Project Description

This Double Edition of the ALQ is focusing on HIV criminalisation – exploring various aspects of legislative trends towards the criminalisation of HIV exposure mad transmission, as well as the extent to which prevailing ‘criminalisation’ realities, as experienced especially by positive women, lesbian women and sex workers, impact on HIV risks and vulnerabilities, the numerous articles in this edition examine the legislative trends towards criminalising HIV exposure and/or transmission as to their inefficiency and inability to halt the spread of HIV; explore various human rights and gender implications, particularly as to the extent to which HIV-specific laws will affect women, and especially positive women, will deter people from accessing HIV prevention, testing, treatment, care and support services, will increase, instead of decrease, existing HIV risks and vulnerabilities for already ‘vulnerable and marginalised groups’, and will further HIV-related stigma, discrimination and the ‘criminalisation’ of people living with HIV. Moreover, this edition questions the ‘ability’ of the law to influence and transform behaviour, especially sexual behaviour, to halt new HIV infections, and to ‘protect’ women from ‘wilful’ HIV infections.

A Publication of the AIDS Legal Network • September/November 2008
In this issue • 1 One size punishes all… • 2 Editorial • 11 A tragedy, not a crime… • 14 Into the firing line… • 20 Criminalisation of
sex work… • 23 Perceived as potential criminals… • 25 Still forced to live on the margins of society… • 27 Regional View • 30 Invisibility
of gender violence augmented… • 34 Increasing the risk of human rights abuses… • 38 Participation is seen as a privilege, not a right…
• 44 The NSP remains a document for a few… • 55 Comment/Making a point: The decision signals a new beginning…
• 58 Comment/Making a point: Gains continue to be hard-won… • 72 We need supportive legislation, not criminalisation…
One size punishes all…
A critical appraisal of the criminalisation of HIV transmission
Lauded by lawmakers as an expression of their strong will to ‘fight AIDS’, HIV-specific laws
have become a ubiquitous feature of the legal response to HIV in sub-Saharan Africa1
Q
A I D S L E G A L N e t wo r k
Patrick Eba
As of 1st December 2008, twenty countries in
sub-Saharan Africa had adopted HIV-specific laws.2
HIV-specific laws or ‘omnibus HIV laws’, as they are
sometimes ironically referred to, are legislative provisions
that regulate, in a single document, several aspects of HIV
and AIDS, including HIV-related education and
communication; HIV testing, prevention treatment, care
and support; HIV-related research; and the protection of
people living with HIV. The emergence of HIV-specific
laws in sub-Saharan Africa can be traced to the adoption
of the Model Law on STI/HIV/AIDS for West and Central
Africa in September 2004. Generally known as the
N’Djamena Model Law, this document was adopted by the
Forum of African and Arab Parliamentarians for Population
and Development (FAAPPD) at a workshop organised on
8-11 September 2004 in N’Djamena (Chad) by Action
for the West African Region on HIV/AIDS (AWAREHIV/
AIDS), in collaboration with the FAAPPD, the
ECOWAS Parliament, the West African Health Organisation
(WAHO), the Center for Studies and Research on
Population for Development (CERPOD), the Network of
Parliamentarians in Chad for Population and Development
and the USAID West African Regional Programme.3
The stated objective of these HIV-specific laws, as
provided under several of their preambulary provisions,
is to
…ensure that every person living with HIV or
presumed to be living with HIV enjoys the full
protection of his or her human rights and freedoms.4
In spite of these proclamations of intent by their drafters,
the content of HIV-specific laws suggests a different and
grimmer reality. Several HIV-specific laws adopted in
sub-Saharan Africa restrict access to information and
education for children;5 provide for mandatory pre-marital
HIV testing and for compulsory HIV testing for commercial
sex workers;6 introduce compulsory disclosure of HIV status;7
Editorial…
Decriminalisation, not more criminalisation is
what is needed. [Kirby, 2007]
It is within the context of this quote that this
Double Edition of the ALQ is focussing on HIV
criminalisation – exploring various aspects of legislative
trends towards the criminalisation of HIV exposure and
transmission; as well as the extent to which prevailing
‘criminalisation’ realities, as experienced especially
by positive women, lesbian women and sex workers,
impact on HIV risks and vulnerabilities. The numerous
articles in this edition examine the legislative
trends towards criminalising HIV exposure and/or
transmission as to their inefficiency and inability to
halt the spread of HIV; explore various human rights
and gender implications, particularly as to the extent to
which HIV-specific laws will affect women, and
especially positive women, will deter people from
accessing HIV prevention, testing, treatment, care and
support services, will increase, instead of decrease,
existing HIV risks and vulnerabilities for already
‘vulnerable and marginalised groups’, and will
further HIV-related stigma, discrimination and the
‘criminalisation’ of people living with HIV. Moreover,
this edition questions the ‘ability’ of the law to
influence and transform behaviour, especially sexual
behaviour; to halt new HIV infections, and to ‘protect’
women from ‘wilful’ HIV infections.
This edition also introduces the Namibian
experience of coerced or forced sterilisation of
young positive women; is ‘making a comment’ on the
meaningful involvement of women living with HIV at
the 2008 Mexico conference; as well as a ‘comment’
on the changes signalled for global responses and
funding for HIV and AIDS through Obama’s victory
at the US election; and includes an introduction of the
WC End Hate Campaign – a civil society response
to numerous incidences of violent homophobic hate
crimes against especially black lesbian women; and the
‘provincial feedback’ on the implementation of the NSP.
And finally, this edition introduces 10 reasons to oppose
the criminalisation of HIV exposure or transmission.
In this edition, Patrick Eba provides an overview
of the legislative trends towards the criminalisation of
HIV transmission in sub-Saharan Africa. Analysing
various provisions and their impact of HIV-specific laws
in the region, he highlights the inefficiency of these laws
by specifically focusing on the concepts of ‘prohibited
activities’, ‘knowledge of infection’, condom use, and
‘disclosure and consent’ as utilised in HIV-specific
laws, and argues that the very language and content of
these laws are ‘problematic’, since structural responses
to the spread of HIV, such as HIV-specific laws, are
only raising more questions and concerns, than they
are in the position to provide answers and thus, reduce
the spread of HIV.
Based on the premise that ‘criminalisation’ may have
good intentions, but is bad policy, Michaela Clayton,
Edwin Cameron and Scott Burris examine some of
the negative impacts of laws criminalising HIV
exposure and transmission on especially ‘those
vulnerable to becoming infected’. Exploring the various
implications of criminalisation, the article argues
that since HIV is a tragedy and not a crime, laws
criminalising HIV transmission is not the answer to
halt new HIV infections – as the answer would lie in
the review of the law so as to remove legal barriers to
HIV prevention, treatment and care services.
Highlighting the extent to which legislative trends
towards criminalisation of HIV transmission affect
women and girls, Alice Welbourn analyses some of
the realities, closely linked to the application of laws
criminalising HIV transmission, including the fact
that laws are not gender specific. Examining various
realities as to the extent to which they impact on
women’s and girls’ HIV risk, she argues that laws
criminalising HIV transmission, irrespective of
whether or not they may have had ‘good intentions’,
are in reality nothing more than practices that judge,
penalise and ostracise HIV positive women.
Recognising the impact of existing criminalisation
of sex work on, amongst others, sex workers heightened
HIV risks and vulnerabilities, Marlise Richter stresses
the need for decriminalisation of sex work, and
advocates for the immediate implementation of one
of the NSP recommendations calling for the
decriminalisation of sex work. In her analysis, she
argues that maintaining the ‘status quo’ of criminalising
sex work will not only continue the human rights
abuses and violations sex workers are subjected to,
but also ensure that available HIV prevention, testing,
treatment, care and support services remain largely
inaccessible to sex workers.
Looking specifically at the impact of criminalising
HIV transmission within a patriarchal society,
Raphaela Madlala discusses the extent to which laws
criminalising HIV exposure and transmission will
2 Editorial
ALQ September/November 2008
and nineteen out of twenty criminalise HIV transmission
or exposure8.9
The criminalisation of HIV transmission or exposure
is generally invoked to epitomise the embrace of coercive
measures in HIV-specific laws in sub-Saharan Africa.10
Consequently, there is a growing number of advocacy
initiatives and scholarly writings challenging the explosion
of HIV-specific laws that criminalise HIV transmission
and exposure in this region.11 However, most of these
efforts have, thus far, focused on highlighting the
inefficiency of these laws in affecting behaviour change and
their negative impact on people living with HIV, or public
health interventions, without linking these arguments to
a systematic and coherent analysis of the content of HIVspecific
laws. This article argues that a strong case against
the criminalisation of HIV transmission or exposure,
through HIV-specific laws, lies in the very language
and content of these laws.12
Navigating through the nebulous content of HIV-specific
laws that criminalise HIV transmission or exposure, this
article identifies several elements (as illustrated in Table
1) that disqualify them as ill-informed and potentially
harmful to the response to HIV. Firstly, the activities
prohibited under HIV-specific laws are overbroad and
fail to distinguish between high and low risk activities,
hence spreading misconceptions about HIV. Secondly,
HIV-specific laws fail to integrate the use of condoms in
the definition of the crime of HIV transmission or exposure,
thus, undermining one of the most effective HIV prevention
strategies. Thirdly, by requiring the knowledge of HIV
infection, HIV-specific laws may discourage HIV testing.
Finally, by failing to integrate disclosure and consent,
HIV-specific laws disregard an important public health
message and ignore the sexual and reproductive health
rights of people living with HIV and their partners.
Prohibited activities
Proponents of the use of HIV-specific laws to
criminalise HIV transmission or exposure argue that they
provide clarity and ensure the protection of the right of the
accused by defining in advance what acts are prohibited.13
However, the analysis of HIV-specific laws adopted in sub-
Saharan Africa provides very little evidence to support this
affirmation. As illustrated in Table 1, all the HIV-specific
laws reviewed include overbroad provisions related to the
criminalisation of HIV transmission.14 These provisions are
considered overbroad, because they fail to identify what
specific acts are targeted for criminal punishment. A typical
example of overbroad provision is that of Mauritania, which
defines HIV transmission as
…any attempt to a person’s life by the inoculation of
substances infected with HIV, regardless of how these
substances were used or employed and independently
of the consequences thereof.15
This provision is extremely vague and may be used to
target a wide range of activities. The provision prohibits
any ‘inoculation of substances infected with HIV’ regardless
of whether or not the substance can lead to HIV infection.
Arguably, this provision can be used to criminalise a person
living with HIV who engages in a deep kiss or French kiss
with another person as this may involve the transfer of
saliva. Although the presence of HIV has been reported in
saliva, deep kissing is considered an ineffective route of
HIV transmission in the absence of open sores in the mouth,
because of the very low concentration of HIV in saliva.16
…these provisions are considered
overbroad, because they fail to identify
what specific acts are targeted for
criminal punishment…
Due to the overbroad wording, all but one of the
HIV-specific laws (Togo) could be used to punish
mother-to-child transmission (Table 1). Several
HIV-specific laws stipulate that the crime of transmission
of HIV is considered to have been committed regardless
of ‘how the [substances infected with HIV] were used or
3
A critical appraisal of the criminalisation of HIV transmission
September/November 2008 ALQ
increase women’s risks and vulnerabilities – both to
HIV infection and to be ‘prosecuted’ for transmitting
HIV. She explores the potential impact of these
legislative trends on HIV testing, as well as HIVrelated
stigma and discrimination, and argues that with
the introduction of these laws not knowing one’s HIV
status seems to be the ‘safer’ option, as these laws will
endorse the perception that people living with HIV are
potential ‘criminals’ with the ‘desire, potential and
intent to harm others’.
Jennifer Gatsi introduces the Namibian reality
of coerced or forced sterilisation of young positive
women. Exploring the gross human rights abuses
inherent to these practices, she shares experiences of
advocacy responses demanding an immediate halt to
coerced or forced sterilisation and justice for women
who have been violated, and argues that, in order to
stop this clear expression of denying positive women
the right to reproduce, healthcare providers performing
sterilisation without the consent of women, as well as
government officials failing to adequately intervene,
have to be held fully accountable.
Raising concerns as to the impact of criminalising
HIV transmission on the occurrence of gender-based
violence, Jameyah Armien examines the links between
trends towards criminalisation and the reality of
gender-based violence. Examining various factors
influencing the extent to which gender violence is
not only often ‘justified’, but also reinforced by the
normative and gendered societal context in which it
occurs, she argues that laws criminalising HIV exposure
and/or transmission will further augment the invisibility
of gender violence, while at the same time ‘enforce’ in
the name of the ‘law’ violence directed at people living
with HIV.
Exploring some of the human rights implications
intrinsically linked to the introduction of HIV-specific
legislation, Johanna Kehler examines the likely effect
of criminalising HIV exposure and/or transmission
on the accessibility of available prevention, testing,
treatment, support and care services, as well as on
human rights gains made in the response to HIV and
AIDS. She argues that human rights will be further
compromised as the increased risk of human rights
abuses seems to be as much inherent to HIV-specific
legislation, as the heightened risk to HIV infection,
to abuse, and to ‘HIV-related prosecution’ for already
‘vulnerable and marginalised groups’.
Recognising women’s full participation and active
leadership in the response to HIV and AIDS as the key
to ensuring a gendered response to women’s realities
and needs in the context of HIV and AIDS, Tyler Crone
raises the question as to the adequacy of women’s
participation and leadership. Analysing data as to who
is informing, and actively participating in, the design
and implementation of HIV and AIDS responses at a
national, regional and global level, she argues that as
long as the participation and leadership of women are
largely seen as a privilege, instead of a right, women’s
voices will continue to be silenced, as policies and
programmes remain largely non-inclusive.
Gahsiena van der Schaff examines provincial
experiences and challenges relating to the knowledge
and implementation of the NSP. Exploring information
and data received during various meetings at a
provincial level, and discussing some of the recurrent
challenges and obstacles raised, she argues that
because the NSP remains largely unknown and since
there are no effective partnerships in place, which
are inclusive of civil society, to further the
implementation of the NSP, the NSP remains to be
but a document for a few, with little or no benefit to the
people it is meant to benefit.
Discussing America’s HIV and AIDS policy, as well
as the extent to which HIV and AIDS featured during
the 2008 election campaign, and the potential for
change after the 2008 US election, Nathaniel Meyer
is ‘making a point’ about the fact that Obama’s victory
signals a new beginning, which also carries the potential
of change in the global HIV and AIDS response and
funding.
Analysing the meaningful involvement of
women living with HIV (MIWA) at the 2008 Mexico
conference based on collected data during the
conference, Luisa Orza provides a critical assessment
of the gains and continuing challenges of positive
women’s involvement at international decision-making
structures, including international AIDS conferences.
Exploring the positive impact of positive women’s
involvement in the processes leading up to, and during,
the international AIDS conference, as well as the
barriers to greater and more meaningful involvement of
positive women, she is ‘making a point’ that, despite
progress made, gains continue to be hard-won, even
though, ‘they ought to, by now, be a given’.
While the approach and focus may differ in
analysing the various trends, realities and implications
of HIV criminalisation, there seems to be common
concerns raised in all the contributions ranging from
a potential increase in stigma and discrimination to
4 Editorial
ALQ September/November 2008
administered’. Under these laws, a mother living with HIV
who transmits HIV to her child during pregnancy, delivery
or breastfeeding can be prosecuted for HIV transmission.
Arguably, any woman living with HIV who becomes
pregnant can be prosecuted for exposing her child to HIV
as these laws do not require actual transmission of HIV.
Similarly, the HIV laws of Tanzania, Burundi and Kenya
that broadly criminalise the exposure or transmission
of HIV, without defining the modes of transmission or
exposure, may also be used to criminalise mother-to-child
transmission.17
Unlike the other HIV-specific laws that may be
interpreted to include mother-to-child transmission,
that of Sierra Leone expressly criminalises mother-tochild
transmission.18 This provision is clearly intended at
deterring women living with HIV from bearing children. It
constitutes a violation of the sexual and reproductive health
rights of women living with HIV, and may contribute to the
stigmatisation of women as ‘vectors of diseases’. 19
…constitutes a violation of the sexual
and reproductive health rights of
women living with HIV, and may
contribute to the stigmatisation of
women as ’vectors of diseases’…
Another feature of the criminalisation of HIV
transmission or exposure through HIV-specific laws in sub-
Saharan Africa is that several of them specifically target
healthcare workers (Table 1). For instance, the HIV laws
of Mauritania, Mali and Guinea Bissau punish medical
practitioners who may be accomplices of HIV transmission
or exposure.20 The HIV law of Madagascar doubles the
penalty for HIV transmission if the crime is committed
by a healthcare provider.21 These provisions seem to be a
reaction to incidents similar to that of healthcare workers
in Libya, who had allegedly infected children with HIV in
a hospital setting.22 It should be noted from the outset that
the Libyan prosecutions were largely regarded as an
attempt to deflect blame from the government’s role in
the infection of the children by failing to put adequate
measures (such as blood safety) in place.23 Targeting
healthcare workers for criminalisation is based on a
sensationalised view of the AIDS pandemic. It creates
the wrong impression that HIV is spread through that
route, and that it will somehow be curbed through these
measures.24 These provisions further stigmatise HIV
and are merely deflecting the attention from the real
causes of HIV infection.
The analysis of the prohibited activities under
HIV-specific laws also unveils a peculiar characteristic
of these laws that we describe as ‘over-criminalisation’
(Table 1). ‘Over-criminalisation’ refers to the fact that
several provisions, in the same HIV-specific law, can
be used to prosecute HIV transmission or exposure. A
typical example of ‘over-criminalisation’ can be found
in the HIV law of Burkina Faso. This HIV law contains
three separate provisions with different constitutive
elements that may be applied to the criminalisation of
HIV transmission or exposure namely, Article 20, which
is expressly related to the sexual transmission of HIV;
Article 22, which deals with the transfer of substances
infected with HIV, and could also be used to criminalise
the sexual transmission of HIV; and finally Article 26,
which criminalises any person living with HIV, who
does not take the necessary precautions to protect
his or her partners, which again could be invoked
to prosecute the sexual transmission of HIV.25 This
‘over-criminalisation’ is source of confusion on the
nature of the prohibited acts, as vague and overbroad
provisions often coexist in the same HIV laws with
narrowly worded ones that specify the prohibited acts.
The merits of the latter are invalidated by the former,
because vague provisions can be invoked to prosecute
a person who engaged in acts that are not specifically
prohibited.
Although referred to as HIV transmission or
5
A critical appraisal of the criminalisation of HIV transmission
September/November 2008 ALQ
6 A
critical appraisal of the criminalisation of HIV transmission
ALQ September/November 2008
further deterring people from accessing HIV prevention,
testing, treatment, care and support services, as well
as the disproportionate negative impact HIV-specific
laws will have on women, including increased risks and
vulnerabilities to gender-based violence and to HIV
infection. There also seems to be the common argument
that criminalising HIV exposure or transmission is
not only ‘bad policy’, but will also, in its application,
reverse many of the human rights gains made in
the global response to HIV and AIDS – thus, the
criminalisation of HIV exposure or transmission is in
its very design a human rights violation.
Similarly, exploring the various realities and
challenges of ‘HIV criminalisation’ as experienced
especially by ‘vulnerable and marginalised groups’,
such as by positive women, lesbian women and
sex workers, clearly highlights that specific laws
criminalising HIV exposure and transmission will
further enhance, rather than decrease, existing risks
and vulnerabilities – and thus, further jeopardise the
extent to which especially ‘vulnerable and
marginalised’ groups are in the position to access
and benefit from existing services and programmes.
Most notably, prevailing rights abuses and violations
based on a person’s sex, gender, sexual orientation
and/or HIV status will not only increase, but also be
‘sanctioned’ by the law.
Notwithstanding the need to ‘punish’ a person who
‘intentionally’ exposes another person to HIV with
the ‘intent’ to infect the other person with HIV, it has
to be recognised that existing legislation is more than
adequate to prosecute cases of ‘intentional’ HIV
infection – raising the question as to why ‘new’
legislation needs to be introduced to prosecute
‘intentional’ HIV infection. Whatever the reasons may
be – reducing HIV transmission or ‘protecting’ the
most vulnerable from the risk of ‘wilful’ HIV infection
– introducing HIV-specific legislation will not and
cannot, by its very design, achieve either of these.
Amongst the many concerns is the fact that the
‘punitive approach’ fails to take into account not
only the societal context defining existing HIV risks
and vulnerabilities, as well as prevailing realities of
HIV-related stigma, discrimination and violation of
rights, but more importantly the underlying factors
fuelling the HIV and AIDS pandemics, such as
gendered power relations maintained and strengthened
by ‘social values’, placing especially women at greater
risk of HIV infection. Acknowledging women’s
greater risks and vulnerabilities, including women’s
lesser ‘power’ to make informed sexual decisions, as
well as the reality that women are ‘first to know’ of
their HIV status, also demands recognising the potential
‘impact’ of ‘new’ legislation in that women are more
likely to be ‘prosecuted’ by the very same law, which
may indeed be meant to ‘protect’ women.
