif@gmail.com.
Mujeres Adelante 35
ALQ October 2010 – Special edition incorporating MujereS adelante
Kate Griffiths
The trans women’s network from Latin America and
the Caribbean hosted a session that highlighted the
lack of attention paid to the specific issues affecting
trans women in the fields of HIV advocacy and research.
While the speakers,
Marcela Romero and
J. Villazan, opened by
discussing the issues
affecting trans women
in Latin America and
the Caribbean, the
session quickly evolved
into a workshop on the
needs of trans women
from every country.
Villazan highlighted
the lack of research on
trans women and HIV in her region, where only two studies
specifically track prevalence among this population, suggesting
that Peru and Argentina have rates as high as 35% among trans
women. According to JoAnne Keatly, speaking form the floor,
rates are similar among San Francisco’s trans population with
rates among African American trans women as high as 56%.
Nevertheless, researchers continue to neglect trans women,
a population who is vulnerable to HIV co-factors, including
violence and drug use, but who are also likely to survive as
sex workers, and who in some countries may play a central
epidemiological role. Instead, government agencies, including
the Center for Disease Control in the United States, include
trans women in the research category ‘men who have sex with
men or MSM’.
This elision goes beyond a failure of the research agenda, to
the funding structures of advocacy and service delivery, as well
as to the representation of trans women at the main session of
the IAS conference this week. Said Keatly:
…I am angry. I am angry at the organisers of this
conference, because I feel we must be heard. Instead
we’ve been relegated to the Global Village and offered a
stage to do drag shows…
By failing to distinguish between populations of people living
with HIV who are gay men and those who are trans women, the
statistics ignore what may be an even greater crisis among trans
women, and conceal the possibility of diverse transmission
modes and mechanisms. Trans women activists argue that
funding MSM led organisations for trans programming also
leads to a lack of trans representation at the organisational level,
and to continuing increased marginalisation.
These concerns of invisibility and marginalisation echo those
of lesbian and bisexual women who are also battling stigma and
marginalisation in the movement for health and human rights.
FOOTNOTE:
1. An earlier version was published in the Mujeres Adelante on 22 July 2010.
Griffiths, K. 2010. ‘News from the ‘margins’: Relegated to the Global
Village’. In: Mujeres Adelante, 22 July 2010, p3.[www.aln.org.za]
Trans women and the AIDS response
Relegated to the Global Village…1
Trans women and the AIDS response
Kate Griffiths is a writer and ethnographer based in
Durban, South Africa. For more information and/or
comments, please contact her at kategrif@gmail.com.
Mujeres Adelante 36Included in prevention debates…
Special edition incorporating MujereS adelante – October 2010 ALQ
Ebony Johnson
Women worldwide are
celebrating a win for
HIV prevention, women’s
rights and scientific discovery. The trial
results are in and have shown that Tenofovir
gel microbicide has a 39% reduction in
HIV transmission, and a reduction in half of
herpes simplex virus (HSV2). Those results
are amazing and will pave the way for greater
investments and larger trials.
However, as the possibility of women
having a microbicide draws closer, the
messaging must move with it. Good science must be accompanied
by great advocacy and clear messaging. While women will
hear that a microbicide will some day in the near future offer
some protection against HIV and herpes in
women who are HIV negative, women must
also be informed that a microbicide is only
partially effective against HIV and HSV2.
The messaging must be clear, simple on both
the strengths and limitations of microbicides.
Women must be informed that a microbicide
is a new tool in the prevention toolbox,
and there are still risks for other STIs and
unplanned pregnancy. Clear messaging must still inform women
that with impending availability of a microbicide, condoms are
still key, and should not be abandoned. Rather, it is important
that women know that condoms should remain in play and be
complemented by microbicides.
Despite the overwhelming joy of the trial results, it is a
sobering moment for women living with HIV. Microbicides
that are projected to save countless women
worldwide from being infected with HIV
offer no new solutions for women living with
HIV who are still without the desperately
needed tools to prevent re-infection, STIs
and unplanned pregnancies. The Tenofovir
gel, when available, will be expressly for use
by women who are HIV negative. As such,
women living with HIV must remain vigilant
and passionate to advocate for equally
promising women-delivered prevention
tools that are safe and effective for use by
HIV positive women. This means that positive women must
ensure that their rights to healthy, satisfying and safe sexual lives
are respected and met with research that supports those rights.
While the rally cries, women living with HIV
will continue to push for microbicides and
other new prevention technologies; positive
women who face immense vulnerabilities
around sex and choice must be committed
to their efforts of being included in
prevention debates.
…good science must be
accompanied by great
advocacy and clear
messaging…
…messaging must be
clear, simple on both the
strengths and limitations
of microbicides…
Included in prevention debates
Microbicides and solutions for positive women
Ebony Johnson is with the International Community
of Women Living with HIV/AIDS (ICW).
For more information and/or comments, please contact
her on femme_poz@yahoo.com
Mujeres Adelante 37
ALQ October 2010 – Special edition incorporating MujereS adelante
Naina Khanna, Waheedah Shabazz-El
The HIV epidemic among women in the United
States is not driven by women making ‘risky or
rash decisions’. Until we redefine vulnerability, and
transform the social and economic context in which women live,
play, work, and love, we will fail to achieve prevention justice for
women and HIV will continue to ravage our sisters, daughters,
mothers, and grandmothers. […]
Achieving prevention justice for women demands first a
commitment from the HIV community and federal agencies
responsible for containing the epidemic to take the HIV crisis
among women seriously. […]
Achieving prevention justice for women will also require
research and investment to promote a structural and collaborative
response to the HIV epidemic that truly upholds women’s
human rights, including locating comprehensive sexual and
reproductive health services within HIV services. It will
necessitate increased investment in HIV prevention overall, and
implementing a more comprehensive and sophisticated system
to target and resource services for communities at structurally
elevated risk for HIV – not just individuals who self-report
behavioural risk. It will mandate increasing diversity, usability,
accessibility and affordability of HIV prevention mechanisms
that can be controlled by women. […]
Achieving prevention justice for women requires community
leadership to create a social and political environment where
women’s health and right to access medical services is no longer
an acceptable bargaining chip for political parties, but a reality.
And, above all, it demands a continual commitment to address
racial, gender, and economic injustice throughout the entire
healthcare system
FOOTNOTE:
1. Excerpts from an article published in the Mujeres Adelante on
19 July 2010. Khanna, N. & Shabazz-El, W. 2010. ‘Special Report:
HIV Prevention Justice: Not optional for women’. In: Mujeres
Adelante, 19 July 2010, pp6-7. The full article is available
on www.aln.org.za.
Termination of pregnancy ‘choices’ for positive women
Naina is with Women Organized to Respond to Lifethreatening
Disease (WORLD), and Waheedah with the
Community HIV/AIDS Mobilization Project (CHAMP).
Prevention justice for
women…1
38Microbicide Success :
New opp ortunities for women
Special edition incorporating MujereS adelante – October 2010 ALQ
Microbicide Success:
New opportunities for women
Zena Stein and Ida Susser1
The success of the first microbicide ever shown
convincingly to prevent HIV in women was announced
in Vienna at the International AIDS Conference, in
July 2010. A vaginal gel, applied by a woman at any time in the
12 hours before sexual intercourse and then again at any time
within 12 hours after intercourse, was found to significantly
reduce the risk of HIV infection in women.
On the basis of the argument outlined below, we propose
that this gel (1% Tenofovir) is both safe enough and effective
enough to be made immediately available, under controlled
conditions, to women in high risk populations. The gel, if
widely distributed, could be expected to reduce the number
of HIV infections without harm to those who choose to use
it. It has been estimated that in the next five years the wide
use of this gel could avert thousands of new infections in
South Africa alone.2
One must bear in mind that every woman
who does become infected with HIV will,
in time, require treatment for the rest of her
life. Prevention is not only humane; it is also
sensible health policy.
The results and moving forwar d
The effectiveness of the Tenofovir
gel was tested among 889 women in KwaZulu Natal and
published in Science.3 Over 30 months, the incidence of new
HIV infections was compared among women using a 1% vaginal
gel containing Tenofovir, against those using a placebo gel with
similar appearance, taste and consistency. Among those using
the Tenofovir gel, the overall result was 39% protection (with
the rate of HIV infection reduced from 9.1% among those not
using the gel to 5.6% among women using the gel) – certainly
statistically significant. Among the 336 participants who used
the gel consistently 80% of the time, protection was 54% (with
the rate of HIV infection reduced from 9.3% to 4.2%); also
clearly significant.
Given this result, we may ask, where do we go next? As
one senior researcher wrote us before attending the 85 member
conference held on this topic in Johannesburg in August 2010:
As you know, for drug regulators the standard for
licensing is TWO independent studies with P less
than .05, and we have landed in the dreaded no-man’s
land where a new placebo-controlled trial will be
difficult to implement – politically, practically
and ethically.
Indeed this high level conference,
attended by WHO, UNAIDS, USAID, South
African governmental bodies, funders,
researchers and other stakeholders surprisingly
recommended further randomised control
trials (using placebos), one ongoing and one
to be newly launched in South Africa. These
further trials involve the ethical dilemma of
assigning thousands of women to a known inferior treatment,
raising various ethical challenges. Such further trials will almost
certainly delay the roll-out of a source of protection for women
for a further three or more years.
Mujeres Adelante …prevention is not only
humane; it is also sensible
health policy…
Mujeres Adelante 39
ALQ October 2010 – Special edition incorporating MujereS adelante
The first question for women
across the world, especially for
those at high risk of HIV infection,
and for the men who join with
us in our concern, then becomes
‘What is the standard that drug
regulators should require?’
A close reading of the
current USA Food and Drug
Administration (FDA) Code of
Federal Regulations reveals that
the approval of new drugs does
not demand two randomised
controlled trials. In fact, it
carefully specifies the criteria
required before a planned study can be judged as adequately
designed and well-controlled.
The current trial included large numbers of women involved,
careful monitoring of all the women’s behaviour in diverse ways,
significant risk reduction, and a key finding of a dose response
relationship between use of the gel and prevention. Some people
have called the CAPRISA trial only a test of
concept or a preliminary study.4 However,
in fact, the KwaZulu Natal trial satisfies
requirements to be judged as an adequately
designed and well-controlled trial. Hence,
there is every reason for the FDA, and other
regulatory bodies, to release this gel for
general use. Nonetheless, prudence calls for
the distribution of the gel to be monitored
and only provided to women under certain conditions with prior
testing for eligibility.