If we are to agree that human rights are to be at the
centre of the response to HIV and AIDS, then we need
to equally agree that criminalising HIV exposure and/
or transmission is indeed ‘bad policy’ – as this will
further compromise human rights, instead of promoting
the protection of human rights, in the response to
HIV and AIDS. Moreover, if we are to agree that
‘behavioural change’ is key to reducing the spread
of HIV, than we need to agree that the ‘punitive’
approach is most concerning – as this might create the
perception that ‘behavioural change’, and more
importantly ‘sexual behaviour change’, can
be legislated. At the same time, it is equally
impossible to challenge or transform, through
legislative reform, deep-seated value and
belief systems, ‘condoning’ and ‘justifying’ prevailing
‘HIV-criminalisation’.
As long as we fail to design HIV and AIDS
responses, which are indeed addressing the underlying
factors of the pandemics, we will not only continue
to ‘by-pass’ the needs and realities of ‘vulnerable
and marginalised groups’, especially women, but
also heighten the risks and vulnerabilities of ‘those’,
who are meant to benefit. Similarly, as long as we
look for legislation to impact on the spread of HIV,
we will continue to fail in addressing the ‘real’ issues
furthering the spread of HIV. Thus, only as and when
human rights are indeed at the centre of the response
to HIV and AIDS, will we be in the position to design
and implement ‘responses’ that are both based on, and
responsive to, HIV risks and vulnerabilities – and hence,
‘beneficial’ to the ones most at risk of HIV infection.
If we, however, ‘allow’ legislative trends towards
criminalising HIV exposure and/or transmission to
continue, then we not only ‘allow’ prevailing ‘HIV
criminalisation’ to continue, but we also, to an extent,
‘legalise’ the criminalisation of HIV – and thus, the
‘criminalisation’ of people living with HIV…
Johanna Kehler
exposure laws, many of these laws do not require
‘exposure’ or ‘transmission’ of HIV (Table 1). For
instance, the HIV laws of Kenya (Article 24(1)(b)) and
Sierra Leone (Article 21(b)) compel any person who
is HIV positive, and is aware of that fact, to ‘inform,
in advance, any sexual contact or person with whom
needles are shared of that fact.’ The obligation to inform
on the person living with HIV exists, regardless of
whether or not he or she ‘exposes’ or ‘transmits’ HIV to
another person. These provisions fail to understand that
‘a sexual contact’ or ‘a person with whom needles are
shared’ is not by these facts alone at risk of contracting
HIV from a person living with HIV. Indeed, a person
living with HIV can engage in activities with a ‘sexual
contact’, or a ‘person with whom needles are shared’,
that do not expose them to HIV, or that are unlikely
to lead to the transmission of HIV, such as talking to
each other, sharing a cup of tea, having protected sex,
or sharing sterilised needles. By opening the possibility
of criminal prosecution in the absence of exposure
or transmission of HIV, these provisions are likely to
send confusing messages to the general public about
the modes of HIV transmission and may undermine
the efforts of public health campaigns that promote the
acceptance of people living with HIV.
…instead, testing for HIV becomes a
self-incriminating step that may provide
the state with a key element
for prosecution…
Knowledge of infection
Knowledge of infection means that only those who
know their HIV status can be subjected to criminal liability
for HIV transmission or exposure. Of the eighteen countries
surveyed, thirteen, either expressly or implicitly, require
knowledge of HIV infection as an element of the crime
(Table 1).
The requirement of knowledge of infection as an
element of the crime of HIV transmission or exposure
7
A critical appraisal of the criminalisation of HIV transmission
September/November 2008 ALQ
Country Exposure Transmission Overbroad Overcriminalisation
Targets
medical
practitioners
Applicable
to MTCT Disclosure Informed
consent Condom
Knowledge
of HIV
infection
Angola X X X X X(a)
Benin X X X X X X X
Burkina Faso X X X X X X(a) X(a) X
Burundi X X X X
Cape Verde X X X
Central African Republic X X X X X X(a) X(a)
Chad X X X X X X X(a) X(a)
Democratic Republic of Congo X X X X
Guinea X X X X X X X(a)
Guinea Bissau X X X X X
Kenya X X X X X X
Madagascar X X X X
Mali X X X X X
Mauritania X X X X X X X(a) X(a) X(a)
Niger X X X X X X(a)
Sierra Leone X X X X X X
Tanzania X X X X X
Togo X X X X
Table 1: Assessment of HIV-specific laws criminalising HIV transmission or exposure in sub-Saharan Africa37
X(a) means ‘yes/no’ and is related to cases in which an HIV-specific law contains several provisions related to the criminalisation of HIV transmission, some of which
require a particular element of the crime and others not.
illustrates how dangerous HIV-specific laws can be.
Requiring knowledge of infection means that HIV testing,
which is commonly used to determine a person’s HIV
status, is no longer the life-saving step, or ‘entry door’
towards access to prevention, treatment, care and support
services advocated by public health messages.26 Instead,
testing for HIV becomes a self-incriminating step that
may provide the state with a key element for prosecution
under HIV transmission or exposure laws. It may, therefore,
appear wiser for the general public to avoid knowing their
HIV status as a way to escape potential prosecution: ‘the
less you know the safer you are’.
Another concern related to the provisions requiring knowledge
of HIV infection is that they fail to define what knowledge
actually means. Does knowledge only refer to an HIV test? Does
knowledge include a clinical diagnosis of AIDS by a physician
specialising in infectious diseases? Or does knowledge also refer
to ‘constructive knowledge’? 27 By failing to define the notion
of knowledge, many HIV-specific laws provide room for the
application of the notion ‘constructive knowledge’, which is likely
to lead to unfair prosecutions and may discourage any knowledge
related to HIV.
Use of condom
Condom use is a central element of HIV prevention
efforts among sexually active individuals.28 For people
living with HIV, the consistent and correct use of latex
condoms is recommended to protect themselves (against
the risk of re-infection) and others (against the risk of
transmission of HIV).29 In spite of these public health
messages emphasising the importance of condom use
among people living with HIV, only the HIV-specific laws
of Togo and Benin shield people living with HIV, who use a
condom during sexual intercourse, from prosecution.
Chad, the Central African Republic, Mauritania,
Guinea and Burkina Faso have provisions that prevent
the prosecution of people living with HIV who ‘engage
in protected sex’ (which includes the use of condoms).
However, these provisions are made irrelevant by the fact
that these laws also contain provisions that may be used to
prosecute people living with HIV, even in the event of use of
condoms. The other countries surveyed do not incorporate
the use of condoms in the definition of the crime of
HIV transmission or exposure (Table 1). The fact that
sixteen of the eighteen countries surveyed provide for the
criminalisation of people living with HIV, even when they
engage in protected sex, is a major concern, as it clearly
contravenes the prevention efforts based on condom use and
introduces a disincentive for protected sex, because it does
not protect against the possibility of criminal prosecution.30
…it clearly contravenes the prevention
efforts based on condom use and
introduces a disincentive for
protected sex…
Disclosure and consent
Of all the HIV-specific laws surveyed, only those of
Kenya and Sierra Leone exclude criminal liability when
the person living with HIV discloses his or her HIV status,
and obtains informed consent from his or her partner to
the sexual act.31 The HIV law of Benin excludes criminal
liability when the person living with HIV discloses his or
her HIV status, without referring to the consent of that
person to the sexual act.32 This means that in the fifteen
other countries under review, disclosure and informed
consent do not shield the person living with HIV from
criminal prosecution (Table 1). This situation is paradoxical,
as all these HIV statutes either encourage disclosure of HIV
status or make it compulsory.33
The failure to protect those who disclose their HIV
status and obtain the informed consent of their partners
to sexual acts further illustrate the conflict between HIVspecific
laws and public health messages. Indeed, in spite of
its many challenges,34 the disclosure of HIV status to sexual
partners is encouraged as a measure of HIV prevention, and
8 A
critical appraisal of the criminalisation of HIV transmission
ALQ September/November 2008
as an element that may foster support for the person living
with HIV and help reduce stigma.35 Furthermore, disclosure
and informed consent to sexual acts are an important
element of sexual and reproductive health rights of people
living with HIV who may agree with their partners to have
unprotected sex for several reasons, including procreation.
The prosecution of people living with HIV, who informed
their partners and obtained their consent, will clearly
be unfair and is likely to have a detrimental effect on
disclosure.
…the recourse to the criminal law as a
structural response to the spread of HIV,
like Pandora’s Box, raises more questions
and concerns than answers…
Conclusion
Conceived with the blinded ire of legislators, frustrated
by the complexity of the AIDS pandemic and desperate
to show results, HIV-specific laws criminalising HIV
transmission or exposure contribute to reinforcing stigma;
spread myths and misconceptions about HIV and its modes
of transmission; and undermine effective public health
efforts based on the use of condoms and encouraging
disclosure.
Our analysis proves, yet again, that the recourse to the
criminal law as a structural response to the spread of HIV,
like Pandora’s Box, raises more questions and concerns
than answers. It reminds us that we should not allow
frustration, fear and prejudice cloud our mind and drive
us away from the responses that have proved successful
in addressing HIV, including HIV-related information and
education targeted at behavioural change for risk reduction,
addressing the underlying causes of vulnerability to HIV,
and increasing access to HIV-related prevention, treatment,
care and support services.36
FOOTNOTES:
1. The expression ‘sub-Saharan Africa’ in this article is a shorthand to refer to all
the African countries in the exclusion of those situated in Northern Africa. The
expression also covers the African countries located in the Indian Ocean.
2. These countries are Angola (Lei No 8/04 sobre o Virus da
Immunodeficiência Humana (VIH) e a Sindroma de Immunodeficiência
Adquirida (SIDA)), Benin (Loi No 2005-31 du 10 Avril 2006 portant
prévention, prise en charge et contrôle du VIH/SIDA), Burkina Faso
(Loi No 030-2008 du 26 Juin 2008 portant lutte contre le VIH/SIDA et
protection des droits des personnes vivant avec le VIH/SIDA), Burundi
(Loi No 1/018 du 12 Mai 2005 portant protection juridique des personnes
infectées par le Virus de l’Immunodéficience Humaine et des personnes
atteintes du Syndrome Immunodéficience Acquise), Cape Verde (Lei
No 19/VII/2007), The Central African Republic (Loi de 2006 fixant les
droits et obligations des personnes vivant avec le VIH/SIDA), Chad (Loi
No 19/PR/2007 du 15 Novembre 2007 portant lutte contre VIH/SIDA/
IST et protection des droits des personnes vivant avec le VIH/SIDA),
The Democratic Republic of Congo (Loi de 2008 déterminant les
principes fondamentaux relatifs à la protection des droits des personnes
vivant avec le VIH/SIDA et des personnes affectées), Guinea (Loi No
25/2005 relative à la prevention, à la prise en charge et le contrôle du
VIH/SIDA), Guinea Bissau (Lei No 5/2007 de prevençao, tratamento
e controle do VIH/SIDA), Guinea Equatorial (Ley No 3/2005 sobre la
prevención y la lucha contra las infecciones de transmisión sexual (ITS),
el VIH/SIDA y la defensa de los derechos de las personas afectadas),
Kenya (HIV Prevention and Control Act, No 14 of 2006), Madagascar
(Loi No 2005-040 du 20 Février 2006 sur la lutte contre le VIH/SIDA et
la protection des droits des personnes vivant avec le VIH/SIDA), Mali
(Loi No 6-028 du 29 Juin 2006 fixant les règles relatives à la prevention,
à la prise en charge et au contrôle du VIH/SIDA), Mauritania (Loi
No 2007-042 relative à la prevention la prise en charge et le contrôle
du VIH/SIDA), Mauritius (HIV and AIDS Act, No 31 of 2006), Niger
(Loi No 2007-08 du 30 Avril 2007 relative à la prevention, la prise en
charge et le contrôle du Virus de d’Immunodéficience Humaine (HIV),
Sierra Leone (The Prevention and Control of HIV and AIDS Act, No 8
of 2007), Tanzania (HIV and AIDS (Prevention and Contol) Act, No 28
of 2008), and Togo (Loi No 2005-012 portant protection des personnes
en matière du VIH/SIDA).
3. For an overview of how the N’Djamena Model Law influenced national
legislation in several sub-Saharan African countries, see Pearshouse, R. 2007.
‘Legislation contagion: The spread of problematic new HIV laws in Western
Africa’. In: HIV/AIDS Policy and Law Review, Vol 12, N 2/3, pp1-12.
4. Preamble of Lei No 5/2007 de prevençao, tratamento e controle do VIH/SIDA
of Guinea Bissau [translation of the author]. Similar proclamations can be found,
among others, under article 3 of the HIV Prevention and Control Act of Kenya,
article 1 of Loi No 2005-040 du 20 Février 2006 sur la lutte contre le VIH/SIDA
et la protection des droits des personnes vivant avec le VIH/SIDA of Madagascar
and article 2 of Loi No 2005-012 portant protection des personnes en matière du
VIH/SIDA of Togo.
5. Article 2 of Loi No 25/2005 relative à la prevention, à la prise en charge et le
contrôle du VIH/SIDA of Guinea provides that: ‘It is strictly forbidden to provide
[HIV related education] to minors below the age of 13’ [translation of the author].
Similar restrictive provisions can also be found under Article 2 of Loi No 6-028
du 29 Juin 2006 fixant les règles relatives à la prevention, à la prise en charge et
au contrôle du VIH/SIDA of Mali.
6. Article 50 of Loi No 2005-012 portant protection des personnes en matière
du VIH/SIDA of Togo provides for regular compulsory testing for commercial
sex workers, and Article 28 of Loi No 25/2005 relative à la prevention, à la
prise en charge et le contrôle du VIH/SIDA of Guinea provides for compulsory
pre-marital HIV testing.
7. For instance, the HIV laws of Cape Verde (Article 22), Mali (Article 27) and
Niger (Article 15) provide that people living with HIV who know their status
must inform their partner(s) or spouse within six weeks from the day they become
aware of that HIV status.
8. Mauritius is the only sub-Saharan African country with an HIV-specific law
that does not provide for the criminalisation of HIV transmission or exposure.
9. For a general analysis of several of these HIV-specific laws, see Canadian
HIV/AIDS Legal Network. 2007. A human rights analysis of the N’Djamena
model legislation on AIDS and HIV-specific legislation in Benin, Guinea, Guinea-
Bissau, Mali, Niger, Sierra Leone and Togo.
10. While this approach is strategically useful to bring attention onto these
coercive HIV laws, the criminalisation of HIV transmission or exposure should
not overshadow the major concerns related to the other coercive provisions that
are found in these laws.
11. For examples of recent publications and initiatives against the
criminalisation of HIV transmission, see Burris, S. & Cameron, E. 2008.
‘The case against the criminalisation of HIV transmission’. In: Journal
9
A critical appraisal of the criminalisation of HIV transmission
September/November 2008 ALQ
of the American Medical Association, Vol 300 No 5, pp578-581; Open
Society Initiative, UNDP & ARASA. 2008. Ten Reasons to oppose the
criminalisation of HIV exposure of transmission; and Stackpool-Moore, L.
2008. Verdict on a virus: Public health, human rights and criminal law. A
further illustration of the increasing campaigns against the criminalisation
of HIV transmission was to be found in the important number of sessions,
presentations and satellite events dedicated to the issue at the XVth
International Conference on AIDS and STI in Africa organised in Dakar
(Senegal) on 3-7 December 2008. See XVth International Conference on
AIDS and STI in Africa, 2008, Programme Book.
12. While focusing, for the purpose of this article, on HIV-specific laws, this
author stresses that in many sub-Saharan African countries, provisions that
specifically criminalise HIV transmission or exposure can be found in a variety
of documents. In Lesotho, HIV exposure is criminalised as an unlawful sexual
act under the Sexual Offences Act No 29 of 2003, and may be punishable by
death. In Zimbabwe, the criminalisation of HIV transmission or exposure is
provided under Article 79 of the Criminal Law (Codification and Reform) Act
No 23 of 2004 http://www.chr.up.ac.za/undp/domestic/docs/legislation_20.pdf
http://www.chr.up.ac.za/undp/domestic/docs/Zimbabwe_07.pdf. In countries,
such as Mali (Article 15 of Loi n 02-044 du 22 Juin 2002 relative à la santé de la
reproduction), Benin (Article 19 of Loi No 2003-04 relative à la santé sexuelle
et de la reproduction), and Burkina Faso (Article 18 of Loi 49-2005 portant
santé de la reproduction), the laws on reproductive health also provide for the
criminalisation of HIV transmission or exposure.
13. Markus, M. 1998-1999. ‘A treatment for the disease: Criminal HIV
transmission/exposure laws’. In: Nova Law Review, 23, p867, and also
Tierney, TW. 1992. ‘Criminalizing the sexual transmission of HIV: An
international Analysis’. In: Hastings International & Comparative Law
Review, 15, pp511-512.
14. In the United States of America, constitutional challenges have been laid
against HIV-specific statutes on the ground that they are vague and overbroad.
See, for instance, State v. Mahan, 1998 WL 312752 (Mo. June 16, 1998), and
State v. Stark, 832 P.2d 109 (Wash. Ct. App. 1992). Although in all these cases
the challenges were rejected, they highlight the human rights concerns posed by
the vague and overly broad provisions of HIV-specific laws. For a discussion on
the issue, see Lisko, EA. ‘Constitutional challenges brought against State statutes
that criminalise HIV transmission’ Available at:
[http://www.law.uh.edu/healthlaw/perspectives/HIVAIDS/980717
Criminalization.html].
15. Article 1 of Loi No 2007-042 relative à la prevention la prise en charge
et le contrôle du VIH/SIDA of Mauritania [translation of the author]. Identical
provisions can be found, among others, in the HIV laws of Mali (Article 1),
Guinea Bissau (Conceitos Básicos), and Guinée (Article 1). These provisions are
directly copied from articles 1 and 36 of the N’Djamena Model Law.
16. Brett-Smith, H. & Friedland, G.H. ‘Transmission and treatment’. In Burris,
S. et al (ed). 1993. AIDS law today: A new guide for the public, pp17-18; and
also Howe, J.M. & Jensen, P.C. ‘An introduction to the medical aspects of HIV
disease’. In Webber, D.W. (ed). 1997. AIDS and the law 3rd Edition, p25.
17. See Article 47 of the HIV and AIDS (Prevention and Control) Act of
Tanzania, Article 42 of Loi No 1/018 du 12 Mai 2005 portant protection juridique
des personnes infectées par le Virus de l’Immunodéficience Humaine et des
personnes atteintes du Syndrome Immunodéficience Acquise of Burundi, and
Article 24(2) of the of the HIV Prevention and Control Act of Kenya.
18. Article 21(2) of the Prevention and Control of HIV and AIDS Act of Sierra
Leone provides that ‘any person who is and is aware of being infected with HIV
or is carrying and is aware of carrying HIV antibodies shall not knowingly or
recklessly place another person, and in the case of a pregnant woman, the foetus,
at risk of becoming infected with HIV, unless that other person knew that fact and
voluntarily accepted the risk of being infected with HIV.’
19. Increasing infringements to the sexual and reproductive health rights of
women living with HIV have been recorded in sub-Saharan Africa over the past
few years in the form of coercive laws and practices, such as the criminalisation of
mother-to-child transmission, forced sterilisation and enforced abortion. See, for
instance, Tjaronda, W. 2008. ‘Namibia: women robbed of motherhood’. Available
at [http://allafrica.com/stories/200802120307.html].
20. See respectively Article 23 of Loi No 2007-042 relative à la prevention la
prise en charge et le contrôle du VIH/SIDA of Mauritania, Article 37 of Loi
No 6-028 du 29 Juin 2006 fixant les règles relatives à la prevention, à la prise
en charge et au contrôle du VIH/SIDA of Mali, and Article 37(1)(e) of Lei No
5/2007 de prevençao, tratamento e controle do VIH/SIDA of Guinea Bissau.
21. Article 67 of Loi No 2005-040 du 20 Février 2006 sur la lutte contre le
VIH/SIDA et la protection des droits des personnes vivant avec le VIH/SIDA of
Madagascar.
22. See Tsankov, N. & Kehayov, A. 2005. ‘Crisis in Libya: Doctor and nurses
under death sentence’. In: Clinics in Dermatology, Vol 23, Iss 5, pp527–527.
23. See Rosenthal, E. 2006. ‘HIV injustice in Lybia – Scapegoating
foreign medical professionals’. In: The New England Medical Journal,
Vol 355, No 24, pp2505-2508; Tsankov, N. 2007. ‘The Libyan AIDS crisis
and a miscarriage of justice’. In: Clinics in Dermatology, Vol 25, Iss 1,
pp146-146; and also Smith, A.D. ‘Medics face death while Libya uses
HIV children as diplomatic pawns’, The Observer, Sunday 17 December
2006. Available at:
[http://www.guardian.co.uk/world/2006/dec /17/libya.aids].
24. See Viljoen, F & Eba, P. 2008. ‘A human rights assessment of the Draft
Bill on Defending Human Rights and the Fight Against the Stigmatisation and
Discrimination of People Living with HIV of Mozambique’. Available at:
[http://www.chr.up.ac.za/centre_projects/ahrru/docs/Comments%20
Mozambique%20Draft%20HIV%20Bill.pdf]
25. See Article 20, 22 and 26 of Loi No 030-2008 du 26 Juin 2008 portant lutte
contre le VIH/SIDA et protection des droits des personnes vivant avec le VIH/
SIDA of Burkina Faso.
26. UNAIDS emphasises the importance of HIV testing as a gateway to a wide
range of HIV-related services. See UNAIDS, Report of the Consultative meeting
on HIV testing and counselling in the Africa region, Johannesburg South Africa,
15- 17 November 2004, p15.
27. The notion of ‘constructive knowledge’ is based on the idea that the exercise
of reasonable care would have revealed the HIV infection to a person living with
HIV. Such an ambiguous concept is ill suited for HIV transmission or exposure
statutes, due to its potential to lead to unfair judgements based on prejudice and
public sentiments. See Eba, P.M. 2007. ‘Pandora’s box: The criminalisation of
HIV transmission or exposure in SADC countries’. In Viljoen, F. & Precious,
S. Human rights under threat: Four perspectives on HIV, AIDS and the law in
Southern Africa, pp30-31.
28. UNAIDS, WHO & UNFPA. ‘Position statement on condoms and HIV
prevention’. July 2004, p1. Available at:
[http://www.unfpa.org/upload/lib_pub_file/343_filename_Condom_statement.pdf].
29. When used consistently and correctly, latex condoms are considered to reduce
significantly the risk of HIV transmission. See Howe, J.M. & Jensen, P.C. ‘An
introduction to the medical aspects of HIV disease’. In Webber, D.W. (ed). 1997.
AIDS and the law. 3rd Edition, p18.
30. The failure to promote condom use is also identified as a major flaw in
HIV-specific criminal laws adopted in the United States. See Galletly, C.L. &
Pinkerton, S.D. 2006. ‘Conflicting messages: How criminal HIV disclosure
laws undermine public health efforts to control the spread of HIV’. In: AIDS
Behaviour, 10, pp453-456.
31. See Article 24(2) of the HIV Prevention and Control Act of Kenya, and Article
21(2) of the Prevention and Control of HIV and AIDS Act of Sierra Leone.
32. Article 27 of Loi No 2005-31 du 10 Avril 2006 portant prévention, prise en
charge et contrôle du VIH/SIDA of Benin.
33. See note 7 above.
34. There are several challenges associated with the promotion of
disclosure, especially for women who have been reported to face negative
reactions ranging from abandonment to violence. See A Medley, A. et
al. 2004. ‘Rates, barriers and outcomes of HIV status disclosure among
women in developing countries: Implications for prevention of motherto-
child transmission programmes’. In: Bulletin of the World Health
Organisation. Vol 82, No 4.
35. See, for instance, Chesney, M.A. & Smith, A.W. 1999. ‘Critical delays
in HIV testing and care: The potential role of stigma’. In: The American
Behavioural Scientist, 42/7, pp1162-1174, and also Waddell, E.N. &
Messeri, P.A. 2006. ‘Social support, disclosure, and use of antiretroviral
therapy’. In: AIDS and Behaviour, 10/3, pp263-272.
36. See Auerbach, J.D. & Coates, T.J. 2000. ‘HIV prevention research:
Accomplishments and challenges for the third decade of AIDS’. In:
American Journal of Public Health, 90, p1029, and also UNAIDS. 2008.
‘Policy brief on the criminalisation of HIV transmission’. p2.
37. This assessment includes all the countries in sub-Saharan Africa with HIVspecific
laws that criminalise HIV transmission or exposure, except Equatorial
Guinea. Although, this author was able to confirm that Equatorial Guinea has an
HIV-specific law criminalising HIV transmission, all his effort to secure a copy
of that law were unsuccessful.
Patrick Eba is Head of the AIDS and Human
Rights Research Unit at the University of Pretoria.
For more information and/or comments,
please contact him on +27 12 420 5399 or at
patrick.eba@up.ac.za.
10A critical appraisal of the criminalisation of HIV transmission
ALQ September/November 2008
At the beginning of 2008, in Dallas, Texas,
Willie Campbell was convicted of assault
with a ‘deadly weapon’ against police
officers who were arresting him for being
drunk and disorderly. He was sentenced
to 35 years in prison. Too bad, you may say,
but so what? Well, Campbell has HIV, and
the ‘deadly weapon’ was saliva, which he
spat into the officers’ faces. But saliva has
never been shown to transmit HIV, so the
‘deadly weapon’ Campbell wielded was
no more lethal than a toy pistol – and it
was not even loaded.
His sentence also reflected his criminal record, but there
is no denying that Willie Campbell was punished not just
for what he did, but for the virus he carried. He is not alone.
Across the world, people with HIV are going to prison,
even when they have not transmitted the virus, and never
intended to.
Bermuda recently jailed a man with HIV for 10 years for
engaging in unprotected sex with his girlfriend, even though
she has tested negative. A Swiss man was sent to jail this
year for infecting his girlfriend, even though he thought he
was HIV-negative.
In Africa – which has about two-thirds of the world’s
HIV cases – a U.S.-financed ‘model’ statute, that broadly
criminalises HIV transmission and exposure, has been
adopted by 15 countries, and others may do the same.
The law requires people who know they have HIV to
inform ‘any sexual contact’ in advance – without defining
‘sexual contact’. (Does the definition, for example, include
kissing?) Sierra Leone’s version of the law expressly brings
a pregnant mother within its terms. She can be jailed if she
does not ‘take all reasonable measures and precautions
to prevent the transmission of HIV’ to her unborn baby. In
Southern Africa similar laws have been adopted in Tanzania,
Madagascar and the Democratic Republic of Congo and are
being considered in Mozambique and Malawi.
11
A tragedy, not a crime…
September/November 2008 ALQ
A tragedy, not a crime… Michaela Clayton, Edwin Cameron, Scott Burris1
Democratic Republic of Congo: Disclosure = immediate notification of spouse and
sexual partners. Transmission = 10 yrs imprisonment and fine of 200 000 FC
United Republic of Tanzania:
Immediate disclosure to spouse
or sexual partner required.
‘Wilful transmission’ = the
transmission of HIV from an
infected to an uninfected person,
most commonly through sexual
intercourse, blood transfusion,
sharing of intravenous
needles, during pregnancy or
breastfeeding
‘Wilful transmission’ = Life
imprisonment
Madagasscar: Transmission
by recklessness, carelessness,
inattentiveness, negligence =
6 months to 2 years and a fine
of 100 000 to 400 000 ariary
Mozambique: Bill currently before
Parliament provides for: Mandatory testing:
pregnant women, sex workers, persons charged
with sexual offences Transmission: ‘Any person who deliberately, recklessly or negligently does
an act or omission that he knows or has reason to believe to be likely to infect another person
with HIV commits an offence and shall be liable to imprisonment of 14 years’
IN SOUTHERN AFRICA:
So what is behind the drive to deal with HIV through
criminal laws? It aims to stem the rising tide of HIV
infections, to protect those vulnerable to becoming
infected – especially women, who often fall prey
to careless or unscrupulous men – and to encourage
disclosure by people who know they have the virus.
…most of those who will be prosecuted…
will be women…
Good intentions, but bad policy. Studies, and more
than two decades of experience, show that making
exposure to, and accidental transmission of, HIV into
crimes does not change sexual behaviour or stem
the spread of HIV. Criminalisation is a misguided
substitute for measures that really protect those at risk
of contracting HIV: effective prevention, protection
against discrimination, efforts to reduce the stigma
associated with AIDS, greater access to testing and,
most importantly, treatment for people who are dying
of the disease.
Far from protecting women, criminalisation
endangers them. In Africa, most people who know their
HIV status are female, because most HIV testing occurs
at natal healthcare sites. The result is that most of those
who will be prosecuted because they know – or ought to
know – their HIV status, will be women. The material
circumstances in which many women find themselves
– especially in Africa – make it difficult for them to
negotiate safer sex, or to discuss HIV at all. These
circumstances include social subordination, economic
dependence and traditional systems of property and
inheritance that make women dependent on men.
Criminalisation will make women more vulnerable to
HIV, not less.
…criminalisation will
make women more vulnerable
to HIV, not less…
Moreover, criminalisation is often unfairly and
selectively enforced. Prosecutions and laws single out
already vulnerable groups – like sex workers, men who
have sex with men and, in European countries, black
males. Criminalisation also places blame on one person,
instead of putting responsibility on two. Realistically,
the risk of getting HIV (or any sexually transmitted
infection) must now be seen as an inescapable facet
of engaging in sex. We cannot pretend that the risk
is introduced into an otherwise safe encounter by the
person who knows, or should know, he or she has HIV.
The practical responsibility for safer sex practices rests
on everyone. These laws are difficult and degrading to
apply. Where sex is between two consenting adults, the
apparatus of proof and the necessary methodology of
prosecution, degrade the parties and debase the law.
What is more, the legal concepts of negligence and
even recklessness are incoherent in the realm of sexual
behaviour. We know that the ‘reasonable person’ often
has unprotected sex with partners of unknown sexual
history, in spite of the known risks – that is why we
have an HIV epidemic, and that is why interventions to
reduce unsafe sex are so important.
…the practical responsibility for safer sex
practices rests on everyone…
Criminalisation increases stigma and may well deter
HIV testing. Why would a woman in Sierra Leone or
Malawi or Tanzania want to have an HIV test that will, if
positive, put her at risk of a jail sentence, if she becomes
pregnant, or the next time she has sex? The laws put
diagnosis, treatment, help and support further out of
her reach.
The prevention of HIV is not just a technical challenge
for public health. It is a challenge to all humanity to
create a world in which behaving safely is feasible for
both sexual partners.
Criminalisation does the opposite. It is a harsh,
punitive and unproven policy toward an epidemic that
has consistently responded best to interventions that care
for and support people doing their best to be healthy.
12A tragedy, not a
crime…
ALQ September/November 2008
13
A tragedy, not a crime…
September/November 2008 ALQ
In an attempt to stem the tide of criminalisation
of HIV transmission in the SADC region, the SADC
Parliamentary Forum has developed a Draft Model Law
on HIV in Southern Africa to provide a legal framework
for the review and reform of national legislation related
to HIV in conformity with international human rights
law standards.2
Rather than criminalising HIV transmission, the
Model Law seeks to address the root causes that drive the
demand for criminalisation of HIV transmission in the
first place. It places an emphasis on removing barriers
to accessing prevention, treatment and care services,
and specifically addresses the particular vulnerability of
women to HIV in Southern Africa as a result of gender
inequality and gender-based violence3.
…to create a world in which behaving
safely is feasible for both sexual
partners…
The Model Law provides Members of Parliament,
sitting to review laws, with a framework for placing their
focus where it should be: on removing legal barriers to
HIV prevention, treatment and care, and on effectively
addressing the very factors that make women and other
vulnerable groups, such as injecting drug users, men who
have sex with men, and sex workers more vulnerable
to HIV.
Criminalising HIV transmission does not stop new
HIV infections. If we seek to use the law to address
HIV transmission, then let us do so wisely. Let us
focus on revising our laws to remove legal barriers to
HIV prevention, treatment and care services and on
using the law to fight discrimination and stigma, and
to protect women and other vulnerable groups from
HIV infection.
FOOTNOTES:
1. This article is based on an op-ed written by the same authors and
published initially in the International Herald Tribune on 7 August 2008.
2. Article 1, Draft Model Law on HIV in Southern Africa. The Model
Law has been passed at the end of 2008.
3. Article 27.
Michaela Clayton is the Director of the AIDS and
Rights Alliance of Southern Africa (ARASA);
Edwin Cameron is a justice of South Africa’s
Supreme Court of Appeal; and Scott Burris is
a law professor at the Temple University in
Philadelphia. For more information and/or
comments, please contact Michaela on
+264 61 300381 or at michaela@arasa.org.na.
It has been almost 20 years since the Australian High
Court Judge, Michael Kirby, warned of the spread of a
dangerous kind of a virus, ‘highly inefficient laws’. Even
then, Kirby identified ‘variant strains’ of highly inefficient
laws, such as laws providing for mandatory HIV testing
of vulnerable groups, or restrictions on the freedom of
movement of people living with HIV. He noted that
…the virus of which I speak is not detectable under the
microscope. It is nonetheless a tangible development,
which may be detected in a growing number of
societies. In some ways, it is as frightening and
dangerous as the AIDS virus itself. It attacks not the
body of an individual, but the body politic.2
Recognising both the contentious nature of responses
to the debates as to whether or not to criminalise HIV
transmission and the societal context in which HIV
transmission occurs and potential prosecution will take
place, it seems essential to analyse some of the realities
intrinsically linked to these debates, including existing laws
already available to prosecute such ‘offences’; lessons to be
learned from history; and the fact that laws – whether or not
existing or proposed – are not gender specific.
Wilful transmission of HIV
In the context of these debates about the criminalisation
of HIV transmission, many people have highlighted the
challenges and potential human rights abuses related to
criminalising HIV transmission. As many have emphasised
before, I have met many people, like myself, around the world
who are living with HIV, and all report, as I do, that there are
extremely few people who wilfully intend to transmit HIV
to others around them. I certainly have not met one yet.
In most countries, there is already an existing law
which covers ‘wilful’ HIV transmission – in the UK we
call it ‘grievous bodily harm’. Thus, there is no actual
need to introduce a new, HIV-specific law to address such
rare events.
Historical perspective
In relation to historical perspectives, it is not clear to
me that any public health issue has ever been effectively
addressed through punitive legislature. Look for instance at
the time of ‘prohibition’ in the US3, which failed to stop the
use of alcohol. Similarly, look at the way in which Typhoid
Mary4 was treated – interestingly, a woman, an immigrant,
on low wages as a domestic employee. The arms of public
health policy, the law and the media, combined effectively,
meant that she felt ostracised and alienated by society. Many
others actually transmitted typhoid to more people than
she did, but she was the one who was hounded – and the
treatment she received probably exacerbated the situation.
When will we start to learn from history5?
Lack of gender-specific laws
One point that has emerged very quickly in this debate
is the fact that laws are not gender-specific. Indeed, I was
talking to an ICW member who told me that:
…I didn’t realise the implications of my
recommendations until recently, when I talked to ICW.
14Placing young women and girls at greater risk
ALQ September/November 2008
Into the firing line…
Placing young women and girls at greater risk1
Responding to legislative trends towards criminalisation of HIV transmission, this
contribution is to highlight some of the aspects of criminalising HIV transmission, and to
discuss especially the extent to which these trends are affecting – and will continue to
affect – women and girls.
Alice Welbourn
At the time of supporting criminalisation of HIV
transmission, she had been sitting on a review panel, which
was advising on the implementation of new HIV-specific
punitive laws in her country. She was calling for maximum
penalties, thinking that this would be a way of stopping
men from transmitting HIV to their wives. She tells me
that only when she made contact with ICW members from
other countries did she realise that not only are these laws
dangerous for women, but also that they are not the right
way to go for anybody. HIV-specific punitive laws will just
not stop HIV.
Health policies, laws and media
The intrinsic links between health policies, laws and
media coverage are a crucial element in the debate as to
whether or not to criminalise ‘wilful’ transmission of HIV.
We are addressing here a crisis on three fronts – health
policies, the media and punitive HIV-specific laws. One
feeds off the other two in an interactive process. Take
for instance health policies. A recent study in Nigeria by
Journalists Against AIDS6 found that 70% of healthcare
providers reported that their attitudes towards HIV, and
people with HIV, were shaped by the media. Meanwhile,
health policies and practices around the world increasingly
focus on antenatal HIV testing. There are an increasing
number of reports, including from ICW7, from Amnesty
International, from Physicians for Human Rights, and
from Human Rights Watch, which consistently show that if
women are not prepared to be tested for HIV when pregnant,
or test positive for HIV, women are denied antenatal
services, are treated judgmentally by health staff, and can
experience violence and ostracism from partners and other
community members.
…the more we can all do
to resist these laws, the better…
With only few exceptions, health workers in any
community of the world are influential members of their
societies. Their views count in their communities and in
wider society. It is all too easy to see how policies, no matter
how much they initially might have been intended to be
of public health good, have quickly slipped into practices,
which judge, penalise and ostracise HIV positive women.
It is easy then for society to take this one step further and
turn HIV transmission from women to their partners, or to
their children, into a crime. So, in Sierra Leone, for instance,
a woman who transmits HIV to her child can be fined or
jailed up to seven years – or both8. Such legal judgments,
as Reynolds9 has clearly explained, fuel hysterical and
discriminatory headlines in the media – continuing the
vicious circle.
Vertical transmission of HIV
Therefore, looking more closely at what women are up
against, we can understand more clearly why many women
may indeed fear going anywhere near health services,
especially if women believe that they may be HIV-positive.
First there are the negative reactions of the ill-trained health
staff to contend with10; the lack of assured confidentiality;
and the resultant fear of violence from family and
community members. This year, we have heard of three
women in Uganda being killed by their husbands, allegedly
because the men believed that the women had transmitted
HIV to them.
Secondly, many women with HIV live either in
resource-poor settings in high-prevalence countries, or
in resource-poor settings in rich countries. They do not
15
Placing young women and girls at greater risk
September/November 2008 ALQ
have recourse to the defence of the law, which is expensive.
Many women also are faced with situations where, even
if they manage not to transmit HIV to their baby during
the birth, have no social or practical option other than to
breastfeed their baby. Lack of clean, safe drinking water;
lack of access to formula feed; and lack of access to fuel
to sterilise bottles, or other vessels, are still huge issues
for millions of women around the world. Moreover, if a
woman is seen not to breastfeed, by people around her in
a community, where breastfeeding is still the norm, she
is in immediate danger of ostracism on suspicion that she
must be HIV positive. So what options does this leave
a woman?
Thirdly, although ARVs are increasingly being rolledout
in resource-poor settings, there are still only a mere
three million, out of the ten million people living with HIV
who need ARVs now, who are in the position to access
them. What does this mean for the seven million people,
who cannot yet access ARVs? Without access to ARVs,
the chances of transmitting HIV to a baby are far greater,
than they are with ARVs. Questions need to be raised as to
whether or not the laws allow for this reality; and where
does states’ commitment to Universal Access to treatment
stand in relation to all of this?
One of ICW’s members in Uganda shared experiences
she faces in going to a clinic to access treatment:
…when he learnt that I went to the health centre for
medication, he beats me saying that I am embarrassing
him, that I am showing everybody that we are sick. Now
I fear going for services. [ICW Member, Uganda]
This is but one of the many challenges, which women
living with HIV in particular are faced with on a daily basis.
This arguably highlights one of the areas in which women
are already ‘criminalised’ and ‘prosecuted’ – without a
legislative framework. Criminalising HIV transmission is
leading to, among other things, limited access to healthcare
services.
Especially in the context of accessing PMTCT services,
the question arises of what women are supposed to do. If
a woman is following her partner’s wishes and does not
access treatment, it is more than likely that she will either be
accused by her partner of passing HIV to him, or be accused
by health workers of passing HIV to her baby.
Men’s words against women’s…
This moves us to the question of blame. It has been
frequently proven by scientific evidence that it is extremely
difficult to identify who has passed HIV to whom. However,
popular views, the media, and the law are often less
impartial.
…women to be found guilty of
‘wilful HIV transmission’ by a court of
law, irrespective how difficult condom
negotiation actually is…
Since the realisation that HIV exists in a family is often
heralded by a positive HIV test result for a pregnant woman
at antenatal clinic, the assumption is often made that the
woman must have introduced HIV into the relationship.
Irrespective of whether or not this assumption is accurate, a
woman is often at the most vulnerable stage of her life, when
she is pregnant. To have the often joyful news of pregnancy
followed swiftly by the shocking news of an HIV diagnosis
is not a pleasant experience – and I speak here from personal
experience. Even if a woman is disappointed to learn of
her pregnancy, why then should this be exacerbated by yet
more bad news of a positive HIV diagnosis, especially when
this latter news is likely to result in anger, violence and
ostracism? Take-up of antenatal services around the world
is already poor enough. Why diminish this further with the
threat of violence11 and a criminal prosecution?
As one of the poster abstracts, presented at the 2008
AIDS Conference illustrated, based on research conducted
in South Africa by the Human Sciences Research Council
and Oxford University, there are immense psychological
issues experienced by women being tested for HIV during
pregnancy12. The policy of ‘routinely’ testing pregnant
women for HIV really needs revising, until all pregnant
16Placing young women and girls at greater risk
ALQ September/November 2008
women, when testing positive, can be guaranteed all the
love, care, respect, support and treatment, for themselves
and their children, that is needed for their own safety
and those of their children. In addition to the very real
and valid fear of violence by women testing positive for
HIV during pregnancy, a woman also may decide not to
disclose her HIV positive status to her partner, for fear of
this violence. What if he wishes to continue engaging in
sex with her during the pregnancy – which is likely to be
without any form of contraception, because she is already
pregnant? Will this be tantamount to a criminal offence,
once she has learnt of her positive HIV status, even
though she may suspect that she has acquired the HIV
from her partner in the first place and that he, therefore
is also HIV positive?
…policies, no matter how much they
initially might have been intended to
be of public health good, have quickly
slipped into practices, which judge,
penalise and ostracise HIV positive
women…
Lack of education and lack of income both make
women, in general, less likely to be in the position to access
legal defence mechanisms, than men around the world. So
if a woman is accused by her partner, or others, of HIV
transmission, there is an uneven playing field in terms of
recourse to legal defence. And finally, the Model AIDS
Law, which is being rolled-out through programmes in
West Africa, proposes that health workers themselves
should turn into police – in that six weeks after diagnosis,
if someone with HIV has not yet disclosed to their partner,
the health worker should make this disclosure instead. Is this
what health workers are really there to do?
Challenges faced by health workers in Kenya clearly
indicate that this new responsibility is clearly not what
health workers envisaged as their role in relation to people
in their care.