Possibility of harm
For every new drug, including Tenofovir, there is always
a possibility of harm. However, Tenofovir is an antiretroviral
drug that has been safely used as a pill by many thousands,
if not millions, of HIV infected women and men all over the
world. Thus, the likely side effects for taking the drug by mouth
are few and well-known. However, far fewer
women have used Tenofovir as a vaginal
gel. Among the over 400 participants in the
CAPRISA trial who did use Tenofovir
gel, adverse events were few and carefully
studied. No Tenofovir-related resistant
mutations have been detected among the
35 women tested of the 38 who acquired
HIV infection while using the gel. The
study showed no adverse effect of use of the gel on pregnancy
outcomes although, again, numbers were few.
Microbicide Success : New opp ortunities for women
…the ethical dilemma of
assigning thousands of
women to a known
inferior treatment…
40Microbicide Success :
New opp ortunities for women
Special edition incorporating MujereS adelante – October 2010 ALQ
It is always possible that after thousands more women
have used the gel in a roll-out (which should be monitored),
some adverse effect might appear, for instance, in relation
to renal dysfunction, or hepatitis, or as mentioned above,
pregnancy. These and other adverse events
are unlikely to occur in sufficient numbers
in a repeat randomised controlled trial, as
again too few women will be included for
such rare occurrences to be discerned. So,
drug regulators and public health advocates
should certainly emphasise post-marketing
studies for further possible findings about the
potential harm from using Tenofovir gel.
Benefits
Will the gel be beneficial, less so or
more so, in other populations? It is always
possible that among a different set of women
in different circumstances the protection may
be less than half, even among high users, as
it was here. However, it is extremely unlikely that there would
be no protection at all, because the confidence intervals in the
KwaZulu Natal study show that 95% of the women who used
the gel most of the time did benefit from its use. The confidence
intervals have been mentioned by some as lowering actual
‘confidence’ in the result. In practice, they strengthen inference,
because they show that among high adherers in the use of the
gel, 95% of women benefited from the gel so that their HIV
infection rate lay between 2.1% and 7.6%, whereas for 95%
of high adherers among placebo users, the infection rate lay
between 6.0% and 13.7%; hardly overlapping.
We note also that the infection rate of another widespread
infection, HSV 2, was halved with the use of Tenofovir.
This was unexpected, but very important, because HSV 2 is
widespread, and seems, in those infected, to enhance the risk
of contracting HIV.
Roll-out versus more
ra ndomised trials
It was quite clear from the test results
that the more closely the participants
followed instructions for use, the greater the
protection achieved. Once the gel has been
released, much work should follow in terms
of enhancing its effectiveness: operational
research, post-marketing monitoring, and
Randomised Encouragement Trials. These
studies need to be carefully designed and
widely implemented, especially among
women at high risk, whether in Africa,
Haiti, the US or elsewhere.
Adva nta ges over ra ndomised
controlled trials
Observations based on these studies will have several
advantages over randomised controlled trials. The first is that
they do not challenge the equipoise rule, eliminating the serious
ethical infringement of assigning some women, without their
knowledge, to a probably inferior treatment.
Here we need to consider equipoise in more detail. Equipoise
is a term used by ethicists to describe or justify the blind and
hence non-manipulative assignment of participants to different
treatments. The subjects under study are told at the start of the
trial that the experimenters do not know which treatment may
…we cannot agree that
equipoise can be achieved
in current and future
randomised controlled trials
in which a placebo vaginal
gel is to be administered…
Mujeres Adelante
Mujeres Adelante 41
ALQ October 2010 – Special edition incorporating MujereS adelante
help and which may not. Clearly, equipoise
cannot be achieved in case control trials
from this moment, if some women will be
given a Tenofovir gel, while others will be
given a placebo gel. A very serious issue is
raised thereby, both for ongoing trials and for
future trials, so as not to raise the question
of unethical standards neither among South
African women, nor for those in the other countries in which
these trials are to be conducted.
We have been told by participants that this question was
discussed at the recent Johannesburg meeting, but not on what
grounds it was resolved.
Following on what we have discussed above, and on many
discussions we have pursued with others, both in person and in
correspondence, we cannot agree that equipoise can be achieved
in current and future randomised controlled trials in which a
placebo vaginal gel is to be administered.
One possible way
around this problem
resides in the way in
which the consent to
participate is framed:
for instance, if we invite
women to participate in
a trial in which they are
informed, at the start,
that one of the gels to
which they will be (unknowingly) assigned to is not expected
to reduce their risk of HIV infection, while the other is likely
(or, has already been shown) to do so. Nevertheless, the consent
form will have to continue that the current
trial will contribute more understanding
about how much their risk could be reduced.
With this kind of ‘informed’ consent, the
number of participants may be slightly
less than expected, but to compensate for
that, an honest contract could be achieved
with trialists.
Institutional Review Boards have been tasked with ensuring
equipoise, and both Community Advisory Boards and Data
Safety and Monitoring Boards are, to some extent, also
responsible for representing the interests of women recruited to
trials. In Africa, trials have been particularly active in explaining
the purposes and theories of randomised controlled trials.
After decades of advocating for human rights for women, we
cannot risk false steps now, when an effective harm reduction
procedure is almost within our grasp. This is the first reason why
we suggest that rather than continuing randomised control trials,
research should proceed with a closely monitored roll-out of the
gel. In future trials, comparisons can be made between different
strengths of the gel, different encouragement strategies, or other
differential procedures, but without the need for a placebo arm
of the study.
The second advantage of post-marketing strategies is
that they will be carried out in real life situations, so that
the experience of all women who opt to use the gel and
those who serve them, informed by current understanding
of its benefits and possible hazards, will add directly to
knowledge and experience in the use of the gel. The third
advantage of these approaches is that the gel will reach
more people more quickly.
…we cannot risk false steps
now, when an effective
harm reduction procedure is
almost within our grasp…
…an honest contract could
be achieved with trialists…
Microbicide Success : New opp ortunities for women
Mujeres Adelante 42Microbicide Success :
New opp ortunities for women
Special edition incorporating MujereS adelante – October 2010 ALQ
Where to go from here?
Of course, this is where we need input from women and
health services from a range of different localities and situations.
Early field experiences will pave the way for the roll-out of
improved preparations, applicators and procedures, as they
become understood and available.
The use of this gel will not be dependent on the profits that
will accrue to pharmaceutical firms, since it is licensed to the
South African government – it can be made available to people
in low resource countries at very low cost. This makes it all the
more critical that what has been accomplished and the research
that is planned for
better understanding
and improving the gel,
must be transparent,
and the scientific
clinical, biological,
epidemiological and
statistical issues be
explained and studied
by all who care about harm reduction and prevention.
The MCC and the FDA should be seen as collaborators who
can be convinced of the importance of the release of the gel
to the public, rather than an inflexible wall. We must devise,
together with them, an open trial that enables women, as fully
as we can, and educates them about the pros and cons of the
use of the Tenofovir gel. We have already been coping with the
behavioural issues involving partial protection from the risk of
HIV infection. For men, following medical male circumcision,
this presents one kind of a problem. For women, no microbicide
likely to be available for years is expected to be more than
partial, and yet, we see their value…whether 40% or 50% or
60% effective. So, an open trial would be meaningful and the
report of use/non-use would convey to trialists the anticipated
reduction in HIV infection rate.
We very positively appreciate and understand the key role
of research in prevention of HIV. But we urge that the need for
research should not delay the use of what we currently have, and
that research truly moves us onwards from where we are now.
FOOTNOTES:
1. We want to thank Anke Erhardt, Director of the Columbia University
HIV Center, for convening a faculty seminar on this paper and the
participants for their constructive commentary.
2. William, B.G., Abdool Karim, S.S., Gouws, E. & Abdool Karim, Q.
2010. ‘The impact of Tenofovir gel on the epidemic of HIV in South
Africa’. Paper presented at the XVIII International AIDS Conference,
Vienna, 18-23 July, 2010.
3. Abdool Karim, Q. et al. 2010. ‘Effectiveness and safety of tenofovir
gel, an antiretroviral microbicide, for the prevention of HIV infection
in women’. In: Science, 2010:329, pp1168-1174.
4. For information on the CAPRISA trial and arguments, see FHI and
the Centre for the AIDS Programme of Research in South Africa.
2010. CAPRISA 004 Trial: Summary Sheet of Facts. Research
Triangle Park, NC USA, July 2010. [www.caprisa.org/joomla/Micro/
CAPRISA%20004%20Summary%20factsheet_20%20July%
202010.pdf]
Zena Stein is an epidemiologist and Professor (Emerita)
of Public Health Psychiatry and Co-Director (Emerita) at
the HIV Centre and at Columbia University, and Ida Susser
is a Professor of Anthropology at the City University of
New York Graduate Center and an Adjunct Professor
at the Department of Socio-Medical Sciences, School of
Public Health, at Columbia University.
For more information and/or comments,
please contact Ida at susseris@gmail.com.
…it can be made available
to people in low resource
countries at very low cost…
Mujeres Adelante 43
ALQ October 2010 – Special edition incorporating MujereS adelante
Sharon Hillier and Ian McGowan
The results of CAPRISA 004 represent a major
milestone for the HIV prevention field and have
brought us to the place that we had long hoped for
and all along believed was possible – proof of concept that a
topical microbicide, in this case Tenofovir gel, can interrupt
HIV transmission in women. But as excited as we all are about
these results, proof of concept is not reason enough to declare
victory. Evidence about safety and effectiveness must be very
strong before any intervention can be considered for widespread
use, which is why regulators, including the U.S. Food and Drug
Administration (FDA), typically require data from more than
one rigorously conducted and well-designed trial.
Although the CAPRISA 004 study was very well done, it was
limited in size and it was not developed as a single trial designed
to support licensure. Moreover, while the study’s results are
compelling, they are simply not strong enough to stand alone.
The confidence interval surrounding the estimated effectiveness
of 39% is quite broad. In other words, Tenofovir gel used at the
time of intercourse could be as low as 6% effective or as high as
60% effective.
Indeed, the FDA
has made clear that
a decision about
licensure of Tenofovir
gel will depend on
the results of a second
pivotal confirmatory
trial, namely VOICE. VOICE (Vaginal and Oral Interventions
to Control the Epidemic) is a study, funded by the U.S. National
Institutes of Health, that we are conducting in sub-Saharan
Africa. We plan to enrol 5,000 women – 1,000 of whom will be
randomised to daily use of Tenofovir gel. We are already near
the halfway mark toward completing enrolment and remain on
track for reporting results in early 2013.
As researchers and clinicians, we agree with the FDA’s
requirement for stronger evidence about Tenofovir gel.
Importantly, the women in the communities where we are
conducting VOICE seem to share this sentiment. They, like all
women, deserve to have the best possible evidence about the
potential benefits and risks of Tenofovir gel.
Comment on Stein and Susser
…women, deserve to have
the best possible evidence
about the potential benefits
and risks of Tenofovir gel…
Requirement for stronger evidence…
Comment on Stein and Susser
Sharon Hillier and Ian McGowan are with the Microbicide
Trials Network. For more information and/or comment,
please contact Sharon at hillsl@mwri.magee.edu.
Photo: AP Photo/Denis Farrell
Mujeres Adelante 44Validation is ess ential…
Special edition incorporating MujereS adelante – October 2010 ALQ
Mitchell Warren, Emily Bass and Manju Chatani
Can a placebo-controlled trial be conducted in
the wake of the CAPRISA 004 findings that the gel
reduced HIV-negative women’s risk
by an estimated 39 percent overall?
AVAC believes the answer is ‘yes’,
provided that the informed consent
processes for all ongoing and
planned trials of 1% Tenofovir gel
include explicit explanation of the
existing data on 1% Tenofovir gel.
This intensive effort to ensure
comprehension on the part of
trial participants must be backed-up
by additional consultations with a range of community
groups both in South Africa and in other countries where
1% Tenofovir gel has the potential to be a powerful
HIV prevention tool. The substance of these consultations will
vary by setting, but should focus on the existing data regarding 1%
Tenofovir gel, emerging findings on oral ARV-based prevention,
and in gauging and soliciting community understandings and
definitions of ‘equipoise’ around 1% Tenofovir gel and other forms of
ARV-based prevention, and of concerns regarding follow-up studies.
Like many other groups and individuals, including
Zena Stein and Ida Susser, AVAC celebrates the news from
CAPRISA 004 as a landmark event in the search for new
biomedical HIV prevention strategies. The trial provided
compelling evidence that the gel reduces
women’s risk of HIV infection and that this
benefit is related to levels of adherence:
women with more consistent use of the gel,
as measured by self report and returned
applicators, had lower rates of HIV infection,
than women with moderate or low adherence
who also received 1% Tenofovir gel.
Given this evidence that ‘the gel works’,
why is it ethical to conduct additional trials
with a placebo? Guidance on this subject
comes from many sources, including the
WHO/UNAIDS Ethical Guidance for Biomedical Prevention
Trials which states:
Researchers, research staff, and trial sponsors should
ensure, as an integral component of the research protocol,
that appropriate counselling and access to all state of the
art HIV risk reduction methods are provided to participants
throughout the duration of the biomedical HIV prevention
trial. New HIV-risk-reduction methods should be added,
based on consultation among all research stakeholders
…missing pieces in the
process of full, scientific
validation of the product
and in the regulatory
approval process…
Validation is essential…1
Comment on Stein and Susser
Mujeres Adelante 45
ALQ October 2010 – Special edition incorporating MujereS adelante
including the community, as they are
scientifically validated or as they are
approved by relevant authorities.1
In this instance, the question is whether
1% Tenofovir gel is ‘scientifically validated’
on the basis of the data from CAPRISA 004.
At this moment, AVAC believes that there
are still important questions to be answered
about the level of protection provided by
1% Tenofovir gel over time and in different
populations, and that these data are missing pieces in the process
of full, scientific validation of the product and in the regulatory
approval process. These are not academic questions, but are,
instead, essential to the process of building a solid, package of
information that can be used in regulatory submissions and as
the basis of clear, specific communication with potential users.
Given the challenges of introducing and marketing a partially
effective product to donors, policy makers, users, their partners,
medical providers and all the other stakeholders whose support
will be required to realise the benefit of this or any other new
intervention, such validation is essential.
If regulatory bodies indicated that they would accept
data from a non-traditional follow-up trial, i.e. one that did
not include a placebo arm, that would open a new route for
proceeding. In the absence of such an indication, though, there
is a risk of conducting research that is perceived as leaving
doubts or imprecision around the true effectiveness of the
product in the eyes of regulatory authorities. (The US Food
and Drug Administration has recently stated
that it would fast track 1% Tenofovir gel on
the basis of data from the ongoing VOICE
trial in addition to CAPRISA 004. It is not
yet clear what studies will be required by the
South African Medicines Control Council to
register the product in South Africa.)
Next steps should be taken with the twin
priorities of ensuring safety and learning
more about effectiveness in the shortest
possible timeframe, and with the greatest degree of certainty
possible. Assuming that safety and effectiveness are validated,
this is the best course for ultimately making this new prevention
tool available to all who need it, and to translating clinical trial
results into public health impact.
FOOTNOTE:
1. http://data.unaids.org/pub/Report/2007/JC1399_ethical_
considerations_en.pdf.
Validation is ess ential…
Mitchell Warren is the Executive Director,
Emily Bass the Programme Director, and Manju Chatani
the Senior Programme Manager at AVAC.
For more information and/or comments,
please contact Mitchell on mitchell@avac.org.
…ensuring safety
and learning more
about effectiveness in
the shortest possible
timeframe…
Mujeres Adelante 46Comment on Stein and Susser
Special edition incorporating MujereS adelante – October 2010 ALQ
Erica Gollub
Early studies of ‘hierarchical counselling’ on
traditional female barrier contraceptive methods
that might reduce HIV/STI risks for women, were
constructed on notions that ‘something
is better than nothing’ to give women
prevention tools. These studies argued that,
in the absence of 100% protection, chipping
away at risk must be our goal. Mathematical
modelling has borne out this ‘risk reduction’
argument; a substantial number of HIV
infections in women could result if even
a very partially effective drug or device
were used widely in the populations at
highest risk.
After many years of debate, increasingly lower product
effectiveness levels (for example, 30%) have come to be accepted
in the microbicide research community as the minimally
acceptable goal for pursuing approval of a tested formulation. On
paper, then, we have moved a good distance, but the consensus
is still shaky. There are multiple fears – that the product will not
be used correctly (with women, and vaginally-inserted products,
this fear is particularly pronounced with no good evidence to
support it); that risk behaviours will change if people believe
they are ‘protected’ (risk compensation); and that women will
be subject to future, physical harms that are not apparent with
our current, imperfect set of data. There has
been a nagging discomfort with the idea
that women themselves should be the ones
to choose in the absence of perfect data and
a perfect product.
These fears may explain a large part
of the reluctance to move forward with
the release of Tenofovir gel, now after
the entire spectrum of testing has been
completed with the first promising results
to come from any microbicide trial to date.
Stein and Susser make a compelling argument for releasing
Tenofovir gel for women on the basis that safety concerns have
been already evaluated according to standards that are used for
other classes of drugs. FDA is charged first with addressing the
safety profile of new drugs for approval. Safety concerns in this
large-scale, high-quality trial (CAPRISA 004), were virtually
…on paper, then, we have
moved a good distance,
but the consensus
is still shaky…
How much protection is enough…?
Comment on Stein and Susser
The question, ‘How much is enough?’ has been a central theme in our efforts to provide women with
protection against HIV infection for the past two decades. The idea of promoting a drug, or device, which is
not 100% effective at blocking HIV transmission to a woman – or even close – has been highly contentious.
Mujeres Adelante 47
ALQ October 2010 – Special edition incorporating MujereS adelante
non-existent. The pre-set effectiveness standards of the trial were met.
The arguments for continued testing of Tenofovir gel in the context
of clinical trials, thus lose their ground, since Phase 3 testing is
not the forum for investigating future potential risks in a larger,
more general population – the appropriate remedy for the further
investigations of different dosing schedules, or extremely rare
effects in younger (than 18 years of age) women, is in Phase
4, or drug surveillance
phase, post-release.
Stein and Susser make
careful suggestions
regarding important
paths to pursue to
increase the rigor of
Phase 4 activities,
citing education and
intervention approaches. But certainly, the drug should not
be subjected to an even higher standard, than any other drug
(i.e., repeat Phase 3 testing) in what amounts to a very long
debate over magic numbers. The lives of too many women are
at stake.
Experiences with the female condom point to the multiple
levels of paternalism in the drug/device regulatory system,
and community at large. Regulatory authorities were not sure
women could use the device correctly. This device, the first
woman-initiated means of protection, suffered absent support
from federal agencies and constant lampooning from the media,
resulting in widespread negative views among providers and
even potential users. These are some of the multiple challenges
ahead for Tenofovir gel. Pro-active support and vigorous
promotion will be necessary from the AIDS prevention
community to support women’s adoption, use, and the flow of
consistent supplies.
There will never be a consensus on ‘how much protection is
enough’, because the answer is not – in the main – a scientific
one. While we continue to debate these issues, women continue
to be infected and die. If lessons from the past decades have any
value, we will always have ‘potential future harm’ with newlyreleased
products to contend with, but the present harm for
millions of women, should be where we keep our focus.
Comment on Stein and Susser
Erica Gollub is a Public Health Specialist at the
Department of Epidemiology and Biostatistics,
Robert Stempel College of Public Health and
Social Work, at the Florida International University.
For more information and/or comments,
please contact her on elgollub@gmail.com.
…these fears may
explain a large part of
the reluctance to move
forward…
Mujeres Adelante Bruce Levin
We have had many emails questioning our approach
to confidence limits and suggesting that we cannot
be confident of the results for the microbicide gel.
So we asked Professor Bruce Levin, Chairman of
Biostatistics at the Mailman School of Public Health
at Columbia University.
The question really is, what do confidence limits mean
to whom?
If I am initiating a health plan, what are the chances I would
reduce the rate of HIV infection, given the statistics on Table 2
of the Karim et al paper (6-60)1?
Or, what do they mean to me, a high adherer, if I use the
gel and have an expected infection rate of 4.2 (2.1, 7.6) versus
if I use the placebo with an expected infection rate of 9.5
(6.0, 13.7)?
Bruce Levin’s Answer: Confidence Limits
I think the best way to view a 95% confidence interval is that
it tells us what values of the true parameter can be *ruled out*
with 95% confidence.