…last month one pregnant woman tested HIV positive
in this antenatal clinic. This week she came back and
told us that she has been thrown out of her husband’s
house, divorced, desperate and alone with no relative
to turn to or any support for herself or her unborn
child. We haven’t been prepared or trained to deal
with this… [Healthcare nurse, Kenya]13
Lack of access to condoms
Looking at condom access, it is necessary to
acknowledge that we have condoms, that is still the one
most likely, consistent and effective barrier method to
prevent HIV transmission. Yet, when looking closer at
condom access in relation to women, it becomes clear that
women face numerous challenges. We know that most
women, even if they would like to use condoms, face the
realities of lack of access to money to buy condoms, and
lack of negotiation skills with partners to use them.
If anyone would want to doubt that, let’s ask ourselves
how many of us last negotiated the use of a condom with
a regular sexual partner. We often like to think that others
‘should’ behave in certain ways, without connecting these
issues to our own lives. But, if a woman cannot argue that
she took ‘reasonable precautions’ against passing HIV
to her partner, such as using a condom after learning of
her positive HIV status, then it is all too easy for women
to be found guilty of ‘wilful HIV transmission’ by a court
of law, irrespective of how difficult condom negotiation
actually is.
Family break-up
So, in the context of family life, what are the consequences
for women of criminalisation of HIV transmission, to
partners or to children? They are several. First of all, if a
woman is fined or sent to jail, there will be immense physical,
psychological and material effects on her children also,
since mothers around the world are their children’s primary
carers.14 There are vast amounts of documented information
17
Placing young women and girls at greater risk
September/November 2008 ALQ
testifying to the fact that if a woman is sick or absent, her
children are deeply affected. More than this, we need to
remember that children of a woman, who has somehow
been shamed by society, are ‘worse than orphans’. Just as in
the past, when children of sexual liaisons outside marriage
were branded as ‘bastards’, children of women penalised by
society, will also bear the brunt of society’s judgments on
their mothers. Thirdly, the physical break-up of her family is
an emotional disaster for any woman, especially for women
in societies where a woman’s role as wife and mother is all
she has in terms of her social standing.
…HIV-specific punitive laws will
just not stop HIV…
And fourthly, it seems hard to reconcile legal punitive
measures regarding HIV transmission with the promotion of
an ‘AIDS-free generation’ through public health measures,
especially when we learn from the UNAIDS15 2008 Global
Report that food shortages particularly exacerbate women’s
and girls’ vulnerabilities in relation to HIV. If a woman has
to leave her household for jail, how and where will she
find the means to feed her children, to continue to weed or
harvest her crops, buy food, collect water or firewood, or
cook for them? If a woman is fined, she often also has to
take on more work to pay the fine, or repay the debt incurred
to pay that fine – adding precious unaffordable hours to her
existing workload. Neither option is a useful addition to a
woman’s basic practical child care roles.
Stigma will continue into the future
Indeed, on most occasions when women are legally
penalised, whether financially or through incarceration, the
likely result will be permanent break-up of the family unit.
The stigma, which a woman faces through either of these
options, will not only affect her children, as well as herself,
but are also likely to affect her, and their, options for many
years to come. A woman who has been fined or jailed for
HIV transmission will carry this albatross around her neck,
both physically and emotionally for the rest of her life. The
chances of her being able to form a new relationship with
someone in the community are remote.
Making bad situations worse
So far we have been talking about women who have
otherwise been so-called ‘ordinary’ members of society. We
have not begun to think of how such punitive laws might
additionally affect women who, in some way or another,
have already experienced the brunt of societies’ punitive
attitudes.
People who have been marginalised by society in most
countries are often also legally ostracised, such as people in
the sex trade or people who use drugs. They already face
huge problems with lack of access to health, social or legal
services, and the introduction of punitive legal measures
will make their situations even worse. Moreover, with
the new UN-led drive to ‘know your epidemic’, there will
be increasing pressure of expectation on people already
at the margins of society to ‘know your status’. This is
because there is still a widely-held – but often erroneous –
assumption that women with HIV must be sex workers, drug
users, or other women who somehow or other are already
ostracised by society. So if a woman who is HIV-positive
falls into one of these ostracised categories, she will then
especially be at risk of having been expected to ‘reasonably’
know her HIV status, despite all the odds against her
reasonably daring to doing so.
Girls
It has already been widely recognised in Mother and
Child Health (MCH) circles, well before HIV came along,
that girls are less well cared for when their mothers are
sick or absent or have less education; and that girls are
taken out of school first to replace their mothers when
the latter are sick or absent. We also see now that girls are
especially ostracised if they are HIV-positive since birth,
when practically all education for young people assumes
that young people are HIV-negative; and that this is because
18Placing young women and girls at greater risk
ALQ September/November 2008
girls around the world have a heavy mantle cast around their
shoulders as the guardians of their society’s morality.
…laws to protect the rights of everyone
with HIV are good; laws designed and
introduced specifically to criminalise
transmission of HIV are fundamentally
a bad idea…
Lessons Learnt…
In England, this is reflected in the two words: ‘stags’ and
‘slags’. If a boy has multiple female sexual partners, he is
known as a bit of a ‘stag’ – a proud adult male deer. If a girl
has multiple male sexual partners, she is known as a ‘slag’:
‘…slag3 noun, derog. slang someone, especially a
woman, who regularly has casual sex with many different
people.’
What is more…
What is more? There are many aspects of sexual and
reproductive health and rights, as they relate to women
and girls, which have either already attracted punitive
legal measures, or which have not yet received the legal
protection, which they deserve to receive. These include
the fact that there are, in many countries, no adequate
laws on domestic violence and/or sexual offences, such as
rape; that there is a general lack of legislation protecting
lesbian women, as well as sex workers, from violence and
abuse; that there are property and inheritance laws, which
are unfavourable and discriminatory towards women; that
there are many countries upholding laws against access to
emergency contraceptives and safe termination of pregnancy
procedures; and that there continues to be a general lack of
regulations – or, if regulations are in place, adequate and
‘user-friendly’ regulations – pertaining to post-exposure
prophylaxis, and emergency contraceptives, for survivors
and victims of sexual assault and rape. In addition, laws
prosecuting marital rape are especially non-existent, patchy
or vague.
As for lessons learned, it seems fairly obvious, but there
are two key points that we all need to take away from this:
laws to protect the rights of everyone with HIV are good;
laws designed and introduced specifically to criminalise
transmission of HIV are fundamentally a bad idea.
We should all be aware of the pitfalls involved in the
specific criminalisation of HIV transmission and the more
we can all do to resist these new laws, the better. Once a new
law is in place, it is extraordinarily difficult to repeal it and
thus, we all need to do our utmost to avoid the introduction
of these laws in the first place.
FOOTNOTES:
1. An earlier version of this article was presented at the 2008 International AIDS
Conference in Mexico City, as part of the satellite session organised by IPPF on
this subject. I would also like to acknowledge Aziza Ahmed of ICW and Maria
de Bruyn of IPAS.
2. As quoted by Richards Pearshouse in ‘Legislation contagion: The
spread of problematic new HIV laws in Western Africa’, HIV/AIDS
Policy and Law Review, Canadian HIV/AIDS Legal Network, Vol. 12,
No. 2/3 Dec 2007, p1.
3. See, for instance, [http://www.digitalhistory.uh.edu/database/article_display.
cfm?HHID=441] for an interesting account of this.
4. See also [http://www.pbs.org/wgbh/nova/typhoid/mary.html].
5. See also [http://www.opendemocracy.net/blog/alice-welbourn/2008/
11/30/a-message-for-world-aids-day-by-alice-welbourn].
6. Rolake Odetoyinbo, personal communication, 2008. See also
[http://www.nigeria-aids.org/documents/EvaluationProject1.pdf].
7. See [http://www.icw.org/node/227, http://www.amnesty.org/en/library/
info/AFR53/001/2008/en; http://physiciansforhumanrights.org/library/
report-2007-05-25.html; http://www.hrw.org/reports/2003/uganda
0803/5.htm].
8. See [www.icw.org/node/227; http://www.ippf.org/en/Resources/
Guides-toolkits/Verdict+on+a+virus.htm].
9. ‘Race and Immigration: Determinants of a sound policy’. IAS Mexico, IPPF
Satellite session: [http://www.aids2008.org/Pag/PSession.aspx?s=475].
10. Listen, for instance, to [http://www.stratshope.org/d-audio-maura.htm].
11. Anecdotal evidence suggests that some women in South Africa begin to avoid
local antenatal care at all for fear of the consequences of a positive HIV test.
Johanna Kehler, ALN, personal communication, November 2008.
12. Rochat, T.J., Stein, A. & Richter, L. 2008. ‘Women’s feelings, attitudes,
and experiences on learning their HIV status during pregnancy in rural
South Africa.’, Poster exhibit, THPE0923, IAS Mexico, 2008.
13. Heard in NE Kenya, May 2006.
14. In addition, sending a child’s mother to jail also contravenes the rights of the
child according to Article 9 of the CRC.
15. See [http://viewer.zmags.com/showmag.php?mid=wwfwrp#/page0/].
Alice Welbourn is a writer, trainer and activist
with 30 years’ experience in gender, health,
and international community development.
For more information and/or comments, please
contact her on alice@icw.org
19
Placing young women and girls at greater risk
September/November 2008 ALQ
Background
Since the advent of the AIDS epidemic, sex workers, as a
group, have been at high risk of contracting HIV and STIs.2
Factors such as the criminalisation of sex work, concurrent
sexual relations, the difficulties in obtaining and using HIV
prevention technology, on-going exposure to high levels of
violence (in particular gender-based violence), stigma and
the barriers to accessing healthcare services, compound and
interlock to render sex workers particularly vulnerable to
HIV and AIDS.
Sex work in South Africa – what are the
research gaps?
South Africa has one of the largest STI epidemics in the
world3 and is the country with the most people living with
HIV and AIDS.4 It is, therefore, not surprising that HIV
prevalence amongst sex workers in Hillbrow was found to
be 45% in 1998,5 while in the same year sex workers at a
mining project in Carltonville had an HIV prevalence of 69%.6
In the latter study, sex workers had an HIV prevalence rate
that was more than three times higher than the 20%
prevalence rate of that segment of the general population.
Regrettably, these studies are more than a decade old
and significant gaps exist in our knowledge on sex workers.
We do not know how many women work as sex workers in
South Africa; from where they originate; the HIV and STI
prevalence rates in this population; whether or not they are
able to access general healthcare services; whether or not
HIV prevention and treatment services are reaching sex
workers; and the extent to which criminal laws contribute
to their vulnerability to HIV. Other gaps in our knowledge
include how the number of sex workers is affected by
increasing unemployment, as well as cross-border migration
to South Africa, where their various places of work are, and
who their clients are.7
Sex work and the law
Sex work is illegal in South Africa.8 The South African
Law Reform Commission (SALRC) has been tasked to
provide solutions to the legal problems attached to sex work.
The SALRC released an Issue Paper in July 2002 and listed
three options in relation to sex work and the law:
• Criminalise all aspects of adult prostitution as
criminal offences;
• Legalise adult prostitution within certain narrowly
circumscribed conditions;
• Decriminalise adult prostitution, which will
involve the removal of laws that criminalise
prostitution.
Ongoing criminalisation of sex work in South Africa
would maintain the status quo, while decriminalisation
of sex work would see all laws that criminalise sex
work removed. Sex work would, thus, be like any other
profession and would enjoy the protection of labour and
occupational health laws. Legalisation would entail the
decriminalisation of sex work within certain areas only
(i.e., zoning of sex work), and sex workers would, for
instance, have to register with authorities and submit
themselves to mandatory health checks.
The SALRC is mandated to release a Discussion
Paper after the Issue Paper, which will contain proposed
legislation. The Discussion Paper will be open to public
comment, after which the SALRC will submit a final
report with recommendations to the Minister of Justice and
Constitutional Development. Although, more than five years
have passed since the publication of the Issue Paper, the
SALRC has yet to publish its much-anticipated Discussion
20Criminalisation of sex work…
ALQ September/November 2008
Criminalisation of sex work…
Sex work, HIV and AIDS and the socio-legal context in South Africa1
Marlise Richter
Paper. Current predictions are that the Discussion Paper will
be released in late January 2009.9
…significant gaps exist in
our knowledge on sex workers…
Why is the decriminalisation of sex work
necessary to mitigate HIV?
Sex workers’ health is compromised by violence,
stigma, the intrinsic nature and dangers of their work,
economic hardship, and the lack of access to services and
support. All of these factors are aggravated and entrenched
by a legal system that criminalises the industry. The public
health consequences of, and human rights abuses entailed
by, criminalisation of sex work have been well documented
in the literature. Arguments canvassed in a South African
context highlight the following consequences of the ongoing
criminalisation of sex work:
• Increasing sex workers’ vulnerability to violence
from clients, partners and police;
• Creating and sustaining unsafe and oppressive
working conditions;
• Increasing the stigmatisation of sex workers;
• Restricting access to health, social, police, legal
and financial services;
• An adverse impact on safer sex practices; and
• Impacting on the ability to find other
employment.10
All of these factors impact adversely on sex workers’
ability to protect themselves from HIV, prevent HIV
transmission to their sexual partners, and to access the
necessary HIV-testing, treatment, support and care.
Sex work and the National
Strategic Plan 2007-2011
South Africa’s National Strategic Plan 2007-2011 (NSP)
explicitly rejects discrimination against sex workers11;
acknowledges the increased vulnerability of sex workers
to HIV12; and recommends the rolling out of customised
prevention packages for sex workers.13 Significantly,
the NSP recommends that sex work in South Africa is
decriminalised.14
Yet, little progress has been made on any of these targets
or recommendations.
Conclusion & Recommendations
A recent systematic review of the literature, on effective
interventions to prevent HIV and other STIs amongst sex
workers in resource-poor settings, found that combining
sexual risk reduction, condom promotion, and improved
access to STI treatment reduces the risk of HIV and
STIs to sex workers involved in the intervention.15 The
importance of structural interventions, policy change, and
the empowerment of sex workers in reducing HIV and STI
prevalence was also emphasised. This research provides a
strong rationale for the provision of sex worker-specific
health and social services, dismantling the discriminatory
legal environment, and safeguarding the human rights of sex
workers – all elements that are contained in the NSP.
…sex workers’ health
is compromised…
The NSP provides a sound framework of principle, as
well as a systematic plan of action in dealing with HIV and
AIDS and sex workers, with the South African National
AIDS Council (SANAC) as its custodian. SANAC has not
yet prioritised sex workers as a vulnerable group within
the South African AIDS epidemic, nor has it pushed for
the decriminalisation of the industry in line with the NSP
recommendations.
This can still be remedied and in light of this, the
following recommendations are submitted:
Decriminalise sex work in South Africa
The Programme Implementation Committee (PIC) of
21
Criminalisation of sex work…
September/November 2008 ALQ
22Criminalisation of sex work…
ALQ September/November 2008
SANAC should focus its energies on the recommendations
within the NSP to decriminalise sex work, and dismantle all
forms of discrimination against sex workers. SANAC may
legitimately seek ways of conveying, to the South African
Law Reform Commission and the Minister of Justice and
Constitutional Development responsible for it, the intense
urgency surrounding the finalisation of the Discussion
Paper. The build-up towards the FIFA World Cup, which
has prompted calls to decriminalise the industry, provides
a strategic opportunity for effecting changes to the legal
framework on sex work.16
Upon the release of the Discussion Paper, the SALRC
will request input and comments on the Paper. The PIC
should put forward a submission, on behalf of SANAC,
supporting the call for decriminalisation of sex work.
…aggravated and entrenched by a legal
system that criminalises the industry…
Implement and fund sex work-specific programmes
The PIC should collaborate with government
departments, civil society and service-based organisations
to implement sex worker-specific social, health and
economic programmes that target and strengthen the
well-being and legal position of sex workers. These
programmes should also include a focus on sex worker
clients, and provide tailored education and health services
to men. This is in line with the targets and recommendations
of the NSP. It is vital that sex workers are consulted and are
included in every phase of the planning and implementation
of these programmes. The health model provided by the
Reproductive Health & HIV Research Unit’s Sex Worker
Project should be replicated in other urban areas, and be
adapted to rural and semi-urban areas.17
Strengthen research on sex workers
Research on sex work in South Africa and in the
Southern African region should be expanded, and should
include a focus on non-national migrant sex workers.
Research is urgently needed on HIV prevalence rates
amongst sex workers and their sex partners, the barriers
that sex workers face in protecting themselves against
exploitation, ill-health and HIV, as well as the difficulties
they face in accessing HIV prevention, testing, treatment,
support and care services. This research should inform
appropriate, sensitive and context-specific interventions
for sex workers.
FOOTNOTES:
1. This article is based on a Policy Brief, commissioned by the Reproductive
Health & HIV Research Unity, University of Witswatersrand, 15 October 2008.
2. UNAIDS. 2002. Sex Work and HIV/AIDS. In UNAIDS (Ed.) Technical
Update. Geneva; and Evans, C. 2005. Toolkit for targeted HIV/AIDS
prevention and care in sex work settings. Geneva, WHO.
3. Johnson, L., Bradshaw, D. & Dorrington, R. 2007. ‘The burden of
disease attributable to sexually transmitted infections in South Africa in
2000’. In: South African Medical Journal; 97, pp658-62.
4. UNAIDS. 2008. Report on the global HIV/AIDS epidemic 2008.
5. Rees, H., Beksinska, M. E., Dickson-Tetteh, K., Ballard, R. C. & Htun,
Y. E. 2000. ‘Commercial sex workers in Johannesburg: risk behaviour
and HIV status’. In: South African Journal of Science; 96, pp283-284.
6. Williams, B. G., Taljaard, D., Campbell, C. M., Gouws, E., Ndhlovu,
L., van Dam, J., Carael, M. & Auvert, B. 2003. ‘Changing patterns of
knowledge, reported behaviour and sexually transmitted infections in a
South African gold mining community’. [Miscellaneous]. In: AIDS, 17,
pp2099-2107.
7. A recent study in Cape Town cast some light into sex work conditions
in Cape Town, but did not focus on health and HIV. See: Gould, C. &
Fick, N. 2008. Selling sex in Cape Town: Sex work and human trafficking
in a South African city. Pretoria/Tshwane, Institute for Security Studies.
8. It is made a criminal offence under section 20(1A)(a) of the Sexual
Offences Act, 23 of 1957.
9. Telephonic conversation with Cathi Albertyn (Commissioner: SALRC),
15 October 2008.
10. This is a summary of the arguments that were advanced in the
Constitutional Court in Sex Worker Education & Advocacy Taskforce
(SWEAT), the Centre for Applied Legal Studies (CALS) & the
Reproductive Health & HIV Research Unit (RHRU) (2002) Amicus
curiae submission in the case Jordan v State. Johannesburg.
11. Department of Health. 2007. HIV & AIDS Strategic Plan for
South Africa 2007-2011 [National Strategic Plan]; pp60&96.
[http://www.info.gov.za/otherdocs/2007/aidsplan2007/]
12. National Strategic Plan, pp32, 35-36.
13. National Strategic Plan, p86.
14. National Strategic Plan, p120.
15. Shahmanesh, M., Patel, V., Mabey, D. & Cowan, F. 2008. ‘Effectiveness
of interventions for the prevention of HIV and other sexually transmitted
infections in female sex workers in resource poor setting: a systematic
review’. In: Tropical Medicine and International Health, 13, pp659-79.
16. Germany legalised sex work in 2002 – four years before hosting the
FIFA World Cup. See Groneberg, D. Molliné, M & Kusma, B. 2006. ‘Sex
work during the World Cup in Germany’. In: The Lancet , Volume 368 ,
Issue 9538 , pp840-841.
17. See, for example, Pleaner, M., Motloung, T. & Richter, M. 2008.
‘Working with Sex Workers – A Resource Pack for Health Care Providers’.
In: Reproductive Health & HIV Research Unit (Ed.) Johannesburg,
Reproductive Health & HIV Research Unit.
Marlise Richter is a Researcher at the Steve Biko
Centre for Bioethics, Wits University.
For more information and/or comments,
please contact her on +27 11 717 2663 or at
marlise.richter@wits.ac.za.
The criminalisation of HIV transmission
and its implications for women has been
receiving a lot of attention – both from
those who are infected and those who
are affected – and numerous perspectives
have emerged. Although consensus has
been reached in both camps, the modus
operandi, or rather terms and conditions,
are quite contrary.
HIV is an illness – Facts and correlations
It is well documented that very few people can pinpoint
for certain, and provide empirical proof, of by whom
and when they were infected with HIV. It is also well
recognised that the progression of the illness is influenced
by numerous factors, including experiences of the self –
in that every individual experiences the illness differently
both physiologically and emotionally.
The risk of HIV infection is similarly linked to
numerous factors – besides the biological make-up – and
includes the occurrence of gender-based violence; the
general lack of access to information; socio-economic
factors and dependencies, impacting greatly on the risk
of HIV transmission; cultural and religious beliefs,
perpetuating especially women’s risk to HIV; gender
inequality, leading to women’s lesser power to negotiate
condom use; and high incidences of sexual abuse and rape.
Moreover, HIV risks and vulnerabilities are maintained by
HIV-related stigma and discrimination; by a general lack
of political will to address the underlying factors of the
pandemics; recurring misrepresentation of information
about the risk of HIV transmission, leading to greater HIV
risks for people with lesser power and resources to access
information; and a general lack of access to preventative
measures, especially women-initiated and controlled
HIV prevention measures.