Thus in the first example, where the sample effectiveness
was 39% with a 95% confidence interval of (6, 60), I would
emphasise that that means we can rule out, with 95% confidence,
any *true* effectiveness value less than 6%.
Does that mean 6% should be taken as the best estimate of
effectiveness? No. The central value of 39% is the most likely
true value. (Technically, and literally, the central value is the
maximum likelihood estimate, meaning 39% is that value of
the true effectiveness, which would render the observations
most likely to occur.)
In the second example, where the sample HIV incidence rate
for high adherers was 4.2 infections per woman per year with a
confidence interval of (2.1, 7.6), I would again emphasise that
we could rule out, with
95% confidence, an
incidence rate greater
than 7.6 infections
per woman per year,
with the maximum
likelihood estimate of
4.2 as our best estimate
of the truth. You can also state that the upper confidence limit of
7.6 rules out our best estimate of the incidence for the placebo
gel group, 9.3 infections per woman per year, as a possible true
value for the Tenofovir gel group. Similarly, the lower limit of
the placebo gel group’s 95% confidence interval, 6.0 infections
per woman per year, means we can rule out that the placebo
group’s true incidence rate is as low as our best estimate of the
Tenofovir group’s incidence rate of 4.2 infections per woman
per year.
What should be made of the overlapping confidence
intervals for the Tenofovir gel group (2.1, 7.6) and the placebo
gel group (6.0, 13.7)? My answer is: use extreme caution here!
Just because the confidence intervals overlap does NOT mean
48Comment on Stein and Susser
Special edition incorporating MujereS adelante – October 2010 ALQ
…the question really is,
what do confidence limits
mean to whom?…
Confidence limits…
Comment on Stein and Susser
Mujeres Adelante 49
ALQ October 2010 – Special edition incorporating MujereS adelante
that there isn’t a significant difference between the incidence
rates for the two groups. In fact, there IS a significant difference
between the groups, with p < 0.03.
[Explanation: Comparing endpoints of two confidence
intervals is a conservative way to declare statistical significance.
To declare significance by that method requires a separation
between the respective midpoint estimates of 1.96 times the
sum of the two respective standard errors. But the correct
way to declare significance between two estimates at the 95%
confidence level is for the difference to exceed 1.96 times the
square root of the sum of the squared standard deviations. It
can be shown mathematically that the sum of any two positive
numbers is always greater than the square root of the sum of
their squares. Therefore requiring two confidence intervals not
to overlap is too conservative, and sometimes, as in the case
of high adherers, the overlapping confidence intervals does not
overturn the statistical significance of the difference.]
FOOTNOTE:
1. Abdool Karim, Q. et al. 2010. ‘Effectiveness and safety of tenofovir
gel, an antiretroviral microbicide, for the prevention of HIV infection
in women’. In: Science, 2010:329, pp1168-1174. Comment on Stein and Susser
Bruce Levin, Ph.D., is Professor and Chair of the
Department of Biostatistics at the Columbia University,
Mailman School of Public Health.
For more information and/or comments,
please contact him at Bruce.Levin@columbia.edu.
Images from Vienna…
Mujeres Adelante 50Comment on Stein and Susser
Special edition incorporating MujereS adelante – October 2010 ALQ
Louise Kuhn
Yet, what action has followed from these scientific
data? Are there plans afoot to make the gel available
to all sexually-active women? Or even to sexuallyactive
women in high prevalence settings, where one in three
likely partners will be HIV-infected? Not to my knowledge. The
most proactive developments in this field appear to be decisions
to continue with already planned, placebo-controlled, clinical
trials of similar antiretroviral drug products, albeit used in
slightly different ways.
Sixteen years ago, the first proof concept that antiretroviral
drugs can be used around the time of HIV exposure to
prevent transmission was published.2 These results pertained
to perinatal transmission of HIV from mother-to-child and
involved a combination of maternal and infant prophylaxis.3
These results set in motion a scientific agenda that simplified
and refined the use of antiretroviral agents to prevent motherto-
child transmission so successfully that some are talking
about the ‘eradication’ of paediatric HIV infection.4 Hundreds
of thousands, perhaps millions, of infants born to HIV-infected
mothers have now been exposed to antiretroviral drugs and tens
of thousands, who otherwise would have acquired infection,
have been spared this challenging disease.
Initially, a few trials designed immediately after the first
proof-of-concept trials were placebo-controlled. This sparked
a divisive controversy about ethics.5 Whatever the merits of
the arguments at that time, it would be unthinkable today to
propose a placebo-controlled trial of any intervention to prevent
perinatal transmission. Today, many studies have been
completed examining the safety of antiretroviral drugs for
prophylaxis, as well as many
studies demonstrating
efficacy to prevent
perinatal, and now too
breastfeeding-associated,
HIV transmission6
among yet-to-be-born
and newborn infants
– the quintessential
vulnerable population.
If there are voices raised
against the ethics of
placebo-controlled trials
in women of an already proven intervention, an intervention
further bolstered by a substantial body of related research in
younger members of the same species, then I haven’t heard
of them.
HIV prevention for women…when?
Comment on Stein and Susser
New data were presented this summer demonstrating the efficacy of an antiretroviral drug-containing gel
that can be used intra-vaginally to reduce the risk of sexual transmission of HIV to women.1 Rightly, the
findings were accorded a high prominence at the International AIDS Conference in Vienna in July 2010, and
were published simultaneously in the journal Science. Front page articles in the New York Times, amongst
others, lauded the study as a breakthrough for HIV prevention.
…placebo-controlled
trials are not necessary
for development of
appropriate public health
policies…
Mujeres Adelante 51
ALQ October 2010 – Special edition incorporating MujereS adelante
Placebo-controlled trials are not necessary for development
of appropriate public health policies, as the example of postexposure
prophylaxis for healthcare workers with occupational
exposures to HIV
shows. Antiretroviral
drugs are routinely
given to doctors and
nurses with needle
stick injuries and other
invasive exposures to
HIV. A case-control
study based on passive
surveillance was
the basis for these
recommendat ions. 7
For obvious reasons, a
placebo-controlled trial has never met with much enthusiasm
from eligible participants. Rape survivors, who access betterorganised
programmes, are also routinely offered antiretroviral
post-exposure prophylaxis. I doubt whether even the most
brazen ‘evidence-based medicine’ fan would argue for the
withdrawal of these interventions.
Which comes on to the question of pragmatism – how do
we, as a public health community, trying to be scientificallyinformed,
but operating with inevitably incomplete and perhaps
even flawed data, take forward new findings that seem to present
such promise to do good? Is it by repeating placebo-controlled
trials using the exact protocols and reporting requirements of
regulatory agencies? Will dogged persistence and attention to
bureaucratic minutia win the day? I hope so, because from the
data presented from the study in South Africa8 combined with
the existing clinical, epidemiologic and basic science data on
the use of antiretroviral drugs to prevent mother-to-child HIV
transmission this looks like a winner.
We now know how to prevent HIV in women and the next
generation of studies can figure out how to get women to use it.
But right now we need to find a way to get it to women.
FOOTNOTES:
1. Abdool Karim, Q. et al. 2010. ‘Effectiveness and safety of tenofovir
gel, an antiretroviral microbicide, for the prevention of HIV infection
in women’. In: Science, 2010:329, pp1168-1174.
2. Connor, E.M. 1994. ‘Reduction of maternal-infant transmission of
human immunodeficiency virus type 1 with zidovudine treatment’. In:
New England Journal of Medicine, 1994:331, pp1173-1180.
3. Ibid.
4. Mofenson, L.M. 2010. ‘Antiretroviral drugs to prevent breastfeeding
HIV transmission’. In: Antiviral Therapy, 2010:15, pp537-553.
5. Lurie, P. & Wolfe, S.M. 1999. ‘Science, ethics, and future of research
into maternal-infant transmission of HIV-1’. In: Lancet, 1999:353,
pp1878-1879.
6. Mofenson, L.M. 2010. ‘Antiretroviral drugs to prevent breastfeeding
HIV transmission’. In: Antiviral Therapy, 2010:15, pp537-553.
7. Case-control study of HIV seroconversion in health-care workers
after percutaneous exposure to HIV-infected blood: France, United
Kingdom, and United States, January 1988-August 1994. In: MMWR
Morb Mortal Wkly Rep 1995:44, pp929-933.
8. Abdool Karim, Q. et al. 2010. ‘Effectiveness and safety of tenofovir
gel, an antiretroviral microbicide, for the prevention of HIV infection
in women’. In: Science 2010; 329, pp1168-1174.
Comment on Stein and Susser …
how do we, as a
public
health community, trying to
be scientifically-informed,
but operating with inevitably
incomplete and perhaps
even flawed data…
Louise Kuhn is with the Gertrude H. Sergievsky Center,
College of Physicians and Surgeons; and Department of
Epidemiology, Mailman School of Public Health,
at Columbia University. For more information
and/or comments please contact
her on kuhnlou@sergievsky.cpmc.columbia.edu
Mujeres Adelante 52Comment on Stein and Susser
Special edition incorporating MujereS adelante – October 2010 ALQ
Tim Farley and Liz McGrory
The results of the CAPRISA 004 trial of 1% Tenofovir
gel were greeted with cheers, applause and a
standing ovation when announced at the Vienna
AIDS conference in July2. After nearly 20 years of
research, CAPRISA 004 provided the first evidence
that the use of a vaginal gel containing an
antiretroviral drug (Tenofovir) can prevent HIV
infection in women.
The trial demonstrated that 1% Tenofovir gel
reduced women’s risk of acquiring HIV by 39%
compared with the placebo, with the reduction in
risk reaching 54% among women who reported using it most
consistently. The results were robust and consistent across a
range of different analyses, with no apparent safety concerns.3
The trial marked the first time that a vaginal microbicide has
shown effectiveness against HIV in a clinical trial. As such,
this represents a major breakthrough in identifying a new
method of HIV prevention and a potential new option for
women to protect themselves.
There was vigorous debate in Vienna that has continued
in other fora on whether or not and how the product can
be made available to women most in need, what additional
research is required to ensure licensure and effective roll-out,
and how the product could best be promoted and distributed.
Stein and Susser argue strongly on ethical and moral grounds
in favour of rapid roll-out of 1% Tenofovir gel with careful
follow-up to monitor for any side effects or other problems.