Implications of criminalisation
The criminalisation of HIV transmission is neither
responding to, nor reducing, prevailing HIV risks
and vulnerabilities. On the contrary, criminalising
HIV transmission will reinforce existing risks of HIV
transmission, and lead to the further criminalisation of
people living with HIV.
Criminalisation will turn HIV into a ‘weapon’,
insinuating that all people infected with HIV have the
desire, potential, and intent to use this ‘weapon’ to harm
others. Criminalisation will further endorse the oppression
of women – as women are ‘first to know’ and thus, women
will be easy ‘targets’ for prosecution. Criminalisation will
also give momentum to the patriarchal system – as existing
gendered power relations will be strengthened, instead of
addressed. And finally, criminalisation will impact on the
overall well-being of women infected with HIV – as women
will have to endure the whole process of the ‘law’, with little
or no access to resources and redress.
The fear of being criminalised, and potentially
prosecuted for transmitting HIV, is likely to lead to a
reduction in HIV testing, as not knowing one’s HIV status
seems to be the ‘safer’ option. Criminalisation will impact
greatly on access to healthcare services, as people are likely
to avoid accessing pivotal healthcare for fear of being
tested for HIV, and/or discovered to be living with HIV.
23
Perceived as potential criminals…
September/November 2008 ALQ
Perceived as potential
criminals…
Thoughts on criminalisation of HIV transmission and its implications for women
Raphaela Madlala
As such, people living with HIV will be largely perceived as
potential ‘criminals’ waiting to be prosecuted – increasing
stigma, discrimination and other violation of rights.
Challenges of proof
Prosecuting the ‘crime’ of transmitting HIV to another
person raises a number of questions in relation to empirical
proof. While it is quite possible to prove whether or not the
‘accused’ had knowledge of her or his HIV status, proving
‘intent’ to transmit the virus to another seems impossible –
especially considering that this would entail that the person
had a thorough understanding of the nature and modus
operandi of the virus holistically. Though faithfulness seems
to be an obvious defence, proving faithfulness however,
is logically impossible.
…criminalisation will also give
momentum to the patriarchal system…
These are a few of the challenges relating to proof
clearly indicating that the application of laws criminalising
HIV transmission are questionable, as well as less than
objective – and as such likely to be biased and not favourable
to women, as women have lesser resources to engage with
the court of law.
Conclusion and alternatives
Criminalisation of HIV transmission is counterproductive
to the many efforts of ensuring greater access to
HIV prevention, testing, treatment, support and care. Laws
criminalising HIV transmission are also counter-productive
to the progress made with regard to human rights protections
in the response to HIV and AIDS.
Moreover, the criminalisation of HIV transmission
promotes the discrimination against people living with HIV
– further driving transmission of HIV, instead of reducing
HIV transmission.
And finally, it has to be recognised that criminalisation
of HIV will not only increase HIV-related stigma, but also
that statues criminalising HIV transmission incites violence
against women who are openly living with HIV, as positive
women will be ‘labelled’ as potential criminals.
…is likely to lead to reduction in
HIV testing, as not knowing one’s HIV
status seems to be the ‘safer’ option…
Assuming that the goal is to reduce HIV transmission,
to minimise the impact of HIV, and to promote and protect
human rights in the context of the pandemics, then efforts
and resources should be spent on the underlying factors
driving the HIV and AIDS pandemics and not on legislation,
which will erode and compromise many of the achievements
made. Ensuring greater access to preventative measures;
supporting and encouraging new preventative measures,
such as microbicides should be areas of priorities. As for
law reform processes, focussing on the decriminalisation
of sex work, the decriminalisation of homosexuality, and
the criminalisation of human trafficking seem more
pertinent areas for law reform at this time of the pandemic.
And in re-evaluating the focus of new avenues to halt
the pandemics, we might be in the position to truly develop
measures that will achieve both the decline in prevalence
and the protection of women.
Raphaela Madlala is with ICW Southern Africa.
For more information and/or comments, please
contact her at madlalarafiki@yahoo.com
24Perceived as potential criminals…
ALQ September/November 2008
In 2007, the Joint Working Group, a
national forum for LGBTI-focused
organisations, initiated the 070707
Campaign in response to the
escalating violent crimes of hate
against black lesbians living in
townships and rural communities.
This campaign was launched after
the violent and brutal murders of
Sizakele Sigasa and Salome Masooa in
Meadowlands, Soweto on the 07th July 2007.
The Western Cape End Hate Campaign, under the
banner of the National 070707 Campaign, was launched
in Cape Town in February 2008 on the 2nd anniversary of
the brutal murder of 19 year old Zoliswa Nkonyane, stoned
and bashed to death on the 6th February 2006 by a mob of
20 heterosexual men in Khayelitsha.
These women, together with other victims of violent
homophobic hate crimes, have one thing in common – they
were killed, because they chose to live their lives as out
gay, lesbian, bisexual, transgendered persons. They were
victimised, violated, brutalised and targeted, because of
their homosexual orientation.
Despite having one of the most liberal and celebrated
constitutions; despite progressive legislation; despite a
democratic system; and despite national campaigns, like
the 16-days of activism, vulnerable people, like women,
children and LGBT persons, still cannot access their
constitutional rights – and are still forced to live on the
margins of society.
Ignoring attitudes and negative mindsets are a huge
challenge even in an age of information-overload –
information regarding our rights; our health; HIV and
AIDS; safer-sex messaging; substance and drug abuse;
sexual diversity; etc-etc-etc. Fourteen years into democracy,
and we have not been successful in shifting attitudes,
altering stereotypes, reducing prejudice and discrimination,
and breaking the silence of stigma and fear. Despite
advocacy and human rights programmes, we are not
winning ‘the battle’ to change society, and to heal the
divides of our political past.
We cannot deny the power that exists within stigma and
prejudice. Even activists and human rights defenders are
in denial about their own prejudices – we think that we are
immune to the affects of our political past and we assume
that just because we are in the field of human rights, we
understand the issues.
Stigma and prejudice attached to HIV run deep and we
are only prepared to challenge this when we are personally
affected. When you are gay or lesbian, people assume you
are promiscuous, that you engage in ‘abnormal’ sexual
conduct and that you live an amoral lifestyle. HIV and AIDS
in many communities are still generally associated with gay
sex or lesbian sex.
Because of the ignorance that exist with regards to
sexual diversity and the issues facing LGBT persons;
because of the rise of fundamentalism and the drive for
ethnic cleansing; because of the escalation of hate speech
and violent homophobic attacks, particularly in townships
and rural communities, criminalisation of HIV will further
25
WC End Hate Campaign
September/November 2008 ALQ
Still forced to live on the margins of society…
Western Cape End Hate Campaign1
Marlow Valentine
marginalise vulnerable groups, particularly black lesbian
and bisexual women, and effeminate gay men.
The construction of gender, power and privilege,
class, race, culture, religion and the social construction
of heterosexuality in our hetero-normative society are
fundamental to this discussion. Our masculine and
patriarchal society is heavily influenced by the current
political, cultural and religious climate:
• By being a woman in Africa or in our country, you
are already marginalised and disadvantaged by the
way in which gender identity and sexual identity
has been constructed over time.
• If you are a black woman, you are further
marginalised socially, politically, economically,
intellectually – even in terms of culture, tradition,
religion, marriage, etc.
• If you are a gay or bisexual woman, the odds are
stacked even more against you as you are not only
marginalised, discriminated or prejudiced by the
broader society – you are ostracised by fellow
women as well.
In the case of Zoliswa, the attack on her and her partner
was initiated by a woman, who taunted them and called them
‘tomboys’, and ‘recruited’ the mob to attack them.
Through the End Hate Campaign, the alliance partners
ask the following questions:
• Where do the sites of power lie? How do the SAPS,
the judiciary, the healthcare system contribute to
the increase of ‘that’ power and control?
• In a country where there is no legislation around
Hate Crimes, how can we ensure advocacy and
lobbying for laws that protect the victim against
violence borne out of hate and prejudice – and not
further stigmatise or victimise the victim?
• How can we ensure that vulnerable persons within
society – which include persons who present
or express themselves in terms of their gender
identity as butch women or effeminate men –
know and understand their rights and have access
to claiming their rights?
• How can we ensure that crimes of hate;
gender-based violence within society and domestic
relationships; sexual abuse and assault; rape –
be it vaginal or anal – is reported and recorded by
the relevant authorities?
• How can we ensure that lesbian and bisexual
women caught-up or forced into heterosexual
relationships receive the necessary emotional
support, understanding and healthcare in safe
environments, as they are usually victims of
abuse – and are vulnerable to be infected by their
heterosexual male partners, who have multiple
sexual partners – and engage in risky, unsafe sex?
The WC End Hate Campaign has been active for the past
nine months in the greater Cape Town area. We have been
monitoring trials and reported cases and are appalled at the
lack of political will by those, who make the laws of this
country and those, who enforce the law.
…criminalisation of HIV will further
marginalise vulnerable groups,
particularly black lesbian and bisexual
women, and effeminate gay men…
Two years later, there is still no justice for Zoliswa,
her family and the witness. This case has been postponed
22 times in the Khayelitsha Regional Court – the trial has
still not begun in earnest. We are further outraged that
the spotlight of the 16-days will be turned off and the
campaigns packed away for yet another year without
any meaningful progress in the reduction of fear, stigma,
prejudice and the effect gender-based violence has on us as
a community.
Criminalisation is ineffective, if we fail to educate,
change attitudes and alter behaviour.
FOOTNOTES:
1. This article is based on a paper presented at the ‘HIV Criminilisation’
Roundtable, 27 – 28 November 2008, Cape Town, South Africa.
Marlow Valentine is the Deputy Director at
the Triangle Project and the Provincial Convenor
of the WC End Hate Campaign. For more
information and/or comments, please
contact him on +27 21 447 8435 or at
marlow@triangle.org.za.
26WC End Hate Campaign
ALQ September/November 2008
The International Community of Women Living
with HIV/AIDS (ICW), the Legal Assistance Centre
(LAC), and the Southern Africa Litigation Centre (SALC)
have provided documentation on thirteen cases of
HIV positive women, who were subjected to coerced
or forced sterilisation at public hospitals in Namibia,
to the Deputy Minister of Health and Social Services,
Petrina Haingura. The documented forced and coerced
sterilisations occurred at Katatura State Hospital,
Central State Hospital, and Oshakati State Hospital.
‘Coerced sterilisation’ is generally defined as the use
of coercion in obtaining the necessary informed
consent for the sterilisation procedure. ‘Forced
sterilisation’ refers to instances where the woman is
unaware that she would be undergoing a sterilisation
procedure at the time of the surgery, and only learned
of the sterilisation after the fact.
Female sterilisation can occur either via a
hysterectomy (the removal of the uterus), or through a
tubal legation (restricting the Fallopian tubes such that
a woman’s egg does not reach her uterus). Both
are serious surgical procedures and are considered
permanent. Both often occur while a woman is
undergoing a caesarean section.
Coercive or coerced sterilisation
The thirteen documented cases of forced and
coerced sterilisation are only the tip of the iceberg. Of
the 230 HIV positive women in education programmes
facilitated by ICW, 40 have indicated that they were
subjected to forced or coerced sterilisation. The ICW
is continuing to work on providing documentation of
additional cases.
At least two of the women subjected to coerced
or forced sterilisation have filed cases before the
High Court, alleging violations of their right to life,
human dignity, equality, and the right to be free from
cruel, inhuman and degrading treatment. The women
are represented by the LAC.
In all thirteen of the cases documented, informed
consent was not adequately obtained due to one or
more of the following factors: consent was obtained
under duress; consent was invalid, as the women were
not informed of the contents of the documents they
signed; and medical personnel failed to provide full
and accurate information regarding the sterilisation
procedure.
In at least six of the cases, consent was obtained by
Denying us the right
to reproduce…
Forced and coerced sterilisation of HIV positive women1
Jennifer Gatsi
2317
Regional View
September/November 2008 ALQ
medical personnel in situations of duress. In a number
of cases, women were asked to sign consent forms
while they were in labour, or on their way to the
operating theatre. In other cases, women were told,
or given the impression that they had to consent
to sterilisation in order to obtain another medical
procedure, such as an abortion or caesarean section.
Women were asked to sign a consent form for
sterilisation, without being informed of the contents of
the form, in at least six of the cases.
In all of the cases, the medical personnel failed
to provide the women with a full description of the
nature of the procedure, its effects, consequences, and
risks. No medical personnel informed the women of
the irreversible nature of the procedure, or provided
information on alternative forms of birth control
and family planning. In addition, no information was
provided on the potential side effects of sterilisation.
In many cases, the women’s continuing trauma of
being subjected to coerced or forced sterilisations is
compounded by the discriminatory treatment they
experienced. In one of the cases documented, nurses
at the Oshakati State Hospital refused to touch the
patient and made disparaging remarks about her.
Namibia’s constitutional guarantees and
international human rights obligations
Forced or coerced sterilisation violate numerous
rights guaranteed under the Namibian Constitution
and Namibia’s obligations under international and
regional law, including the right to be free from cruel,
inhuman and degrading treatment; the right to liberty
and security of person; the right to health and family
planning; the right to privacy; the right to equality and
to be free from discrimination; and the right to life.
To ensure that the abovementioned rights are not
violated, doctors are required to obtain the informed
consent of patients before they undertake any
sterilisation procedure, including a tubal legation
or a hysterectomy. This requires that the patient be
fully informed and that consent be obtained freely
and without any coercion. This did not occur in the
documented cases.
Namibia’s neighbour, South Africa, has, through
legislation, mandated that consent be obtained prior
to any sterilisation and, further, that consent must be
‘given freely and voluntarily’, without any inducement.
No such legislation exists in Namibia currently.
Advocacy responses
A submission by ICW to the Deputy Minister of
Health on the 15th of July 2008 highlighted that
forced or coerced sterilisation violated numerous
rights guaranteed under the Namibian Constitution;
Namibia’s obligations under international law;
Namibia’s human rights obligations under the African
Charter on Human and People’s Rights; and the
Protocol on the Rights of Women in
Africa. Rights violated under these
28Regional View
ALQ September/November 2008
agreements include the right to be free from cruel,
inhuman and degrading treatment; the right to liberty
and security of person; the right to health and family
planning; the right to privacy; the right to bodily
integrity; the right to equality and to be free from
discrimination; and the right to life.
In addition to lobbying the Ministry of Health
and other policy makers, ICW continues to engage in
research and advocacy with partner organisations, in
order to raise awareness of sterilisation in Namibia,
and to end the forced and coerced sterilisation of
women living with HIV.
ICW and the Women’s Health Project tried to
identify cases of coerced or forced sterilisation
throughout Namibia, and provided information about
rights violation in the context of coerced and forced
sterilisation, as well as support to women who were
subjected to sterilisation without consent.
Lessons learned
Findings from key informant interviews and media
outreach show that coercive sterilisation of HIV positive
women is regularly occurring, when HIV positive
women access healthcare services during pregnancy,
such as a caesarean section.
Next steps
Redressing and halting coerced and forced
sterilisation is recognised as a cornerstone of efforts
to advance the sexual and reproductive rights of HIV
positive women. The International Community of
Women Living with HIV and AIDS is partnering with
regional and global entities to raise the visibility of
these rights violations, and to work within the
healthcare system and human rights accountability
mechanisms to halt this practice.
As women and girls living with HIV and AIDS, our
reproductive rights are being compromised by such
practices within the healthcare system. It is very clear
that forced or coerced sterilisation of HIV positive
women is an expression of denying us the right to
reproduce, and as it is women specific, it has the
potential to create some controversy as an
advocacy issue.
As such, we demand forced and coerced
sterilisation to be put to an end, as it is a violation
of women’s fundamental rights and in so doing
send a clear message to those entrusted to provide
medical care that such unlawful behaviour will not
be tolerated.
FOOTNOTES:
1. An earlier version of this paper was presented at the
HIV Criminalisation National Roundtable Discussion,
27 – 28 November 2008, Cape Town, South Africa.
Jennifer Gatsi is from the Women’s Health
Project and a member of ICW Namibia. For
more information and/or comments, please
contact her on namibia@icw.org.
29
Regional View
September/November 2008 ALQ
Invisibility of gender violence
augmented…
Implications of HIV criminalisation
Jameyah Armien
Introduction
Canada 2006 and Mexico 2008 respectively hosted the
XVI and XVII International AIDS Conferences, where
once again emphasis, apprehension and dissatisfaction were
shown with countries, who have instituted laws criminalising
HIV or countries in the process of investing in legislation
to pass similar laws. This caused enormously vehement
debates concerning the risk and ‘benefits’ thereof, as these
criminalisation laws have, thus far, been ineffectively
implemented, creating further violation of people’s rights1.
Further to this, it does not aid in de-stigmatising HIV and
AIDS but on the contrary, adds to discrediting persons living
with HIV. As HIV and AIDS is still viewed as a female
epidemic, a huge concern is the lack in reducing gender
violence, as criminalisation adds to increasing gender
violence aimed specifically at vulnerable groups.
South Africa’s responsibility towards
non-criminalisation of HIV
South Africa’s constitutional environment2, more
specifically the Bill of Rights, promotes basic human rights
which encompasses vulnerable, marginalised, and persons
living with HIV and AIDS. This implies that the South
African government can be held liable for any legislation
promoting, inciting or instigating violence.
Criminalisation of HIV is one such possible legislation,
where rights will be blatantly ignored. Since the HIV and
AIDS epidemics were first diagnosed, consistent reports
of stigma and discrimination have been received by people
living with, or believed to be vulnerable to, the HI virus.
These discriminations incessantly overlap demographical
domains, such as age, social, political and more importantly,
gender boundaries, which has simply embedded women’s
‘perceived role’ in the HIV pandemic – in predominantly
heterosexual relationships – as being the ‘carrier’ of the
HI virus3.
South Africa’s equality clause4 enforces the
responsibility on all to ensure that equal treatment of all
is practised, promoted, protected and respected. However,
traditional gender norms and practices have historically
been used to treat, especially marginalised groups –
including women, children, lesbian and transgender
women – unfairly. This reflected the inequality being
experienced by vulnerable groups, and especially,
seeing women as bearing the disproportionate burden of
reproductive health problems, being primarily responsible
for contraception and childcare, and to have less power to
negotiate sexual relationships5.
Implications of HIV criminalisation
Criminalisation frameworks will contribute to unequal
norms by allowing a minority of people the power to decide
on behalf of others. This becomes not just problematic, but
also invasive, as decisions made on behalf of others could
be met with disagreement, and abuse could be seen as a
possible method of adherence to these laws. This method of
adherence could be enforced through violence by partners
and even communities wanting to take the law into their
own hands, or looking for a ‘legal’ way of dealing with
HIV infected persons. Therefore, the mere consideration
of criminalising HIV is unacceptable, as any kind of
instigation of violence is dangerous to control, or to keep
account of.
30Implications of HIV criminalisation
ALQ September/November 2008
These lessons could also be learned from current
criminalisation laws, where application of these laws are
too broad, ineffective and open to various interpretations6,
which can lead to forced and degrading treatment of
others. Consequently, the most alarming factor of HIV
criminalisation is that the most vulnerable voices within
communities will be further repressed through means of
violence, and will be silenced to such an extent that they will
not be heard, due to fear of intimidation, exploitation and
ill-treatment. These minority voices will be overpowered by
those who feel that they have the power, through legislation,
to decide for and on behalf of others what is considered to
be ‘in their best interest’. Verbal and psychological abuse
is extremely intimidating and difficult to understand as it
requires the ability of power to oppose. Within any
relationship, the ability to overcome gender violence is
complicated, and even more so, within relationships where
gender violence has been aggravated by a positive HIV status.
Moreover, criminalisation of HIV transmission
contradicts and compromises the right to privacy, as it
implies that people living with HIV will have to disclose
their HIV status. Disclosure will no longer be an informed
and personal decision, but will be a decision made on
behalf of people, who have been infected with, and affected
by, HIV. These ‘silent rules of disclosure’ will be unjustly
executed, as people will find mechanisms to ensure that HIV
positive persons’ statuses are revealed. Communities would
be constantly in conflict, as they would justify their attitudes
and behaviours by what the law promulgates. In addition,
there is also the risk that HIV criminalisation will lead to
less community support and mobilisation programmes
addressing stigma and discrimination7.
Violence will be enforced in the name of the law as the
judiciary and communities raise ‘valid reasons’ for HIV
infected people to disclose their HIV status, even though
current legislation affords the right not to. This will ensure
that vulnerable groups, such as women and children, will
be discriminated against further, as their power to negotiate
non-disclosure will be non existent. In addition to this, the
responsibility of protection against HIV transmission, and
other sexually transmitted diseases, will be one person’s
responsibility and not an individual or personal responsibility
of each person8. This alleviates the responsibility of
protection from one partner, as criminalisation will ensure
safer sex is always the responsibility of the ‘other’ person.
Where then does it leave past and current conscientious
behavioural change programmes around HIV transmission
and safer sex? Criminalisation will promote blame,
which may ultimately lead to violent reactions and
behaviours, especially as protection, prevention and
promotion of HIV will always be considered another
person’s responsibility.
…solely be responsible
for augmenting gender violence…
Criminalisation of HIV legislation will ensure that
stigma and discrimination is further ingrained into social
norms, and that the right to non-disclosure becomes an
irresponsible act towards others. We are already struggling
with patriarchal rights, which are constantly evolving, how
then do we foresee the conceptualisation of criminalising
HIV to assist human rights in ensuring that equality is
achieved? This criminal behaviour irresponsibly allows
people to be treated unfairly and differently, instead of
ensuring that each person’s choice is respected. This
criminalisation legislation will ensure that people, who treat
others unfairly, are not held accountable for their actions,
and that they determine the ethics of the next person’s
personal behaviour.
Gender violence will further be exacerbated when it
comes to testing and treatment of HIV. Consequently,
HIV testing for women is already considered challenging,
as disclosure thereof to their partners may lead to physical
or psychological harm. The non-disclosure clause allows a
partner to make an informed decision to disclose once they
are ready, thus, reducing the risk of violence. Criminalising
HIV will, therefore, have a huge influence on HIV testing,
as it will be a way of identifying persons, irrelevant of the
status, who have been for HIV testing. It will be a persuading
factor for people wanting to be voluntary tested, as vulnerable
31
Implications of HIV criminalisation
September/November 2008 ALQ
groups will be fearful of additional stigmatisation, or bodily
harm, by personal and social relationships.9 The mere
consideration of HIV criminalisation laws makes HIV
testing daunting, as these laws are poorly drafted, unclear
and open to interpretation.10
…to whose benefit
and to what purpose
will criminalisation of HIV be?…
A primary weakness of HIV criminalisation legislation
is that it does not address the role of gender inequality
relations, and how this plays a role in sexual and reproductive
life, and/or HIV prevention, treatment and testing. The
changing face of the epidemic over the past few decades
has highlighted the gender and social inequalities that shape
people’s behaviours and limit their choices.11 However,
in view of these inequalities, the right to privacy will be
further violated should HIV transmission be criminalised.
A criminal legal framework to address the issue of HIV
transmission further accentuates an unsupported perception
that people living with HIV ‘intentionally’ and ‘recklessly’
transmit HIV to others. This feeds into the notion that
invisible, marginalised groups will now be even further
marginalised by having to undergo criminal prosecution,
due to their health status12. Thus, a human rights approach
based on informed consent, autonomy, confidentiality and
non-discrimination are increasingly threatened13, should
criminalisation of HIV transmission be legislated, as HIV
transmission will now be ‘curbed’ through policies, instead
of behavioural change.
Costing HIV criminalisation
Have we ever contemplated costing the impact
criminalising of HIV within a gender violence context
would have? Of course not, because if we did we could
not even be considering debating legislation around this.
The cost implication will not only be too massive, but also
continuous, as it can be calculated on two parts 1) human
costs and 2) legal costs.
The most important cost associated with
criminalisation of HIV will be that of human fatality –
taking into consideration that both gender violence and
gender-based violence will escalate out of proportion, due to
assumptions of people’s HIV statuses. Statistics may not be
readily available to reflect these cases, but health facilities
may see an increase in abuse cases. In most cases, death,
due to violence, may not be reported, as most people who
are abused do not seek medical assistance; for a variety of
reasons, including additional stigmatisation by the health
and police sectors.
In addition to the above, the judiciary will see an
increase in cases, particularly cases that involve rape,
domestic abuse, and gender violence, which requires
prosecution. The monetary value attached to this will
escalate, especially as some of these cases will be trialled
over years. Moreover, perpetrators may commit more
than one act of violence, thus increasing social violence.
…HIV transmission will now be
‘curbed’ through policies, instead of
behavioural change…
The second significant contributing factor will be the
monetary implication. The fact is that government and civil
society will have to spend extra money on reducing gender
violence, on campaigns promoting behavioural change, and
most importantly, on initiatives aimed to get people tested
for HIV. The current voluntary HIV testing approach will
not be an option for most people, as they will be too fearful
of stigmatisation, and would, thus, be reluctant to even be
tested for HIV and/or to access treatment.
Purpose of criminalisation of HIV in a gender
violence context
To whose benefit, or to what purpose, will
criminalisation of HIV transmission be? Is it a method of
32Implications of HIV criminalisation
ALQ September/November 2008
controlling the spread of HIV? I think not! It seems more
as if systemic institutions want to prescribe who
people should sexually engage with; how people should
be protecting themselves from HIV transmission; and
the importance of informing others of one’s HIV status.
However, money and time should rather be spent on
supplying people with unbiased information to make
informed choices around sexual practices and behaviours.
If these institutions are there to protect individuals’ rights,
then why should it be important for others to know whether
or not a person tested for HIV, and the test result? So, the
question remains to what, and to whose, benefit should
there be legislation criminalising HIV transmission –
and if there is none, countries that have implemented
HIV-specific legislations should be held responsible for
endorsing human rights violations.
…the gender and social inequalities…
shape people’s behaviours
and limit their choices…
Conclusion
Currently, South Africa does not have legislation
criminalising HIV transmission, but this does not exclude
the possibility that the future may become daunting if we
should. Thus, the criminalisation of HIV transmission will
not just change social attitudes increasing discrimination
and stigma, gender violence and human rights abuse;
it will also ensure that at the heart of stigma lies the fear
that people who are stigmatised should be seen as a threat
to society14. Consequently, the act of HIV criminalisation
has major consequences for people who are living with, or
who have been affected by, HIV. Criminalisation of HIV
transmission, as can be argued, will solely be responsible
for augmenting gender violence and guarantee that various
institutions violate basic human rights.
The question that should be continuously raised is who
will benefit from the criminalisation of HIV transmission?
Repealing basic human rights of privacy, non-disclosure
and equality can be seen as just another way of making the
invisible more invisible; and as negotiating people’s rights
without their permission. Is the criminalisation of HIV
transmission really what we want, what we need, or is this
something that just has no benefit for anybody?
Criminalisation of HIV transmission is, therefore, not
about ensuring that people’s rights are protected, but instead
about who holds the power to decide for others, who holds
the power to make decisions on behalf of marginalised and
vulnerable groups.
FOOTNOTES:
1. Cameron, E., Burris, S. & Clayton, M. 2008. ‘HIV is a virus, not a crime’. Paper
presented at the 17th International AIDS Conference, Mexico City, Mexico.
2. The Constitution of South Africa, Act 109 of 1996.
3. Pan American Health Organisation, PAHO. 2003. Understanding and
responding to HIV/AIDS-related stigma and discrimination in the health
sector. [http://www.paho.org/English/AD/FCH/AI/stigma.htm].
4. Section 9 of the Constitution.
5. Holland-Muter, S. 2007. ‘Sexual and reproductive health and rights of women
living with HIV: A long road to travel…’. In: ALQ, March 2007, pp1-8.
6. Cameron, E. 2008. ‘HIV is a virus, not a crime; Criminal statutes and crminal
prosecutions’. Paper presented at The 17th International AIDS Conference, Mexico
City, Mexico, August 2008.
7. Van der Schaff, G. 2007. ‘People need to know their HIV status, but…’. In:
ALQ, September 2007, pp17-23.
8. Cameron, E. 2008. ‘HIV is a virus, not a crime; Criminal statutes and crminal
prosecutions’. Paper presented at The 17th International AIDS Conference, Mexico
City, Mexico, August 2008.
9. Pan American Health Organisation, PAHO. 2003. Understanding and
responding to HIV/AIDS-related stigma and discrimination in the health sector.
[http://www.paho.org/English/AD/FCH/AI/stigma.htm].
10. Cameron, E., Burris, S. & Clayton, M. 2008. ‘HIV is a virus, not a crime’.
Paper presented at the 17th International AIDS Conference, Mexico City, Mexico
11. United Nations Population Fund. 2004. The gender dimensions of the
HIV/AIDS Epidemic. Population issues: Promoting gender equality: Gender and
HIV/AIDS. [http://www.unfpa.org/gender/aids.htm]
12. Ahmed, A. 2008. ‘The impact of criminalization of women and girls’. In:
Mujeres Adelante.
13. Kehler, J. 2008. ‘HIV testing practices’. Paper presented at the 2nd Wits HIV/
AIDS in the Workplace Research Symposium. Johannesburg, 29 – 30 May 2008.
14. Pan American Health Organisation, PAHO. 2003. Understanding and
responding to HIV/AIDS-related stigma and discrimination in the health sector.
[http://www.paho.org/English/AD/FCH/AI/stigma.htm].
Jameyah Armien is a Facilitator/Trainer at the
AIDS Legal Network (ALN). For more information
and/or comments, please contact her on
+27 21 447 8435 or at facilitator@aln.org.za.
33
Implications of HIV criminalisation
September/November 2008 ALQ
It is stigma that I believe lies behind the enactment
of these bad laws. Those laws seem attractive, but
they are not prevention or treatment friendly. They
are hostile to both. And this is simply because they
increase stigma. They add fuel to the fires of stigma.
[Edwin Cameron, 2008]
It is in the context of acknowledging that human rights
are to be at the centre of effective responses to HIV and
AIDS; legislative trends to criminalise HIV transmission;
and recognising a reality in which stigma, discrimination
and other violation of rights, based on a person’s sex,
gender, sexual orientation and/or HIV status, prevail –
that representatives from over 40 national, regional and
international human rights, gender and HIV organisations
came together in Cape Town on 27 and 28 November 2008 to
dialogue and discuss, in depth, various trends, implications
and realities of HIV criminalisation. The Roundtable
Discussion was hosted and convened by the AIDS Legal
Network (ALN), in partnership with SWEAT, the Triangle
Project, and Leadership South.
Contextual framework
Recent global, as well as regional legislative
trends indicate a strong call for criminalisation of HIV
transmission as one of the measures to respond to the
growing HIV and AIDS pandemics. While supporters
of ‘criminalisation’ reason that it is the only possible
response to halt the HIV pandemic, since individuals’
‘reckless’ behaviour need to be ‘criminalised’; opponents
to these legislative changes are united in that any form of
criminalising the transmission of HIV is a gross human
rights violation. Moreover, there is also the common
understanding that the criminalisation of HIV transmission
will further deter individuals from accessing HIV testing
services for fear of being ‘criminalised’; increase already
prevailing HIV-related stigma, discrimination and violation
of rights; and thus, heighten HIV risks and vulnerabilities,
particularly of already ‘vulnerable and marginalised
groups’ – women, especially positive women and young
women, as well as sex workers and lesbian women.2 Also,
calls for criminalisation of HIV transmission not only fail
to recognise that existing legislative provisions are in place
to prosecute ‘wilful’ transmission of HIV3, but also seem
to ignore the gendered implications of criminalising HIV
transmission4.
At the same time, there is a growing global advocacy
voice calling for the recognition that human rights are to be
at the centre of all responses to HIV and AIDS. An integral
component of the call for rights-based responses to the HIV
and AIDS pandemics is the principled understanding that
public health responses will only achieve their desired goals,
if they are based on human rights approaches. Responding
to growing global concerns about the implications of
criminalising HIV transmission, a document, introducing
10 reasons why criminalisation of HIV exposure and
transmission is bad public policy and threatens human
rights gains, has been released toward the end of 2008.5
It is within the paradigm of public health needs and
responses to the HIV and AIDS pandemics that human
rights are increasingly threatened, and legislative trends of
criminalising HIV transmission have flourished. Over the
past 5 years, 20 African countries, including Tanzania, Mali,
Kenya and Sierra Leone, have already adopted HIV-specific
legislation, while other countries, such as Uganda, Malawi
and Mozambique, are currently in the process of finalising
HIV-specific legislation. While legislative provisions
vary from country to country, common clauses include
restrictions on access to education and information for
children (in Guinea, for example, legislation prescribes
that children under the age of 13 years are not to have any
access to HIV and AIDS education); various conditions
of mandatory and/or compulsory HIV testing (such as
34Effects of criminalisation of HIV transmission
ALQ September/November 2008
Increasing the risk of human
rights abuses…
Effects of criminalisation of HIV transmission
Johanna Kehler
pre-marital HIV testing in Guinea); provisions legislating
HIV-disclosure and/or partner notification (in Mali, for
instance, the law places a legal duty to disclose a positive
HIV diagnosis to a spouse or regular sexual partner
within a period of six weeks after diagnosis); and the
criminalisation of HIV transmission (for example in
Kenya). There are also examples, such as the HIV-specific
legislation in Sierra Leone, which explicitly criminalises
mother-to-child transmission of HIV.6
Recognising these legislative trends in the region, it is
imperative to not only acknowledge that these legislative
responses are primarily driven by public health needs, but
also to critically assess and analyse the various human
rights implications inherent to legislative trends toward
criminalisation of HIV transmission. Moreover it is
crucial to clearly identify the extent to which HIV-specific
legislation, especially legislation criminalising HIV
transmission, impact particularly on women.
Human rights and gender implications
The following provides an overview of some of the
commonly raised human rights and gender implications
highlighted in current debates about HIV-specific laws –
many of which were also highlighted and affirmed during
the 2-day meeting.7
…address prevailing HIV-related stigma,
discrimination and other violation of
rights – instead of increasing the risk of
human rights abuses…
Based on the principled understanding that any form
of HIV criminalisation is a gross human rights violation,
participating organisations at the ‘Criminalisation
Roundtable Discussion’, including ARASA (AIDS Rights
Alliance of Southern Africa) and ICW (International
Community of Women living with HIV), felt very strongly
that these legislative trends will not only further deter
people from accessing HIV prevention, testing, treatment,
support and care services, due to fear of being criminalised,
but also increase HIV-related stigma and discrimination, as
people living with HIV, or are perceived to be at ‘high risk’
of HIV infection, will be further stigmatised as potential
‘criminals’ and a ‘threat’.8
In the context of access to HIV testing, prevailing
stigma, discrimination and other rights abuses, including the
lack of assured confidentiality, are commonly recognised
barriers – highlighted also by the continuing low uptake
in HIV testing. Many of the arguments made against
criminalising HIV transmission emphasise strongly that
the fear of an HIV positive diagnosis, and the potential of
a subsequent prosecution, will further deter people from
accessing services, including HIV prevention and testing
services.9 Legislative and policy measures providing for
mandatory HIV testing of pregnant women – a step often
accompanied by debates to introduce legislation that
criminalises HIV transmission – carry the risk that women
may decide not to access antenatal healthcare, out of fear of
being tested for HIV, as a positive HIV diagnosis may lead to
a woman being prosecuted for transmitting HIV to either her
child and/or sexual partner. Thus, women’s right to access
healthcare, including reproductive healthcare, will become
severely compromised with the introduction of legislation
that criminalises HIV transmission.
In the context of mandatory HIV testing of pregnant
women, the meeting expressed great concerns as to the
impact of mandatory HIV testing on the extent to which
healthcare services, especially antenatal services, will be
freely accessible. Considering already existing negative
implications, based on the understanding, that pregnant
women are to be tested for HIV, such as the risk of blame,
shame, violence, abuse and destitution as and when women
do test positive for HIV – the meeting felt strongly that
legislating mandatory HIV testing will further increase
women’s risks.
It is also fair to assume that criminalising HIV
transmission will undermine HIV prevention efforts, as
a person accessing HIV prevention measures could be
perceived to be living with HIV and thus, could be seen
as a potential ‘criminal’. Moreover, HIV criminalisation
will further limit access to prevention of mother-to-child
transmission of HIV programmes, as women are easily
identifiable as living with HIV, when participating in
PMTCT programmes. And finally, criminalising HIV
transmission will severely impact, and ultimately
compromise, especially a positive woman’s right to freely
35
Effects of criminalisation of HIV transmission
September/November 2008 ALQ
decide whether or not to have children, as there will the
risk of being prosecuted for infecting, and/or exposing her
child, and/or partner, to HIV.
…creates a perception that
‘safer sex practices’ could potentially
be enforced by the law…
Criminalisation acts increase stigma for women
living with HIV and AIDS by blaming women for
transmission of HIV, especially in the context of
mother to foetus transmission. This serves to entrench
the stigma against women as the vectors and
transmitters of the epidemic, justifying violence
against HIV-positive women, their expulsion from
their homes, and denial of their right to inherit
property.10
Acknowledging women’s specific risks and
vulnerabilities in the context of HIV and AIDS, the two-day
meeting also affirmed that legislative trends towards HIV
criminalisation will, in its application, criminalise mostly
women – as women are often ‘the first to know’ of their
positive HIV status, and thus, women are more likely to be
prosecuted. Subsequently, legislation – often introduced
as a means ‘to protect women’ – will lead to the arrest
and prosecution of women for infecting their partners and
children with HIV.
It is commonly recognised that one of the underlying
factors defining women’s greater risks and vulnerability
to HIV transmission is the patriarchal system placing
women in a position of lesser power to make informed
choices, including sexual choices. Thus, women are least
in the position to negotiate conditions of sex, as well as to
negotiate condom use. Yet, women, with the introduction of
HIV-specific laws, will be liable for prosecution for ‘wilful’
transmission of HIV.
The laws do not take into account existing social,
economic or other existing inequalities or injustices
in our societies. Therefore those most needing the
protection of the law are in fact in most danger of
having their human rights further eroded by
these laws.11
Not enough has been done to address the violence,
inequality and human rights abuses that drive the
epidemic – in other words, not enough has been done
to address the real legal challenges.12
Similarly, gender violence is widely recognised to be as
much a cause as a consequence of HIV infection. Research
findings13 indicate that young HIV infected women are ten
times more likely to have experienced violence, than women
who are not infected with HIV. The fear of violence is an
often cited barrier – especially for women – to disclosing
their HIV positive status. Criminalising HIV transmission
is likely to lead to more incidences of HIV-related violence,
as the law prescribes people living with HIV as potential
‘criminals’.
HIV criminalisation may also potentially reverse some
of the gains made in relation to sexual and reproductive
health and rights, such as the right to make informed
sexual and reproductive choices. In countries, such as
Namibia, a country where there is no existing or proposed
legislation criminalising HIV transmission in place, HIV
infected women are coerced and forced into sterilisation –
solely based on the ground of an HIV positive diagnosis,
while many HIV infected women are, all over the region,
subjected to coercive and forced ‘abortions’.14 These are
only two of the many examples clearly indicating the extent
to which women living with HIV are already ‘criminalised’
– irrespective of whether or not HIV-specific laws are in
place. With the introduction of HIV criminalisation into
the statutes, women’s and especially positive women’s,
sexual and reproductive rights, including sexual and
reproductive health rights, will be further limited, violated,
and subsequently denied.
A similar argument can be made with regard to human
rights gains in the response to HIV and AIDS. Achieved
rights-based responses to HIV, such as access to HIV
testing services, protecting the right to autonomy, informed
choice, confidentiality and non-discrimination, as well as
the right of access to HIV treatment, support and care, are
severely compromised and threatened by legislative trends
to criminalise HIV transmission.
This not only violates the most basic rights of people
living with HIV, it also threatens public health, by
making it dangerous for anyone to seek information
about HIV prevention or treatment.15
36Effects of criminalisation of HIV transmission
ALQ September/November 2008
Concluding remarks
So, while an argument could be made that these
legislative trends are founded in ‘good intentions’ to halt
the spread of HIV, the outcome, HIV-specific laws, are ‘bad
policy’ – reversing the progress made, as limited as it may
be, in responding to HIV and AIDS realities and challenges
from a human rights perspective. Furthermore, opponents
to HIV criminalisation are united in the recognition that
‘change in sexual behaviour’ – which is key to reducing the
risk of HIV transmission – cannot be legislated, and adopting
HIV-specific legislation that criminalises HIV transmission
is not only an approach to the pandemic that violates, by
its very definition, fundamental rights and freedoms of
people infected with, and affected by HIV and AIDS, but
also misleading, in that it creates a perception that ‘safer sex
practices’ could potentially be enforced by the law.
…achieved rights-based responses…
are severely compromised
and threatened…
Highlighting 10 reasons, why criminalisation is ‘bad
policy’, Judge Cameron states that:
…criminal prosecutions are a misguided substitute
for measures that really protect those at risk of
contracting HIV.16
Hence, efforts to halt the spread of HIV and to reduce
especially women’s risks and vulnerabilities to HIV
infection are to focus on removing barriers to HIV
prevention, testing, treatment, care and support – instead
of creating additional barriers further deterring people
from accessing much needed services and information; on
effectively addressing the underlying factors of the HIV
and AIDS pandemics, such as the patriarchal paradigm
fostering women’s lesser power to negotiate conditions of
sex, and thus, enabling and perpetuating women’s greater
risk and vulnerabilities; and to effectively address prevailing
HIV-related stigma, discrimination and other violation
of rights – instead of increasing the risk of human rights
abuses, through ‘legalising’ criminalisation of
HIV transmission and, in so doing, ‘legalising’ the
criminalisation of people living with HIV.
FOOTNOTES:
1. This contribution is based on the Roundtable Discussion, ‘Criminalisation:
Obstacle or key to effective HIV and AIDS response?’, held on 27 – 28 November
2008 in Cape Town, South Africa. A full copy of the report can be accessed from
the AIDS Legal Network (ALN). [www.aln.org.za]
2. See, for example, Eba, P. 2008. ‘HIV specific legislation in Africa: Are human
rights concerns addressed?’. AIDS and Human Rights Research Unit, Centre
for Human Rights & Centre for the Study of AIDS, University of Pretoria;
Cameron, E. Burris, S. & Clayton, M. 2008. ‘HIV is a virus, not a crime’. Paper
presented at the 17th International AIDS Conference, Mexico City, Mexico;
and IPPF, GNP+ & ICW. 2008. HIV: Verdict on a virus – Public health, human
rights and criminal law.