Others have argued just as forcefully that the result must first
be confirmed in a further placebo-controlled trial. How can
these differing views be reconciled?
There is no single, correct answer to these difficult
questions, but a careful weighing of priorities is necessary.
We offer below some additional issues that need to be
considered.
Generalizability: The CAPRISA 004 trial was conducted
in two communities in KwaZulu Natal, one urban and the
other rural. In the absence of confirmatory data, we cannot be
A careful weighing of priorities…1
Comment on Stein and Susser
Mujeres Adelante 53
ALQ October 2010 – Special edition incorporating MujereS adelante
sure that a similar protective effect will
be seen elsewhere. Information on the
safety, effectiveness and acceptability of
the product in other settings with different
epidemiologic and social profiles will be
critically important before 1% Tenofovir
gel is used widely for HIV prevention.
Precision of the estimated effect:
The CAPRISA 004 trial showed a 39%
reduction in HIV incidence, with a
confidence interval ranging from 6% to 60% reduction.
While the true effectiveness is most likely near the point
estimate, we cannot exclude effectiveness near the lower
end of the confidence
interval. We need a
better estimate of the
true effectiveness so
that women, providers,
and national and
international policy
makers have a clear
idea of the level of
protection. This can
better inform decisions on how the gel fits into individual and
community HIV prevention programmes and strategies.
Risk compensation: The potential for risk compensation
is a major concern with all new approaches to HIV prevention,
particularly those that are partially effective. In the case of
medical male circumcision to prevent HIV infection in men,
the evidence comes from three independent randomized
trials4, with a pooled effect of 50% reduction in HIV
incidence (95% confidence interval 28% to 66%).5 The lower
confidence limit is sufficiently far from
zero that modelling suggests that even with
very large reductions in condom use there
is an estimated net beneficial impact for
individuals and communities.6 During the
international policy discussions and efforts
to implement medical male circumcision and
have an impact on the HIV epidemic, it was
clear that there would have been very little
interest to implement programmes if the
degree of protection had been substantially lower. More and
better data than are currently available from the CAPRISA
study are required to ensure that the effectiveness of 1%
Tenofovir gel is sufficiently large that its overall benefits will
not be offset by any potential behaviour changes.
Scale up: The challenges in scaling-up medical male
circumcision programmes since the evidence of effectiveness
was published in 2007 highlight another compelling reason
why stronger data are needed. Despite convincing evidence
from three independent trials, a wealth of supporting
epidemiological and
demographic data
and good biological
support, progress
in medical male
circumcision scale-up
is lamentably slow.7 For
a new pharmaceutical
product the views of
national drug regulatory
authorities are absolutely critical, as they determine whether
or not a product is licensed. But other actors are also critical:
Comment on Stein and Susser
…a careful weighing of
priorities is necessary…
…we need a better
estimate of the true
effectiveness…
…a potential new option for
women to
protect themselves…
Mujeres Adelante 54Comment on Stein and Susser
Special edition incorporating MujereS adelante – October 2010 ALQ
programme managers
must be convinced that
a new intervention is
feasible, that investing
HIV prevention
resources in the new
intervention will be
cost-effective compared
with other interventions,
ministries of health
and finance must be
prepared to allocate or
re-allocate resources,
bilateral and multilateral
donors must
feel confident in the product and that the investment is
worthwhile, and individual users must make the effort and
commitment to access and use the new product. Unless all
these actors are convinced and aligned, the product will
fail to achieve the widespread availability and use we all
hope for.
So in the context of these uncertainties is it ethical to
implement a randomized controlled trial in which some
women are allocated the active product and others the
inert placebo? Stein and Susser correctly point out that the
information provided to participants in future trials must
include the new data generated by the CAPRISA study.
Previously there were only data from animal models and
laboratory studies that the product most likely reduces
their risk of HIV infection; now there are also data from
women. All research involves a careful balancing of risks
and benefits. Frequently the risks are borne by the individual
while the benefits accrue to society. However in placebocontrolled
microbicide trials there are also well-documented
benefits for the individual participant, including improved
care, and intensive counselling and help with reducing the
risk of HIV infection. In addition, there is an expectation
that the product, once shown safe and effective, will be
made available preferentially to former trial participants and
their communities. It is the job of independent ethics review
committees to ensure that the balance of risks and benefits
is reasonable, and the information provided to potential
participants is accurate and understandable so that they can
make an informed decision whether or not to participate in
…further placebo-controlled
studies is essential if the
product is to be supported,
marketed and used by the
large number of women
at risk…
Mujeres Adelante 55
ALQ October 2010 – Special edition incorporating MujereS adelante
the study. If a potential participant is not comfortable with
the balance of risks and benefits, she is not obliged to enrol.
If during follow-up an actual participant no longer feels the
balance of risk and benefits to her is appropriate, she can tell
the study team she wants to discontinue.
We are of the view that confirmation of the CAPRISA
result in further placebo-controlled studies is essential if
the product is to be
supported, marketed
and used by the large
number of women
at risk who have
few alternative ways
of reducing their
vulnerability to HIV
infection. Exactly
what form any
confirmatory studies
should take is, at the
time of writing, being
vigorously debated.
Key design issues
include assessing different dosing regimens, determining
safety and effectiveness among women 16 – 17 years old,
and expanding the evidence of safety and effectiveness
to women living in different epidemiological and social
contexts. There will be challenges in planning and
implementing such trials, which we must face together
if the ultimate aim of the research is to be realised – an
urgently needed new tool for women to reduce their risk of
HIV infection.
FOOTNOTES:
1. The views expressed are those of the authors and do not necessarily
represent those of the World Health Organization.
2. See webcast at http://globalhealth.kff.org/AIDS2010/July-20/Safetyand-
Effectiveness.aspx
3. Abdool Karim, Q. et al. 2010. ‘Effectiveness and safety of tenofovir
gel, an antiretroviral microbicide, for the prevention of HIV infection
in women’. In: Science, 2010:329, pp1168-1174.
4. Auvert, B. et al. 2005.’Randomized, controlled intervention trial of
male circumcision for reduction of HIV infection risk: The ANRS
1265 Trial’. In: PLoS Medicine 2005; 2(11), e298; Gray, R.H. et
al. 2007. ‘Male circumcision for HIV prevention in men in Rakai,
Uganda: A randomised trial’. In: Lancet 2007:369, pp657-666;
Bailey, R.C. et al. 2007. , Moses S, Parker CB, et al. 2007. ‘Male
circumcision for HIV prevention in young men in Kisumu, Kenya: A
randomised controlled trial’. In: Lancet 2007:369, pp643-656.
5. Siegfried, N. et al. 2009. ‘Male circumcision for prevention of
heterosexual acquisition of HIV in men’. In: Cochrane Database of
Systematic Reviews 2009:2, CD003362.
6. UNAIDS/WHO/SACEMA Expert Group on Modelling the Impact
and Cost of Male Circumcision for HIV Prevention. 2009. ‘Male
circumcision for HIV prevention in high HIV prevalence settings:
What can mathematical modelling contribute to informed decision
making?’. In: PLoS Medicine 2009:6(9), e1000109.
7. WHO/UNAIDS. 2010. Progress in male circumcision scale-up:
country implementation and research update. Geneva, Switzerland:
World Health Organization and Joint United Nations Programme on
HIV/AIDS.
Comment on Stein and Susser
Tim Farley is with the World Health Organization,
Geneva, Switzerland, and Liz McGrory is based in Nyack,
NY, USA. For information and/or comments, please
contact Tim at farleyt@who.int.
…it is the job of independent
ethics review committees
to ensure that the balance
of risks and benefits is
reasonable…
Mujeres Adelante 56Methods women can use
Special edition incorporating MujereS adelante – October 2010 ALQ
(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.
FOOTNOTE:
1. Excerpt from an article published in the Mujeres Adelante on 21 July
2010. Susser, I. 2010. ‘Finally: A Microbicides Success’. In Mujeres
Adelante, 21 July 2010, pp1-2. [www.aln.org.za]
Ida Susser
Microbicides were the dream of Zena Stein and
promoted with Anke Ehrhardt from the Columbia
University HIV Centre, 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
…scientific research is only
as good as the concepts
which drive it…
Microbicides…1
Methods women can use
Ida Susser is a Professor of Anthropology at the
City University of New York Graduate Centre.
Mujeres Adelante 57
ALQ October 2010 – Special edition incorporating MujereS adelante
Luisa Orza
The Women’s Networking Zone (WNZ) at the XVIII
International AIDS Conference (IAC), in Vienna, in
July 2010, marked 10 years of women’s parallel
organising at International AIDS Conferences. The
parallel organising that is a regular feature of recent
IAC events began at Durban in 2000, when the
level of exclusion felt by the local, highly affected
community, from the official Conference programme,
led to protests and spontaneous organising outside
of the conference perimeters.
‘Women at Durban’ was brought about through the cooperation
of the International AIDS Society Women’s Caucus and the
International Community of Women Living with HIV and AIDS
(ICW). It facilitated the participation of local women in the
conference, moving away from the traditional style of academic
and evidence-based sessions, and focusing more on women’s
own experiences and realities of treatment access, gender-based
vulnerabilities, and prevention of vertical transmission, among
other issues, narrated and interpreted by themselves. Fittingly,
the theme of the Durban IAC was ‘Breaking the Silence’.
10 years on from that first experience, and five IACs
later, the Global Village is now an officially recognised
community-driven parallel organising space, supported by
the International AIDS Society, and dedicated to providing
access to, and participation of the local community in the
host city of the biennial Conference. The Global Village
aims to facilitate dialogue and exchange between the local
community and the international delegates. Increasingly
it also appeals to an international community of activists,
and represents an alternative conference space not only (or
necessarily at all) serving the local community. This lends
itself to a less formal style of organising, with a focus on
human rights. It centralises marginalised populations and
issues; commitment to the meaningful participation of people
living with HIV, and the concept that those most affected (by
any issue) are those most key to finding solutions; and
small-p-political actions, as well as research-and-evidence
based conversations.
Celebrating 10 years of pa rallel women’s fora
Why women organise
women’s organising…
Celebrating 10 years of parallel women’s fora
Mujeres Adelante 58Celebrating 10 years of pa rallel women’s fora
Special edition incorporating MujereS adelante – October 2010 ALQ
Women’s Netw ork Zone…10 years lat er
The Women’s Networking Zone (WNZ) convened by
The ATHENA Network, has developed as a physical space,
political entity, network and social movement since ‘Women
in Durban’, evolving through Women at Barcelona/Mujeres
Adelante (‘Women Moving Forward’) 2002, Women at Bangkok
2004, to the Women’s Networking Zone at Toronto, 2006 and
at Mexico City 2008, to the WNZ2010 at Vienna, coordinated
by ATHENA and the Salamander Trust. The WNZ is now an
established element of the IAC, and WNZ2010 constituted
one of the largest spaces in the Global Village, comprising an
integrated Young Women’s Networking Zone and the World
Pulse Booth1, brought about by a partnership of 26 organising
entities, with a programme shaped out of over 50 proposals,
and incorporating the participation of an estimated 75 different
organisations or networks.
The groundwork and organising in preparation for Vienna
2010, led by Tyler Crone of ATHENA Network, Alice Welbourn
of Salamander Trust,
Wezi Thamm of ICW,
and Harriet Langanke
of Gemeinnützige
Stiftung Sexualität
und Gesundheit
(GSSG) took months.
The five-day event
was planned by
seven Working
Groups, a ten-women Steering Committee, and a four-women
Coordinating Team, working between half and full time for
four months leading up to the conference. Significant groundlaying
preparations included two international meetings, for
over a year prior to the event.
The event itself was managed by a team of approximately 50
voluntary staff, hosts
and translators. The
ATHENA Network and
AIDS Legal Network
(ALN) produced a
daily newsletter on
women’s rights and
HIV, Mujeres Adelante,
with further voluntary contributions from WNZ partners
and supporters, and produced by a team of women led by
Johanna Kehler of the ALN, who worked tirelessly to
ensure its daily publication and distribution.2 Further media
efforts were led by Anca Nitulescu, Harriet Langanke and
Alice Welbourn, via on-line journals, blogs and press media.
The WNZ also provided a host area and supported the efforts of
Harriet Langanke of GSSG in piloting a ‘Twinning Project’ to
bring pairs of women from Germany and countries from Eastern
Europe and Central Asia to the conference. The WNZ also saw
the launch of Women in Europe and Central Asia Region plus
(WECARe+3), a network of women living with HIV.
In short, WNZ2010 was brought about through the enormous
efforts of a large number of women, building on 10 years of
similar organising, and carried, at least in part, on the tide of
that historical momentum. In the meantime, the IAC organising
committees have become significantly more inclusive of women;
in the lead-up to Vienna 2010, women outnumbered men among
the co-chairs of the track committees for the first time ever, and
women’s organisations were well represented on the Conference
…no denying the historical
need for parallel
(and mainstream)
women’s organising…
…less formal style of
organising, with a focus on
human rights…
Mujeres Adelante 59
ALQ October 2010 – Special edition incorporating MujereS adelante
Coordinating Committee. Gendered issues,
such as violence against women, sexual and
reproductive rights, and sex work, are topics
that now regularly appear in mainstream fora,
with ever-growing acknowledgement and
uptake of gender inequality and human rights
gaps and violations as primary drivers of the
pandemics. So, while there is no denying the
historical need for parallel (and mainstream)
women’s organising, it is pertinent, in
the aftermath of these efforts to ask: ‘Do we still need to
do this? Why?’4
Philosophy of organising
The WNZ philosophy of organising is based on core
themes and principles of feminism, which recognises gender as
a central component of relationships of power, rather than an
issue of service provision or individual deprivation. In order to
acquire a full understanding of how power
is organised, it is necessary to recognise
and provide space for diversity, the fact that
women have multiple identities and huge
difference of experiences over time and space,
among which interlocking commonalities
of experienced oppression may be found.
These lie in everyday experience, which
feminism recognises as a legitimate source
of knowledge, and can be brought to the
table through the equally legitimate medium of voice.
Voice acts as the starting point, not for exposure, exploitation
and manipulation – as has been seen through the ‘using’ of
(for example) personal testimony as a means to other, more
powerful, groups’ political ends – but rather, for an on-going
process of dialogue, conversation, linking and informing in
progress across time and space.
The telling of, listening to, reflecting on, and analysis
of personal stories ‘from the ground up’
are potentially empowering … strategies
drawn from women’s organizing.5
The structure of sessions in the WNZ
is organised around these principles of
inclusivity, voice and experience – both
through more ‘formal’ facilitated dialogue
sessions, and more ‘interactive’ or story/
narrative-based presentations and film/
audio documentaries. The design and
furnishing of the WNZ are also developed
with these principles in mind – there is
Celebrating 10 years of pa rallel women’s fora
…that those most affected
(by any issue) are those
most key to finding
solutions…
Mujeres Adelante 60Celebrating 10 years of pa rallel women’s fora
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no formal stage and participants can sit more informally
on cushions on the floor, in circles, and on sofas and/or
on chairs if they wish. Thus, through scheduled sessions,
targeted informal and formal conversations, and a welcoming
space, the WNZ encourages networking, inter-regional,
cross-sectoral and cross-generational dialogues, to enable
and further women’s engagement around women’s issues;
thereby creating an informal, dynamic and fun atmosphere
through which to engender lively, intimate and cutting
edge debates.
Someone from UNDP on Austrian Radio described the
main conference as ‘death by power point’, which I think
is a great description of some of the main conference
sessions! A lot of ‘talking-at’ gets done there, whereas
in the WNZ, there is much more engagement between
speakers and audience at a much more intimate level.
[WNZ coordinating team member, UK]
At the same time, the WNZ, while welcoming men,
recognises the need for women to claim spaces, to organise,
and to raise issues without fear of being ridiculed, co-opted
or undermined.
Women must have a space to organise in order to claim
power, as well as discuss their own issues and have
important dialogues. [WNZ presenter, USA]
Women’s spac es and
voices
This strong grounding in
feminist themes and principles
creates an enabling environment
for meaningful participation,
developing or deepening a political
consciousness, or renewing
and revitalising
commitment around
women’s rights
issues, which simply
acknowledging these
issues may not do in
and of itself. Issues,
such as violence
against women
and sexual and
reproductive rights,
have gained a lot of currency over recent years and are edging
their way into mainstream fora and agendas. However, these are
frequently accompanied by confusing or missing analyses of
the issues, leaving women being portrayed as victims, lacking
in personal agency, or often as agents of reproduction, valuable
only as producers of the next generation.
I think a lot of the conversations around gender [based
violence] are very…it’s almost like the AIDS world has
hooked into that because it’s relatively easy for them.
[WNZ visitor, South Africa]
And despite the rhetoric, women’s rights issues do continue
to be omitted, disregarded, or only partially addressed. In a
…gender as a central
component of relationships
of power…
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recent study6, researchers found that fewer than a fifth of papers
published by the International AIDS Society in two leading
HIV journals included research that was clearly relevant to
women, often failing to include a detailed gender analysis,
disaggregate data by sex, or consider the implications of a
problem or proposed solution on women. The WNZ counters
this obvious gap, providing what is perceived as a safe space in
which to challenge personal/political, public/private dichotomies
and grapple with women’s rights issues.
The opportunity to explore issues, which are key to women’s
rights and yet are not addressed in the main conference,
is essential. As Shirin Heidari, Editor of the IAS
Journal said in one WNZ session: ‘Absence of evidence
does not equal evidence of absence’ – and yet many in
the main conference often assume that this is the case.
[WNZ coordinating team member, UK]
At the same time, the WNZ tries to keep the level of debate
accessible, through a range of comprehensive and coherent
messaging and media.
I like our zone – the women’s network zone – because…
all things here have meanings that make a connection
to our rights and that we have rights. [Twinning Project
participant, Tajikistan]
Being a woman activist on the international stage of HIV
and AIDS is an isolating business; there is no money in it, you
are often working on your own and pushing forward an agenda
of issues other people would rather not talk about, in an era
of ever-increasing resource constraints, and ever-expanding
competition for what resources are available. When other
marginalising factors come
into play, such as living
with HIV, being a person
who uses drugs or has a
‘different’ sexual or gender
identity, or who has been
in prison, or earns a living
through sex work, or, or,
or… the stakes are higher
and the odds for isolation
as a woman activist even
shorter.
Working in collaboration
with positive women’s
Celebrating 10 years of pa rallel women’s fora
…women have multiple
identities and huge
difference of experiences
over time and space,
among which interlocking
commonalities of
experienced oppression
may be found…
Mujeres Adelante 62Celebrating 10 years of pa rallel women’s fora
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networks and organisations, the WNZ remains
one of the (if not the) only significant spaces
within the International AIDS Conference that
explicitly, consistently and actively promotes
positive women’s leadership at the same time as
celebrating inclusivity and diversity.
It is also a safe space for positive women to
meet other positive women while not being
exclusive to any minority. On the contrary,
a space that is open to all diverse groups of
women and that is what makes it safe and
very important!
[WNZ steering committee member, Germany]
Workshops, films, story telling/performance narratives,
were among the media employed in the WNZ2010 for
highlighting issues and challenges faced by women living
with HIV, and providing a platform for exchange. The value
of hearing the voices of women living with HIV, and creating
opportunities to network among women living with HIV,
was felt strongly by both HIV positive and HIV negative
or untested women participating in the WNZ2010, and also
seemed to be an existing and recognised feature of the WNZ.
The strong representation of women living with HIV in the
Zone ‘strengthens women and gives them courage and hope’
(WNZ visitor, UK). It also represents another of the points
where the personal and the political meet through the sharing
of personal narratives.
There is a huge sense of solidarity around universal issues
facing us all wherever we live in the world. It is always
wonderful to feel that shared sense of identity as women
share many ‘aha’ moments of recognition of one’s self in
others’ stories. [WNZ coordinating team member, UK]
And, as mentioned above, the creation of an enabling
environment for meaningful participation also constitutes an
important political commitment and practice.
If we are talking about HIV and AIDS (or anything!) the
people who are infected and affected need to be given
space to speak for themselves, and need to be brought into
decision-making and agenda setting in a meaningful way.
[WNZ presenter, USA]
The potential of positive women’s networking was a subtheme
of the WNZ programme, with five sessions that focused
directly on the potential of networks of women (including mixed
status; HIV positive and HIV negative or untested women) to
bring about change. These explored the values, benefits and
(potential) outcomes of women’s organising through networks,
and networks as tools for civil society mobilisation. The
realisation of that potential is perhaps the primary objective of the
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WNZ as a networking space, linking several
of the areas that have been explored above.