[http//:unaids.org/en/knowledgeCentre/Resources/Feature_Stories/archive/2008/
20081114_verdict_on_virus_IPPF.asp].
3. Open Society Institute. 2008. 10 Reasons to Oppose the Criminalisation of HIV
Exposure or Transmission. [http://www.soros.org/health/10 reason].
4. See, for example, Clayton, M. 2008. ‘Criminalising HIV transmission: Is
this what women really need?’. Paper presented at the 17th International AIDS
Conference, Mexico City, Mexico; and Welbourn, A. 2008. HIV/AIDS a war on
women. Open Democracy.
[http//:www.opendemocrcy.net/article/5050/international_womens_day/hiv_aids].
5. Open Society Institute. 2008. 10 Reasons to Oppose the Criminalisation of HIV
Exposure or Transmission. [http://www.soros.org/health/10 reason].
6. See also, for example, Ngonyama, L. 2008. ‘Criminalisation of HIV
Transmission: Legislative trends and implications’. Paper presented at the
Criminalisation Roundtable Discussion, 27 – 28 November 2008, Cape Town.
7. See, for example, Open Society Institute. 2008. 10 Reasons to Oppose the
Criminalisation of HIV Exposure or Transmission.[http://www.soros.org/
health/10 reason]; and IPPF, GNP+ & ICW. 2008. HIV: Verdict on a virus – Public
health, human rights and criminal law.
[http//:unaids.org/en/knowledgeCentre/Resources/Feature_Stories/archive/2008
/20081114_verdict_on_virus_IPPF.asp].
8. See, for example, Ngonyama, L. 2008. ‘Criminalisation of HIV Transmission:
Legislative trends and implication’. Paper presented at the Criminalisation
Roundtable Discussion, 27 – 28 Nov 2008, Cape Town; and Madlala, R. 2008.
‘Criminalisation of HIV transmission and implications for women’. Paper
presented at the Criminalisation Roundtable Discussion, 27 – 28 November 2008,
Cape Town.
9. See, for example, IPPF, GNP+ & ICW. 2008. HIV: Verdict on a virus – Public
health, human rights and criminal law.
[http//:unaids.org/en/knowledgeCentre/Resources/Feature_Stories/archive/2008
/20081114_verdict_on_virus_IPPF.asp].
10. Tzili Mor, Georgetown University Law Centre, and Aziza Ahmed, ICW, USA,
2008. As quoted in IPPF et al. 2008, p18.
11. Alice Welbourn, ICW, UK, 2008. As quoted in IPPF et al. 2008, p31.
12. Richard Pearshouse, Canadian HIV/AIDS Legal Network, 2008. As quoted
in IPPF et al. 2008, p31.
13. See [http://www.unfpa.org/gender/docs/fact_sheets/gender_hiv.doc]
14. See, for example, Gatsi, J. 2008. ‘Criminalisation of positive women: The
Namibian experience’. Paper presented at the Criminalisation Roundtable
Discussion, 27 – 28 November 2008, Cape Town; and Tjaronda, W. 2008.
‘Namibia: women robbed of motherhood’.
[http://allafrica.com/stories/200802120307.html].
15. Rebecca Schleifer, Human Rights Watch, 2008. As quoted in IPPF et al.
2008, p15.
16. IPPF, GNP+ & ICW. 2008. IPPF, GNP+ & ICW. 2008. HIV: Verdict on a virus
– Public health, human rights and criminal law. pp36-37.
[http//:unaids.org/en/knowledgeCentre/Resources/Feature_Stories/archive/2008/
20081114_verdict_on_virus_IPPF.asp].
Johanna Kehler is the National Executive Director
of the AIDS Legal Network (ALN).
For further information and/or comments,
please contact her on +27 21 447 8435
or at jkaln@mweb.co.za.
37
Effects of criminalisation of HIV transmission
September/November 2008 ALQ
The only way you will empower me is if we sit at the
table together and share our power.
[MariJo Vazquez]2
Clear calls for women’s full participation in the AIDS
response have been made at, and even before, the 1994 Paris
AIDS Summit, whose Declaration pledged to
…support initiatives to reduce the vulnerability of
women to HIV/AIDS by encouraging national and
international efforts, aimed at the empowerment
of women…by ensuring their participation in all
the decision-making and implementation processes
which concern them; and by establishing linkages
and strengthening the networks that promote women’s
rights.
These calls have been repeated time and again, not
only by the United Nations General Assembly in the 2001
Declaration of Commitment on HIV/AIDS, but also in
numerous civil society statements and declarations, such
as the 1992 Twelve Statements of ICW, the 2002 Barcelona
Bill of Rights, the 2005 Compact to End HIV/AIDS, the
2006 Johannesburg Position on HIV/AIDS and Women’s
and Girls’ Rights in Africa, the 2006 Panama Declaration,
the 2006 Blueprint for Action on Women and Girls and
HIV/AIDS, the Nairobi 2007 Call to Action and the 2008
Women Demand Action and Accountability Now statement.
Yet, despite the increased attention to, and resources
allocated for HIV and AIDS, as well as heightened debate
around the ‘feminisation’ of the epidemic, women’s full
participation in the AIDS response has still not been
realised. As the Honourable Charity Ngilu, former Kenyan
Minister of Health, stated at the 2007 International Women’s
Summit:
My dear sisters, where policies are being made, our
faces are not at those tables.3
This is particularly true for the women, who are the
most affected by the epidemic, as for too long HIV-positive
women are invited only after agendas have been set, or policy
decisions have been taken. HIV-positive women leaders
from Latin America have, therefore, boldly embraced the
position of ‘nothing for us without us’.
Obtaining information on who is participating where
in the AIDS response at the national, regional or global
level is a frustrating endeavour of stitching together data
sources and asking individual questions of key informants.
There is no consistent monitoring of involvement by key
stakeholders in the formal and informal AIDS response, and
the deeper question of meaningful participation by people
most impacted by the epidemic is even more difficult to
assess.
However, after an extensive review of existing
documentation and lengthy in-depth interviews with key
stakeholders in Southern Africa, South Asia, Southeast
Asia, Latin America and elsewhere, the evidence is clear.
Although women are on the frontlines leading innovative
initiatives that are central to the success of the AIDS
response – as community-based caregivers, women’s rights
advocates and so on – they are not yet full participants in
all levels of the response. For example, too few women
have a seat on powerful mechanisms, such as the National
AIDS Coordinating Authority or the Country Coordinating
Mechanism of the Global Fund to Fight AIDS, Tuberculosis
38Participation is seen as a
privilege, not a
right…
ALQ September/November 2008
Participation is seen as a
privilege, not a right…
Women Leaders Speak1
and Malaria. According to October 2008 data from the
Secretariat of the Global Fund to Fight AIDS, Tuberculosis
and Malaria, women’s participation on the Country
Coordinating Mechanisms hovers at a 32% average4.
Women’s participation does not necessarily imply the
participation by, or representation of networks of women
living with HIV, women’s rights organisations or grassroots
women’s groups. So, even when gender parity is met, critical
stakeholder involvement may not be.
…why is so much of women’s
involvement invisible?…
At the opening of the International Women’s Summit
in Nairobi, Kenya in July 2007, Dr. Musimbi Kanyoro,
speaking as the then World YWCA General Secretary, said
that ‘the leadership of positive women is not negotiable’. If
women are leading the response in important ways, and, if
calls for women’s full participation in the AIDS response
have been made for over 15 years, why is so much of
women’s involvement invisible? And why are women,
particularly the most affected women, still absent from
formal and informal decision-making forums?
Positive women bring a unique experience, inside
knowledge and a drive to survive. Positive women need
to be involved. Even though the rhetoric is changing,
where is this happening?5
Situational Analysis
First, we need to raise awareness on human rights,
and also create an environment where women can
come and talk freely and openly about their needs and
rights. At the same time, we need to set up a policy that
supports the involvement and participation of women.
Also, we need to sensitize policymakers about the issue
of women. [Mony Pen]6
Even as women actively strive to lead, or even
participate in civil society or governmental structures,
significant barriers limit their capacity and reach. Central
among these are the responsibilities women shoulder
in their homes, as illustrated by the following quotes of
women leaders:
39
Participation is seen as a privilege, not a right…
September/November 2008 ALQ
1) R ecognise affected women, such as HIV-positive women,
home-based caregivers and young women, as key
stakeholders in the AIDS response, through creating formal
places for real participation and leadership in decision-making
bodies, as these mechanisms are places of power.
2) Ensure democratic processes for selecting civil society
representation and enable true representation, through
providing support for consultation and collaboration.
3) Ensure that national plans and programmes on HIV and
AIDS prioritise women’s needs and priorities as identified
by women through consultation and engagement.
4) Invest in organisations and initiatives led by and with
HIV-positive women.
5) Invest in developing a new cadre of women leaders,
particularly HIV-positive women, at local and national
levels.
6) Simplify funding mechanisms, so as to facilitate greater
access to resources by women’s organisations, especially
community-based women’s organisations, and target
resources to these organisations.
7) Support programmes that address the immediate needs
of women, including increased access to HIV prevention,
treatment, care and support services.
8) Prioritise gender expertise in all aspects of the AIDS
response, including in formal decision-making bodies
and funding mechanisms.
9) Increase women’s awareness and understanding of
human rights, including the right to full and meaningful
participation.
10) Promote the participation, empowerment and leadership
of women at all levels of society.
*These recommendations build on those developed by the Huairou
Commission, ICW, VSO and the World YWCA, among others, as well as from
the numerous calls to action and statements developed by civil society on
this topic. Number 10 is taken specifically from the 2007 Nairobi Call to Action.
Achieving the Power of Participation: Recommendations*
In households that are affected, everything is blamed
on the women.7
At the household level, I think the main problem is that
as much as men say they are breadwinners, women
are the backbone. The housework is done by women
and they are unable to do their own things. They have
too much work.8
I think many of the challenges women in the U.S.
face are probably quite similar to women around the
world. According to the Kaiser Family Foundation
July 2007 report, 76 per cent of HIV-positive women
have children under 18 to take care of, many are heads
of households and must work to support the family,
living in poverty (64 per cent of HIV-positive women
in the U.S. have incomes under $10,000 compared
with 41 per cent of HIV-positive men) with limited
transportation available and are faced with intense
stigma in deciding whether or not to step forward.9
Similarly, the care giving role that many women
undertake in the context of HIV and AIDS is not sufficiently
recognised as a core component of the response:
…Until we get away from the concept that ‘women’s
work’ is voluntary or unpaid while men require
payment, we will not enable a meaningful involvement
of the people most disproportionately affected who
also have the least resources.10
Compounding the barriers raised by women’s socially
defined roles are the barriers women face when attempting
to engage with the AIDS movement as a whole:
The movement of HIV-positive women emerged in
a male-controlled context. In the beginning of the
pandemic, and even until now in some regions of the
world, AIDS activism is dominated by men. Sometimes
these leaders have formed elites, and it is very difficult
for women to be part of the decision-making levels.
The first battle for gender equality has been inside the
AIDS movement.11
…the heterogeneity of women’s lived
experience is frequently overlooked and
the critical alliances across movements
do consistently exist…
There is an AIDS power structure in the U.S. that
does not include many women. Many men in policy
and advocacy work have been doing AIDS work since
the epidemic hit gay men over 20 years ago. They
are skilled and well versed on how to gain entry into
decision-making arenas. Many women do not have
the experience, confidence and technology literacy to
gain access to this arena.12
Even when, for example, HIV-positive women are
40Participation is seen as a
privilege, not a
right…
ALQ September/November 2008
Building Young Women’s Leadership
in Namibia
The Namibia Women’s Health Network is the first
network of HIV positive women, founded with a
majority of young women, in Namibia. The Namibia
Women’s Health Network builds upon the alliances
forged through the Parliamentarian for Women’s
Health project with policy makers (Members of
Parliament sitting in the Parliamentary Standing
Committee on Human Resources, Social and
Community Development), with civil society and
community-based organisations, faith-based entities,
and the private sector. The Ministry of Health and
Social Services, Ministry of Gender Equality and
Child Welfare, SADC Parliamentary Forum, and the
UN family in Namibia are also key allies. Because of
the Young Women’s Dialogue led by ICW in Namibia
to mobilise and create space for HIV positive young
women, one of the young women participants
has been nominated by the National Council at
Parliament to sit in the HIV and AIDS committee of
the National Council.
invited to a meeting or hold a seat in a decision-making
forum:
The main challenge to participation and leadership in
the response to HIV/AIDS at the social level is that
besides taking care of our daily tasks, we have to go
over the social structures set up by people who hold
on to knowledge and who exercise power. They build
their own interest groups, and in order to participate
we need to raise awareness and win their trust. We
participate but we do so in a situation of inequity,
implementing first the actions that other people, with
their own interests, decide for us.13
…the space afforded HIV-positive
women in the AIDS movement has been
contested…
Rarely, if ever, do those creating the policy, holding the
meeting, developing the programme, ask: what are your
priorities? Where do you think we should start? What
are the biggest challenges facing you at home?14
Lastly, even within the community of women advocates,
researchers and decision-makers, the heterogeneity of
women’s lived experience is frequently overlooked and
the critical alliances across movements do not consistently
exist. For example, sex worker leaders commented after the
2006 International AIDS Conference that it was the first
time they had been included in women’s rights sessions.
Despite the violence faced by lesbian women, in South
Africa for example, in the context of HIV and AIDS, this
issue is not consistently on the women and HIV agenda.
Women who use drugs struggle to add a gender perspective
to harm reduction, and their particular concerns are too
frequently overlooked as well. The manner in which young
women struggle to have a voice and be recognised in the
women’s sector is one more case in point. Further,
…it has been rare for women’s organizations to
stand by positive women’s organizations…hard to get
support by the women’s movement.15
These are only a few ways in which, even across
overlapping and related movements, there are stronger
alliances to be built and critical gaps to fill.
Challenges across continents
The challenges women face in order to participate, both
in formal and informal structures in the AIDS response,
are consistent across continents, even if variable in degree.
Women’s responsibilities within their homes limit their
ability to travel for extended lengths of time to meetings
or trainings. The space afforded HIV-positive women in
the AIDS movement has been contested. A key informant
from the National Movement of Positive Women Citizens
in Brazil noted:
We still have many spaces to conquer. Recognition
that we need to have specific spaces because we have
specific requirements is still not a matter of consensus
inside the AIDS movement.16
Investment in building the strategic capacity of most
affected women has been inconsistent. Projects and
programmes to address women in the context of HIV and
AIDS are too frequently focused on women as objects of
services, not as agents of change.
They give us money but do not include us. They do not
ask us what the issue is…I’m not sure they will support
us long term. For women to be empowered, they need
long-term support from donors.17
Resources are donor-driven, and as such, organisational
structures can lack attention to gender dynamics.
We are doing work supporting most at risk women, but
programme staff for this are mostly men. It’s similar
to other organizations, both non-governmental and
governmental…At high levels, there are more male
staff than female; at grassroots levels, there are more
women. It can appear as: Men are thinkers, decision
makers, and women are doers.18
41
Participation is seen as a privilege, not a right…
September/November 2008 ALQ
Broader alliances between the women’s rights movement
and the HIV-positive women’s movement have been slow
to form. Women, particularly those most affected by HIV
and AIDS, have had to struggle constantly for a voice in
agenda-setting and policy-making. Transparent entry points
frequently do not exist.
We need the voice of women at the table, especially
women living with HIV. But how do we do that? How
do we get involved, say, at NIH [National Institutes
of Health]?…No one answers me. I plan to go to
[Washington] DC in April to speak to people about
this – but how do I get involved and who do I speak
to?19
The pace of communication and decision-making at the
global level far outstrips the ability of women with limited
Internet access, or ability to converse easily in English, to
keep up. Structural barriers go hand in hand with broader
policy and practice that are not inclusive. HIV-positive
women or their networks are invited late to meetings,
after agendas are set, or into processes after guidance or
policy has been formulated. Thus, positive women are
constantly placed in the role of reaction, disappointment
and complaint, rather than in a position of proactive,
constructive and creative contribution. Similarly, women
are invited to speak to ‘women’s issues’ only, and not to
address the broader policy directives under consideration.
Participation is seen as a privilege, rather than as a right,
or as meaningful, sustained engagement.
…structural barriers go hand in hand
with broader policy and practice that are
not inclusive…
Roadmap for Action
So what is the roadmap for realising the meaningful
involvement of women in all aspects of the AIDS response
and for them to have full power of participation?
We will never see a reduction in new infections and
deaths without investing in the strategic capacity of
the most directly affected, HIV-positive women.20
Advancing women’s leadership and participation in
the AIDS response requires concrete steps to address the
obstacles they face, as well as longer term commitments to
leadership development, training and resource allocation.
One [strategy] is to understand the need for affirmative
action to ensure there are always two places at the table
for persons living with HIV, one woman and one man.
Many of the major organizations do not understand
the need for women to be represented by themselves,
but issues for women are often very different from
those addressed by other constituencies…Secondly, we
must ensure resources are put in the hands of positive
42Participation is seen as a
privilege, not a
right…
ALQ September/November 2008
Mobilising Communities for
Change in Uganda
Mobilising Communities for Change in Uganda
The Ugandan Mama’s Club is a peer education,
advocacy, and information resource for young HIV
positive mothers to gain psycho-social support,
knowledge, and training at the intersection of
sexual and reproductive rights and health and HIV.
Organised by, and comprised of, women living with
HIV, the Mama’s Club is a model for communitybased
support, mobilisation, and change that can
work to ensure the health and welfare of HIV positive
women, their families, and their communities. The
Mama’s Club has carried forward three key priorities
to date: 1) male involvement in PMTCT programs
(the prevention of perinatal transmission); 2) strides
to positive parenthood; and 3) protect and support
young mothers. The Mama’s Club is a 2008 Red
Ribbon Award recipient.
Through mobilising young mothers who are living
with HIV, the Mama’s Club has created an engine for
advancing sexual and reproductive health and rights,
as well as for facilitating local women’s participation
in the AIDS response.
women’s networks and the vast army of women who
provide the majority of treatment, care and support
services without material support.21
…placed in the role of reaction,
disappointment and complaint,
rather than in a position of proactive
constructive and creative contribution…
1) Monitor the ’full and active participation of people
living with HIV, vulnerable groups, most affected
communities’22 in the response, particularly as it pertains
to women living with, and affected by HIV.
2) Collect sex and age disaggregated data on participation
and implement an assessment of the extent to which
women’s participation is indeed meaningful and a part
of leadership, to better guide policy development and
resource allocation.
3) Develop definitions of, and standards for meaningful
participation, through consultation with women,
most importantly with HIV-positive women and their
networks.
4) Strengthen the capacity of affected women, particularly
HIV-positive women, to participate fully in the HIV and
AIDS response, through leadership training, sustained
technical support and mentorship.
5) Document and disseminate successful strategies and
innovative initiatives to strengthen and promote the
leadership and participation of HIV-positive women.
6) Identify strategic areas for advocacy and influence,
such as increasing the participation of HIV-positive
women and women’s rights organisations in Country
Coordinating Mechanisms of the Global Fund to Fight
AIDS, Tuberculosis and Malaria.
FOOTNOTES:
1. This contribution is an excerpt from a Review of Women’s Leadership
and Participation in the AIDS Response by UNIFEM and the ATHENA
Network; and has been drawn from an extensive year long global review
of women’s leadership and participation in the AIDS response.
2. MariJo is the past Chair of the International Community of Women
Living with HIV/AIDS (ICW) and Chair of the ATHENA Network.
3. Speech at the International Women’s Summit: Women’s Leadership on
HIV and AIDS, Nairobi, Kenya, July 2007.
4. Data received by email, October 2008.
5. Beri Hull, International Community of Women Living with HIV/AIDS
(ICW), Interviewed 6 February 2008.
6. Mony Pen, Cambodian Community Network of Women Living with
HIV/AIDS, Interviewed by ICRW and CEDPA 4 February 2008.
7. Asha Juma, Kenya, Interviewed by ICRW and CEDPA
1 February 2008.
8. Ignatia Jwara, Gender AIDS Forum, Interviewed by ICRW and CEPA
6 February 2008.
9. Maura Riordan, WORLD, Personal communication
11 February 2008.
10. Lynde Francis, The Centre, Personal communication April 2008.
11. Violeta Ross, ‘A Bridge Needs Two Sides’, presented at the Global
Round Table, Countdown 2015 Sexual and Reproductive Rights for All,
London, 2004.
12. Maura Riordan, WORLD, Personal communication
11 February 2008.
13. ICW Brazil, Personal communication 18 February 2008.
14. Luisa Orza and Jennifer Gatsi Mallet, ‘Thinking Positive’,
30 November 2007, Open Democracy,
[http://www.opendemocracy.net/article/5050/16_days/hiv_aids_namibia].
15. Undisclosed informant, Interviewed 15 February 2008.
16. Alessandra Nilo, ‘Case Study of Women’s Leadership and Participation
in the AIDS Response in Brazil’ from full review.
17. Mony Pen, Cambodian Community Network of Women Living with
HIV/AIDS, Interviewed by ICRW and CEDPA 4 February 2008.