Networking occurs among individuals,
but may have impacts at personal and
organisational/institutional levels, and
at the level of movement building. At
the individual level, networking can be
validating and reduce isolation for women
activists working in an area that is often
little understood and can bring them into
confrontational or conflict situations. The WNZ2010 sessions
on the launch of the WECARe+ network and the Twinning
Project amply illustrate this, and indeed the Twinning Project
was conceived precisely to facilitate networking between women
who otherwise may have faced an experience of isolation and
impotence at the vastness of the International AIDS Conference.
The WNZ aims to provide a space that is both stimulating and
‘safe’; welcoming and engaging; and that lends itself to building
and deepening dialogue. By reducing the sense of isolation, women
are mutually empowered, revitalised and supported to continue
their work and expand and deepen their potential as activists
and advocates.
The WNZ [is] a special place…where women from all
ages and all countries have a safe space for networking,
discuss, engage and feel renovated and re-committed
with the response to HIV. [WNZ programme committee
member, Mexico]
Many of the women involved in the WNZ as organisers,
contributors, volunteers or visitors are long-term women’s rights
activists in the field of gender and HIV, and/or international
development more broadly. Strong networks
and alliances often already exist between them;
the WNZ as a physical space at international
conferences constitutes an opportunity
to strengthen and deepen these alliances,
networks and friendships. However, the WNZ
continues to attract new visitors, presenters
and supporters, in part due to the change in
regional and thematic focus brought about by
the different conference locations; in part due
to advances and emerging issues in the field; and in part due to
Celebrating 10 years of pa rallel women’s fora
…either no laws that
protect women from
violence, or where laws
exist the mechanisms are
inadequate to enforce their
implementation…
Mujeres Adelante 64Celebrating 10 years of pa rallel women’s fora
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a growing recognition of the gender drivers of the epidemic and
the increasingly urgent need to address these.
After 10 years of women’s organising at the IAC, the
WNZ as it stands today represents something beyond a
networking event or partnership, but now lies at the heart of
movement-building around women and HIV – by bringing
together women from
networks, organisations,
agencies and institutions
working on similar
topics; through
deliberate efforts to
create continuity from
one WNZ event to the
next; and by maintaining
links and collaborations
and the ‘conversation
in progress’ working
through the ATHENA
Network and other
global and regional
networks and listservs.
The principle of local organisation around the WNZ
ensures that the drive and leadership of each event is taken-up
by different organisations and individuals at each conference.
Previous coordinators or partners lend experience, guidance
and input into the process, thereby building always on what has
gone before and strengthening the movement with both new and
longer-term partners.
The principle of consultative process means that planning
for the next conference begins almost immediately after the end
of the previous one, opening up an 18-month-to-two-year period
over which new alliances are consolidated around the WNZ and
the movement kept alive.
So are these processes and efforts of organising still worth
it? From the responses to WNZ2010: A resounding YES!
Keep this space – there’s nothing else like it here!
[WNZ visitor, anonymous]
FOOTNOTES:
1. World Pulse is a 3,000-strong on-line community forum that looks at
global issues through the eyes of women. For more information go to
www.wordpulse.org
2. To obtain copies of the Mujeres Adelante edition,
please go to www.aln.org.za.
3. For more information on both the WNZ and WECARe+
go to www.wecareplus.net or www.womeneurope.net
4. Italicised quotes used in the remainder of this article are taken from
questionnaires and interviews used in the evaluation of the WNZ2010,
unless otherwise attributed.
5. Maguire, P. 2001. ‘Feminisms and Action Research’. In: Reason,
P. & Bradbury, H. (Eds) 2006. Handbook of Action Research, Sage
Publications, London, p64.
6. Collins, E., Hale, F., Gahagan, J., Binder, L. & Crone, T. 2010.
‘Gendered Neglect: How relevant is HIV research to women?’. Poster
Presentation 6172, International AIDS Conference, Vienna 2010.
Luisa Orza was a joint coordinator of WNZ2010 as a
Salamander Trust Associate with Amandine Bollinger
of Salamander Trust. For more information and/or
comments, please contact her at luisa.orza@gmail.com.
…by reducing the sense
of isolation, women are
mutually empowered,
revitalised and supported
to continue their work and
expand and deepen their
potential as activists and
advocates…
Mujeres Adelante 65
ALQ October 2010 – Special edition incorporating MujereS adelante
Sarah Degnan Kambou, Katherine Fritz,
Reshma Trasi
Social science research conducted across the globe
describes how the underlying causes of poverty and
gender inequality heighten the vulnerability of women
and girls to HIV. Faced with high rates of violence, poor access
to school, health information, or legal services, women and girls
are often at a disadvantage when managing their risk to HIV.
Global funders recently called for a more efficient use of
resources to better serve the healthcare needs of women. They
advocate integrating HIV prevention and treatment services
with other reproductive health and family planning services.
This is a highly desirable goal. Yet, even if countries improve
their health systems, this alone will affect only certain aspects
of women’s vulnerability to an epidemic fuelled by underlying
legal, social and economic inequality.
More must be done. We believe that a meaningful, effective
AIDS response, at its core, demands an understanding of how
women live. Here are our recommendations:
• Understand who women are and what they need. Services
often focus on women’s singular needs, such as food or
livelihoods, or their singular identities as mothers or sex
workers. They are women and mothers. They are sex
workers and loving partners. They are at risk of hunger
and HIV.
• Craft a response that recognises that women live every
day in relationships with families, communities and
institutions – connections that influence their HIV risk.
• Let women speak for themselves and articulate their
needs. This means intentionally placing women in
leadership positions – especially those living with HIV
– on national and international decision-making bodies,
as well as ministries and committees that address issues
affecting women.
• Make policies work. National HIV responses must have a
multi-faceted vision that truly addresses women’s needs.
Government leaders must mandate, coordinate, fund and
be accountable for strategic plans that ensure women’s
right to full, healthy lives.
It’s time we did better by women. Let’s get it right – right now
.
FOOTNOTES:
1. An earlier version of this article was published in the Mujeres
Adelante on 18 July 2010. Degnan Kambou, S., Fritz, K. & Trasi, R.
2010. ‘Meet women where they live: Creating a meaningful, effective
AIDS response for women’. In: Mujeres Adelante, 18 July 2010, p2.
[www.aln.org.za]
Meet women where they live…
Meet women where they live…1
Creating a meaningful, effective AIDS response for women
HIV and AIDS have been part of the global landscape for nearly 30 years, and will continue to impact the lives of
millions of people, particularly women and girls, far into the future. Policy makers, programme managers and
service providers have long been aware that women and girls are uniquely vulnerable to HIV infection.
Sarah Degnan Kambou, Katherine Fritz and Reshma Trasi
are from the International Centre for Research
on Women (ICRW). For more information and/or
comments, please contact Reshma at rtrasi@icrw.org.
Mujeres Adelante 66A new network for positive women…
Special edition incorporating MujereS adelante – October 2010 ALQ
Luisa Orza
‘I’m surprised to be sitting here alone’, said a
bemused Andrea von Lieven, from the speakers’
couch at the launch of a new network for Women
living with HIV in Europe and Central Asia
(WECARe+) on 20 July 2010.
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 seven-language Women in Europe website
(www.womeneurope.net), 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
policy-making’.
A new network for positive women…1
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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 side-by-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 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 gender-based violence; and only half had chosen to
reveal their status to their partner.2
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.
FOOTNOTES:
1. An earlier version was published in the Mujeres Adelante on 21 July
2010. Orza, L. 2010. ‘Women’s Realities: A new network for positive
women in Europe and Central Asia – WECARe+’. In:
Mujeres Adelante, 21 July 2010, p4. [www.aln.org.za]
2. Further results from the survey can be found on
www.womeneurope.net.
A new network for positive women…
Luisa Orza is a women’s rights and HIV activist and
the WNZ coordinator. For more information and/or
comments, please contact her at luisa.orza@gmail.com.
…the conference is just a
start…to help us to not be
invisible any more…that’s
what networks for positive
women are for…
Mujeres Adelante 68Legislating sex work
Special edition incorporating MujereS adelante – October 2010 ALQ
Kate Griffiths
Sex work advocates gathered today in a mini-session
to assess the impact of sex work legislation both in
countries around the world and across time. In a
historical overview by the Lawyers Collective’s
Tripti Tandon, it became clear that throughout its
history, sex work legislation has been determined less
by results than by political pressure, and has a long
history of being tied to gendered moralities, public
health, feminist concerns, and drug use.
Today’s sex work legislation is no different, with
evidence about effectiveness often taking a backseat
to fears of trafficking, conservative religious
morality or misguided efforts to protect victims of trafficking
and violence. Drawing on evidence from British history, as well
as the experiences of sex workers and sex work organisations in
India, China, the UK, New Zealand and Sweden, the panellists
argued that decriminalisation and sex workers’ self-organisation
is the most effective model for halting the spread of HIV, as well
as for protecting the human rights of women and sex workers.
Tandon traced the history of sex work legislation back to
Cannon law of the Catholic Church, which considered prostitution
a sin, like all sex outside of marriage. Criminal penalties did not
apply, however. With industrialisation in England, public order
became a concern and a ‘crackdown’ on street workers and socalled
‘bawdy houses’ represented the first criminalisation of
sex work. In the 1860’s this model was replaced with a public
health focus as the military became concerned with protecting
the health of soldiers, and therefore passed several iterations of
the Contagious Diseases Act, which implemented mandatory
testing and imprisonment in hospitals for sex workers. Not long
The power of organised communities…1
Legislating sex work
Mujeres Adelante 69
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after, these regulations came under attack by feminists of the
age, not for violating the rights of sex workers to consent to
medical treatment and testing, but because by regulating sex
work, advocates felt that the government was sanctioning abuse
and violence against women. Ultimately, the law was repealed
and replaced with codes based on strict Victorian morality,
which resulted in greater stigmatisation, clandestine work, and
pimping and police abuse of sex workers.
Today, sex workers’
rights face similar foes
and sex work legislation
produces similar results.
In the last few years, not
only some feminists,
but also some religious
communities have
rallied opposition to
‘trafficking’ or nonconsensual
sex work,
involving the kidnapping of foreign women. While sex worker
organisations argue that trafficking is rare,
such campaigns can result in the adoption
of harsh legislation that makes sex workers
more vulnerable to HIV, but also to
homelessness, rape, and poverty.
Global Fund researcher Swarup Sarkar
has identified three kinds of strategies
that can reduce HIV
transmission via sex work
(which he argues is the
most cost-effective point
of intervention.) These
include state-led punitive
measures, such as seen
recently in Thailand and
the Philippines; NGO-led service delivery; and finally sex
worker self-organisation as seen in India. Of the three, long-term
improvement in infection rates have been achieved only through
the latter, supporting activists’ contention that criminalisation
and punitive approaches do not achieve public health goals. In
one example from Norway, self-organised sex workers were
able to reduce the spread of a virulent strain for herpes by
temporarily halting sexual practices, such as protected oral sex,
until the outbreak subsided.
In China, where sex work legislation is draconian, calling
for punishment of forced labour, sex workers from Phoenix in
Yunnan point out that criminalisation of drug use is also a major
factor in isolating sex workers in ways
that increase their vulnerability. Drug
users there face mandatory HIV testing at
random and are particularly vulnerable to
police abuse, if they are migrant workers,
who are thus unregistered in the province.
In the modern day UK, a new wave
Legislating sex work
…decriminalisation and
sex workers’
self-organisation is the
most effective model for
halting the spread
of HIV…
…criminalisation and
punitive approaches do
not achieve public health
goals…
Mujeres Adelante 70Legislating sex work
Special edition incorporating MujereS adelante – October 2010 ALQ
of punitive legislation targets clients rather than sex workers,
reminiscent of the ‘Swedish model’. These laws nevertheless
have similar impacts on sex workers to the older versions of
the 1860’s forcing women into street work by criminalising
landlords and to greater clandestine work making them more
vulnerable to violence, including rape. This vulnerability has
been demonstrated in a string of murders of sex workers known
as the Bradford murders. According to Pye Jakobbsson, the
‘Swedish model’ in Sweden has a similar effect. One friend and
street worker, she mentioned, claimed that ‘before the law I was
never raped. After the law, I can’t count the number of rapes’.
Despite arguments that the law protects women, women find
little support from the police and experience increased stigma.
An alternative to models which criminalise clients is
decriminalisation, as practiced in New Zealand since 2003.
Presented by Tim Bennet, former NZ parliamentarian, the
impact of the law, which legalises sexual
contact between consenting adults, is increased
safety, condom use and lowered risk of
spreading HIV.
Achieving decriminalisation required
cooperation between sex workers, feminists,
LGBTQ organisations and health officials, as
well as members of parliament. As the history of such measures
and the epidemiology of health and sex work demonstrate, it is
the power of organised communities, not merely great evidence,
that can achieve good law, better health and secure the rights of
women and sex workers.
FOOTNOTES:
1. An earlier version was published in the Mujeres Adelante on 23 July
2010. Griffiths, K. 2010. ‘Special Report: Legislating sex work’.
In: Mujeres Adelante, 23 July 2010, pp6-7. [www.aln.org.za]
Kate Griffiths is a writer and ethnographer based in
Durban, South Africa. For more information and/or
comments, please contact her at kategrif@gmail.com.
Mujeres Adelante 71
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Mabel Bianco
The networks and organisations brought together by
the coalition represent diverse collectives of women,
including women living with HIV, sexual and
reproductive health and rights, human rights and
especially women’s rights activists, sex workers,
female youth and adolescents, drug users, lesbians
and transgender and transsexual people.
The Vienna conference aimed especially to
highlight the critical connections between HIV
and human rights, so its slogan was ‘Rights Here,
Right Now’. WA used this theme to call specific
attention to the human rights of women and
girls, developing and promoting a full agenda of
activities that brought women’s and girls’ issues
and voices to the heart of the conference.
As a result of WA’s advocacy during the
organisation of the conference, one of WA’s most important
achievements was the incorporation of women speakers with
a gender perspective in all areas of the conference programme and
the achievement of a gender balance of speakers in almost all
the sessions. In the Plenary sessions alone, half of the speakers
were women and the proportion of women speakers representing
women’s perspectives in other sessions was almost as high,
averaging forty percent.
Another important achievement was the thematic balance
of the sessions, with greater inclusion of women’s issues than
in previous conferences. The issue that received the greatest
attention was women’s sexual and reproductive health and rights.
Another success of WA was to incorporate violence against
women as a plenary session theme, as well as in many other
sessions, and to appoint as speakers many feminist women with
a gender perspective altogether with human rights experience –
a ‘novelty’ in these conferences. Although ‘abortion’ was only
addressed in a few sessions, even this marks a great achievement
since it had never been incorporated before, but it needs to be
strengthened in the next conferences. However, lesbians and women
who have sex with women (WSW) were still not incorporated
Strengthening the women’s agenda at AIDS 2010
Women ARISE!
Strengthening the women’s agenda at AIDS 2010
The Women ARISE (WA) coalition, made up of a diversity of 39 women’s/AIDS networks and organisations from all
regions of the world, was created to increase the visibility and presence of the diversity of women and girls, and to
bring their voices and perspectives to Vienna 2010.
Mujeres Adelante 72Strengthening the women’s agenda at AIDS 2010
Special edition incorporating MujereS adelante – October 2010 ALQ
into the main conference programme, but at least we were able
to incorporate a session in the Human Rights Networking Zone,
which is not sufficient.
These are persisting
gaps that represent
future challenges for the
women’s constituencies
in WA and demonstrate
how we must continue
to broaden the agenda
for women and girls at
future conferences.
The activities
developed by WA at
the conference, starting
prior to the opening
on the first day, gave a
high level of visibility to women for the rest of the week. On
July 18, a large group of women, using WA t-shirts and posters,
held a demonstration during the Opening Ceremony where they
demanded: ‘Women’s Rights, Action Now!’. WA also had an
important presence in this ceremony, as well as in the plenary
sessions and the closing session, through the participation of
coalition members as speakers who excellently expressed the
perspective of women and women’s rights issues at the centre of
WA’s position. They included Rachel Arinii (ARROW) as young
women’s representative and Paula Akugizibwe (ARASA) in the
Opening Ceremony, Everjoice Win (Action AID International),
and Meena Seshu (SANGRAM) as plenary speakers, and
Patricia Perez (ICW Global) as speaker in the closing ceremony.
The special session organised by Women ARISE on the
opening morning of the conference: ‘Women’s and Girls’ Issues
at the Vienna Conference’, was a mechanism to strengthen the
agenda and alliances, and strategise before all the conference
activities began. The invited speakers each had a special
significance for the women and HIV agenda: Dr. Nafis Sadik,
the former leader who, as Executive Director of UNFPA made
the International Conference of Population and Development,
known as the Cairo Conference, possible, which, for the first
time, recognised sexual and reproductive rights, paying special
attention to HIV, particularly for women; Purnima Mane, as
an expert and a woman committed to sexual and reproductive
health and HIV, and now as Deputy Executive Director of
UNFPA, is one of us opening opportunities for women and
girls. Christoph Benn represented the Global Fund to Fight
AIDS, Tuberculosis and Malaria and, as an organisation with a
Gender Equality Strategy and Sexual Orientations and Gender
Identities (SOGI) Strategy to integrate gender equality in the
HIV and AIDS response, had the opportunity to come to know
WA and our interests and ideals; Dr. Michel Sidibé, because his
leadership made possible the Operational Plan for the UNAIDS
Action Framework on Women, Girls, Gender Equality and HIV,
and because we need the continued commitment of UNAIDS
for its urgent implementation so that women and girls are put
at the centre of the HIV response. The participation of these
leaders in the session, as well as that of many WA members was
important for giving urgency to the incorporation of women’s
and girls’ issues into the HIV response, and also showed the
political importance of WA being able to build alliances as a
strategy to achieve our goals.
Women ARISE organised and participated in a wide diversity
of sessions during the conference, including a session ‘The
invisibilisation of lesbians and WSW in the HIV/AIDS epidemic’
in the Human Rights Networking Zone, as well as several
…the incorporation of
women speakers with a
gender perspective in all
areas of the conference
programme and the
achievement of a gender
balance of speakers in
almost all the sessions…
Mujeres Adelante 73
ALQ October 2010 – Special edition incorporating MujereS adelante
sessions addressing the issue of abortion in the framework of
reproductive rights, especially from the perspective of women
living with HIV. In all these sessions, diverse women from all
regions of the world made their voices heard.
WA also had a booth in the Commercial Exhibition Area
of the Conference that was used as a showcase by the different
women’s groups in the coalition to make their messages and
demands visible through posters and activities that went along
with the daily themes of women living with HIV, sex workers,
women ‘victims’ of violence, lesbians, young women, women
who use drugs, and women activists on sexual and reproductive
health and rights. In the booth, the Daily Vulva Award was used
as a way of calling people’s attention to women’s interests and
issues, as well as our
demands and needs, and
also for decoration to
make women’s bodies
visible. This was very
controversial, because
of its relation to sexual
pleasure, which is still
largely questioned
for women around
the world.
Although Vienna
2010 marked many
achievements for the
inclusion of women and
women’s issues in the
conference, persisting gaps were identified, especially in regard
to some neglected issues, such as the incorporation of lesbians
and WSW in the response to the epidemic, as well as abortion,
ARV dosages and their effects on women.
These issues, and also how to strengthen women’s presence
in all their diversity, are challenges that Women ARISE and
its constituencies must work together to overcome by pushing
for a broader agenda for women and girls at Washington 2012.
We are committed to continue working until Washington 2012
and beyond.
Strengthening the women’s agenda at AIDS 2010
…persisting gaps were
identified, especially in
regard to some neglected
issues, such as the
incorporation of lesbians
and WSW in the response
to the epidemic, as well as
abortion, ARV dosages and
their effects on women…
Mabel Bianco is with Women ARISE.
For more information and/or comments, please contact
her at womenarise@aidswomencaucus.org.
74 Mujeres Adelante
Special edition incorporating MujereS adelante – October 2010 ALQ
Supported by the Oxfam HIV and AIDS Programme
(South Africa)
www.aln.org.za www.ATHENAnetwork.org
Editors: Johanna Kehler (jkaln@mweb.co.za), E. Tyler Crone (tyler.crone@gmail.com) • DTP Design: Melissa Smith (melissas1@telkomsa.net) • Printing: FA Print
Tel: +27 21 447 8435 • Fax: +27 21 447 9946 • E-mail: alncpt@aln.org.za • Website: www.aln.org.za
Messages from Vienna…