18. Hoang Thi-Le An, Vietnam, Interviewed by ICRW and CEDPA
31 January 2008.
19. Shannon Behning, Women’s Lighthouse Project, Interviewed by
ICRW and CEDPA 5 February 2008.
20. Terry McGovern, Ford Foundation, Interviewed 18 March 2008.
21. Lynde Francis, The Centre, Personal communication April 2008.
22. United Nations General Assembly, ‘Declaration of Commitment on
HIV/AIDS’, A/RES/S-26/2, 27 June 2001,
[http://www.un.org/ga/aids/docs/aress262.pdf].
Tyler Crone is the Coordinating Director at
the ATHENA Network. For further information
and/or comments, please contact her at
tyler.crone@gmail.com.
43
Participation is seen as a privilege, not a right…
September/November 2008 ALQ
One of the purposes of the meetings was to explore the
challenges, experiences, lessons learned at a community/
district level, as this is seen to be a key element in
identifying the remaining gaps in the implementation
of the NSP; but also to engage with civil society’s role
in the implementation of the NSP; as well as to examine
community’s level of awareness of the NSP and its desired
goals, targets and interventions. Another purpose was to
collectively identify remaining gaps and develop advocacy
strategies to further enhance civil society’s role and
responsibility in the implementation of the national strategic
plan at a community/district level.
Meetings were conducted in the following provinces:
North West (08 May 2008), Free State (28 May 2008),
Western Cape (05 June 2008), Eastern Cape (30 June
2008), KwaZulu Natal (28 August 2008), Northern Cape
(03 September 2008) and Mpumalanga (03 October
2008). The various civil society sectors participating at the
meetings, included home-based care; human rights
advice offices, LGBTI, youth, gender violence, victim
empowerment, orphans and vulnerable children,
community members, traditional healers/leaders, sexual and
reproductive health and rights, VCT counsellors, and the
treatment sector. In some provinces representatives of
Provincial and District AIDS Councils attended, while in
others some of the Chapter 9 institutions participated in the
meetings. In one of the provinces, one of the departments
heard about the meeting and used the opportunity to respond
to many of the questions raised around the implementation
of particular interventions.
One of the guiding principles for the implementation of
the NSP, namely effective partnerships, highlights that:
…all sectors of government and all stakeholders of
civil society shall be involved in the AIDS response.
One could argue that ideally all stakeholders and civil
society shall be involved in the HIV and AIDS response.
Ideally, stakeholders who are involved, outnumber those
not involved in the implementation of the NSP; as ideally
most communities are involved in the implementation
of the NSP. But that is only the ideal. The reality, from
what one could gather from the meetings, is that there is
minimal involvement by civil society and community in the
implementation of the NSP.
Fewer than 5% of social and networking partners and
community members, participating in the meetings, had
knowledge of the NSP. Also, fewer than 5% had ever
attended a meeting on the NSP, or the Provincial Strategic
Plan (PSP), or the District Strategic Plan (DSP). This, most
certainly, raises the question as to the extent to which the
guiding principle of ‘effective partnerships’, and the
involvement of all of civil society is applied. As one
participant pointed out:
…It is one thing to know what the NSP is promising,
but quite another to engage with government officials
who are not forthcoming with information around
accessing funds for programmes, and when meetings
are going to be held and such.
However, it is important to recognise that civil society
organisations are, in fact, involved in implementing
programmes and interventions of the NSP – through
their own programmes and initiatives – many without
being acknowledged by, or receiving funding from,
the government. On the question as to what changes
partners observed pre-NSP and now fourteen months
into the NSP, partners indicated, amongst others, that
HIV information ‘is now more free flowing’ and that
messages have changed ‘somehow’; that more people
are treatment literate; and more and more people are
seen testing for HIV.
However, concerns were also raised about things that,
44Provincial feedback on the implementation of the NSP
ALQ September/November 2008
The NSP remains a document for a few…
Provincial feedback on the implementation of the NSP
The first round of provincial networking meetings facilitated by the
AIDS Legal Network (ALN) in 2008, focussed on the implementation of
the HIV and AIDS & STI National Strategic Plan, 2007 – 2011 (NSP).
Gahsiena van der Schaff
according to partners, should change but where no change has
been observed and/or experienced as yet, including that:
• Rural areas remain largely excluded from funding
and initiatives
• Legal literacy is still missing
• Healthcare workers are still as ‘invisible’ in some
communities as before
• Lack of transparency is still a major concern
• Representatives of AIDS Councils are largely
unknown to civil society and community
• Accessing information from municipalities remain
a huge challenge
• NGOs remain fragmented and are still ‘fighting
over resources’ (e.g., HBCs receiving stipends and
those who do not)
…identified ‘solutions and strategies’ to
further the implementation of the NSP
may be as ‘ambitious’, as some of the
identified NSP interventions themselves…
One partner raised the issue of lack of access to
follow-up support after people have tested for HIV, pointing
out that organisations run campaigns to encourage people to
test, but put nothing in place for ‘after-care’.
…no one cares what happens to me after I have tested.
All they are concerned about is to report the number of
people who have tested in that campaign.
Furthermore, some of the participating organisations
disagreed with the view that changes happening in
the communities should be ascribed to government
implementing the NSP, but rather due to the hard work of
NGOs, who ‘go the extra mile’.
In all the meetings, questions were posed as to the ‘lead
agents’, who are responsible for the implementation of
particular interventions and programmes.
The NSP outlines requirements for effective
implementation of the NSP1, stating that:
…It is recommended that Provinces duplicate
appropriate national structures, such as SANAC, at
provincial and local level. It is particularly important
to establish appropriate structures at district level
and it is recommended that District HIV and AIDS
Committees be established. These district structures
should include all role players within communities.
Local government structures should mainstream
HIV and AIDS, TB and STI activities to harmonise
with local integrated development plans: issues such
as access to transport and poverty alleviation are
integral to HIV programmes.
Yet, the majority of participants at the meetings
expressed a common sentiment, best highlighted with the
following statements: ‘We do not know of the existence of
either the PAC or LAC – who they are, is a mystery!’, and
‘No meeting was called where we were present and where
the PSP or LSP was discussed!’.
The guiding principle on financial sustainability
states that:
…No credible, evidence-based, costed HIV and AIDS
and STI sector plan should go unfunded. There should
be predictable and sustainable financial resources for
the implementation of all interventions. Additional
resources from development partners shall be
harmonised to align with policies, priorities and fund
programme and financial gaps.
Yet, one of the challenges mentioned by the majority of
partners throughout the provinces is the lack of financial
resources to implement interventions and programmes
relevant to their work. The NSP also confirms that clear
and effective communication is an essential tool for the
attainment of the aims of the plan. However, few of the
well-established civil society organisations are informed of
calls for funding; or of meetings of District AIDS Councils
– which is of great concern.
The NSP also states that2:
…More can still be done by civil society to improve
the manner in which they are organised for better
efficiency.
During the meetings, several provinces admitted to ‘being
fragmented’; ‘not organised’; and ‘fighting over resources’
– thus, indicating that there remains plenty of room for civil
society to improve their level of efficiency.
Another concern is that for the attainment of the aims of
the NSP, ‘Individuals and communities need to take charge’3
The apparent lack of ‘clear and ongoing’ communication
does, however, raise the question as to how civil society,
individuals, and communities would, in fact, know that they
45
Provincial feedback on the implementation of the NSP
September/November 2008 ALQ
are to not only ‘take charge’, but also to, more importantly,
participate – if to benefit from intended interventions and
programmes. The responsibility of all is to make sure
that communication is ongoing and clear, and that all are
involved, as highlighted in some of the strategies identified
during the meetings.
…It is important to take the process forward- raising
awareness about the NSP in the communities, making
sure implementation is taking place and that everyone
understands their responsibility in implementing
interventions and programmes, and to start a process
of engagement between government and civil society.
Overview of challenges
The NSP remains a document for a few, with little or no
benefit to the people who are meant to benefit. Achieving
the goals of the NSP is a national responsibility – a
responsibility of all. Yet, very few have knowledge of
the document, its content and implications, and thus,
limited understanding of the responsibility. Effective
partnerships cannot be achieved with the exclusion of civil
society. Similarly, individual representation and/or single
organisational representation at provincial or local AIDS
Council level does not constitute ‘partnership’ with civil
society, as no single organisation can claim to represent
all of civil society. And while this may highlight the
challenges within civil society itself, it may also point to
the ineffectiveness of provincial/district/local AIDS council
structures engaging with individuals and/or individual
organisations, which do not necessarily have a mandate to
be on these structures.
There is also the continuous challenge of lack of access
to information, as well as the challenge of ‘representing’ the
realities, concerns and needs of especially rural communities.
Rural communities are often solely reliant on information
dissemination and messaging from lovelife (who speaks
primarily to young people, and remains a ‘feeder’ of moral,
instead of factual information), and from Khomanani (who
does largely the same). Moreover, there is also the concern that
very little human rights education is happening in rural areas.
The question of violations being reported to advice
offices was also commonly raised. Yet, the advice offices
often fail to educate people about their rights, especially the
meaning of rights in the context of HIV and AIDS. It is, thus,
not surprising that advice offices receive limited complaints
regarding human rights violations in the context of HIV and
AIDS. This could be based, arguably, on the fact that advice
offices do not always fully understand the complexity
of HIV-related rights violations – especially if the rights
violation does not appear to be closely linked to abuses of a
socio-economic nature. Often, advice offices also lack full
understanding of their crucial role in the partnership, and
the voice, which they could and should be playing in the
NSP implementation process.
…’take responsibility’…
form ‘effective partnerships’…and
ensure civil society’s active involvement
and meaningful participation in the
implementation of the NSP…
A general lack of knowledge and understanding of
human rights, as well as of prevailing rights abuses in the
context of HIV and AIDS persists among the majority of
participating organisations – often impacting not only
on the effectiveness of organisational programmes and
initiatives, but also on the ‘quality’ of the services provided
by organisations. Subsequently, organisation’s effectiveness
in addressing and challenging underlying factors, such as
gender inequality, male dominance, and prevailing stigma,
discrimination and violation of rights, remains limited.
Process
In each of the meetings, participants engaged by
means of group work with various NSP objectives and
interventions. The groups formed themselves based on
sector, interest and/or experiences with particular issues;
and were tasked to identify specific interventions to indepth
engage with; to raise questions/concerns, which
were initiated through the engagement with a particular
intervention; to highlight existing and foreseeable
challenges for the implementation of the intervention; and
to identify strategies of how to address these challenges.
As part of this process, participants opted to engage with
46Provincial feedback on the implementation of the NSP
ALQ September/November 2008
interventions in the NSP that specifically focused on the
increased uptake of VCT4; workplace programmes5; young
people6; home-based care7; ART promotion and treatment
literacy programmes8; comprehensive sexual assault care9;
public sector drug rehabilitation10; drug and alcohol abuse11;
stigma and discrimination12 infection control13; human rights
and LGBTI14; human rights and access to justice15; women
and human rights education16; gender-based violence17;
victim empowerment18; and needs of women in abusive
relationships19.
…disagreed with the view that
changes happening in the
communities should be ascribed
to government implementing
the NSP, but rather to the hard work
of NGOs, who ‘go the extra mile’…
Provincial voices
While the identified challenges and responses varied
by details between the provinces, the following provide
an overview of recurring questions/concerns, challenges
and responses, by identified intervention, highlighted by
participants across provinces.20
Increase upta ke of VCT
Objective 5.2.1
Increase the number of adults who have had an HIV test,
with a focus on men
[Lead Agency: Department of Health; Target: 2007-25%; 2008-35%]
Questions/Concerns
• How can we best convince men to access VCT
• How many people in the community know where the
VCT sites are, and what services are provided in the
communities
• How is confidentiality handled/assured at the sites
• How credible/qualified are the people providing VCT
services, in terms of necessary skills and information
• How can people, who work from six-to-six, access
VCT services, as the opening times for VCT are not
convenient for working community members
• Did an increase in VCT uptake happen, where did
happen, and how is this measured
• How is civil society’s participation in implementing
this intervention ensured
Challenges
• Men refuse to go for an HIV test, and say that they
have a right not to test, and women get accused, or
create suspicion, of cheating and ill-will, when they
introduce the matter of HIV testing
• Women get beaten up for raising the issue, and also for
bringing the ‘virus home’
• Stigma and the fear of knowing deter people from
accessing HIV testing services
• Lack of privacy at most facilities where VCT is
offered, as structure of the facilities are set up in such
way that people who test are clearly identifiable, due
to the rows allocated for HIV testing
• People who would like to test privately cannot afford
to do so, due to poverty and unemployment
• People still fear discrimination at the workplace
• No lists of non-medical sites, and after-hours facilities
are available at community level
• Women especially mentioned that even if men
test, they refuse to communicate their HIV status or
to use condoms after testing, so how can a woman
protect herself, when the husband works in the city and
when he comes back home, he refuses to use condoms
• One participant felt that:
…since the launch of the NSP, women are still the
ones mostly accessing VCT, and 14 months after
the launch of the NSP, a greater effort should
have been made to increase men’s access to VCT.
Thus far, there seems to be no focus on men to
get tested for HIV, but instead an increased focus
on women, particularly in ante-natal settings
is observed.
Challenges of HIV counsellors
• Accessibility to accredited training
• Attitudes of health professionals towards counsellors,
including lack of recognition of lay counsellors as
skilled people/professionals
47
Provincial feedback on the implementation of the NSP
September/November 2008 ALQ
• Stigma, discrimination and violation of rights are not
clearly understood, while stigma and discrimination
impact on counsellors’ quality of work
• Lack of confidentiality, due to lack of resources and
private spaces at sites for counselling
• Limited distribution of female condoms
The group of counsellors suggested that the institutions
that train counsellors be expanded, so that more counsellors
could be trained; femidoms be made available as soon
and widely as possible; standardised procedures for
mentoring of counsellors be implemented; health
professionals be educated on confidentiality and laws/
rights; and better marketing strategies are to be embarked
on in all spheres.
Strategies
• Providing mobile services to especially service men
• Establishing men’s forums, where a multitude of
issues affecting men’s health can be raised, and where
VCT can be accessed
• Intensifying HIV and AIDS interventions and
programmes in the workplace and transport sector
industry
• Intensifying education and capacity enhancement of
traditional healers and leaders
• Providing more education and awareness on values, or
regeneration of morals, and focus on young men
• The Department of Health to release the numbers
of men tested per clinic, to encourage more men to
access VCT services
Home-based car e
Objective 8.2.1
Recruit and train new community caregivers, including
community health workers, with emphasis on men
[Lead Agency: Department of Social Development; Target: 2007-10 000
(10% men); 2008-15 000 (10% men)]
Questions/Concerns
• How many and percentage of the people recruited and
trained were men
• Are the home-based care positions advertised in all
communities
• How many health care practitioners, community
health workers, HBCs were trained thus far
• How much is budgeted for the implementation of
the PSP, and how much of the available budget is
allocated to NGOs
• What are the department’s strategies of getting men
interested in providing care
Challenges
• Cultural and traditional beliefs, which lead to men
avoiding ‘caring work’
• Stipend too small to attract men, as men are not
interested in volunteering
• Organisations do not have enough funding for HBC
programmes; while more carers are required, there
are no funds to increase the number of home-based
carers
• Carers need advanced training; who is going to provide
that, including the funding for the additional training
• Lack of professional nurses in HBC organisations
• Lack of commitment by officials to find solutions to
the shortage of HBC
• Government campaigns not productive, as ‘one day’
events have little to no impact
• Caregivers use some of their stipends to transport
clients to clinic appointments – stipends are for the
carer’s benefit, and it should not be expected from
caregivers to use this money to taxi clients to their
appointments
• Lack of support and mentoring provided to caregivers
• Duplication of services and no coordinated effort and
dialogues
• Patients, especially female patients, may be reluctant
to be looked after by men carers
Strategies
• Dialogue with men to inform them of what their
responsibilities are towards the communities where
they live
• Apply for more funding and give home-based carers
an increase in their stipends
• Ensure that HBC is not gender-based, because HIV
and AIDS affect all
• Care giving organisations should establish contact and
links with the Department of Social Development, and
not wait for the department to contact organisations,
as this may never happen
• NGOs should establish an effective network for
48Provincial feedback on the implementation of the NSP
ALQ September/November 2008
support and mentoring, as well as to strategise and
speak as one voice, when approaching the department
• Support, debriefing and mentoring, meetings must be
structured and include skilled supervisors (e.g., social
workers and professional nurses)
• Caregivers and their clients are subjected to
unacceptable treatment and attitudes from clinic staff
and this should urgently be addressed
Opportunities
Cultural attitudes and myths could be changed if
men partake in community home-based care. And if it is
implemented successfully, then these attitudes and myths
can be proven to be a waste of time, unnecessary, and
counter-productive to community-based efforts and initiatives.
ART promotion and treatm ent literac y
programm es
Objective 6.1.8
Develop and implement community-based ART
promotion and treatment literacy programmes
[Lead Agency: Department of Health; Target: 2007-50% of sub-districts covered]
Questions/Concerns
• Were the programmes developed
• Were the programmes implemented and in which
sub-districts
• The key priority for the design of these programmes is
so that it can be implemented in the most vulnerable
communities – when are these programmes going to
reach the vulnerable communities who live very far
from cities
Challenges
• NGOs working in rural areas seldom have
infrastructure and/or resources/funding and
municipalities face similar challenges
• Materials are mostly prepared in English, which
makes it inaccessible to rural NGOs, and the
communities served by NGOs
• Caregivers have to travel long distances to find
clients and assist them to keep clinical and pharmacy
appointments
• Shortage of staff at clinics leading to a down-referral
system, contributing also to increased levels of
non-adherence to Rx
Strategies
• Making enquiries at the local level about the
programme itself and the levels of implementation
Comprehensive Sexual Assault Care
& Victim Em powerm ent
Objective 2.9.3
Evaluate, improve and roll-out training programmes
on the management of gender violence and rape for
the police
[Lead Agency: Department of Social Development; Target: 2007-Training
programme developed; 2008-30% of police trained]
Objective 2.9.4
Increase the number of districts with accessible social
and mental health services to support child and adult
victims of gender-based violence
[Lead Agency: Department of Social Development; Target: 2007-20% of districts
covered; 2008-40% of districts covered)
Questions/Concerns
• Where is this programme, and what is contained in it,
as we are not aware of the programme
• Who is involved in this programme, and where can
one get a copy of the programme
• How many police were trained in 2007
• Did the police, who received the training, share the
information with their colleagues and are they going
to get follow up training
Challenges
• Training is mostly only provided to mostly senior
management, whilst the lower level officers who
deal with the cases are ‘left in the dark’ about
programme implementation, and also do not
understand their role and responsibility toward
effective implementation
• Lack of resources, including first aid kits, transport,
basic infrastructure, and condoms for women
• Approach and attitude of SAPS and DOSD
• Lack of independence of VEP, which are largely
dependent on SAPS
• Lack of human rights and legal rights education for
members of VEP
Strategies
• All levels of police must attend these trainings to
ensure effective implementation and maximum
49
Provincial feedback on the implementation of the NSP
September/November 2008 ALQ
50Provincial feedback on the implementation of the NSP
ALQ September/November 2008
benefit to both the police and sexually assaulted
persons
• The communities should be participating in the
programmes, because how else will they be aware
what to expect regarding services and PEP, and also
how to hold the police accountable
Stigma and discriminati on
Intervention 17.1.1
Develop a people living with HIV manual on human
rights, including children and people with disabilities;
distribute manual through health facilities, social
development offices, and courts
[Lead Agency: Department of Health; Target: 2007-Manual developed;
2008-50% manuals distributed with training]
Questions/Concerns
• Where is this manual
• Who received training and when
Challenges
• People afraid to know their HIV status
• Lack of confidentiality in VCT sites/services
• High levels of illiteracy, which becomes a challenge in
respect of access to information and messages
• People are not familiar with legislative framework
regarding their human rights, and what to do when
rights are violated
Strategies
• To organise a community general meeting and invite
traditional leaders, health workers, municipality and
councillors to address these challenges mentioned
• To establish a formal structure, such as a health
forum, representing all sectors of the area, including
community members
Young people
Objective 2.2.1
Identify and prioritise interventions in schools reporting
high rates of teenage pregnancies per year through
a gender-sensitive package that addresses sexual
and reproductive health and rights, HIV, alcohol and
substance abuse
[Lead Agency: Department of Education; Target: 2007-Create special map and
database and start implementation in priority schools; 2008–Implementation in
50% of priority schools]
Questions/Concerns
• Was a special map and database created; and if so,
which schools were identified and how many of these
are in our district, since there are still high numbers of
teenage pregnancy reported
• Did they start with implementation yet, and in which
schools
Challenges
• There are high rates of teenage pregnancy at high
schools and high levels of lack of education and
information among young people at schools
• There is a general lack of knowledge among,
particularly, young women
Strategies
• Engaging with both women and men on the benefits of
condom use, and not just focusing on women, will make a
big difference in reducing teenage pregnancy rates
• Make available, as a matter of urgency, femidoms
and male condoms in places where young people can
freely access them, and educate all young people on
condom use
• Education and training should come from people, who
will not judge young people’s sexual behaviour
Objective 2.1.1
Introduce, evaluate and customise curricula and
interventions for different target groups, including
young people out of school, primary school children,
secondary school children, higher education
institutions, young women and pregnant women,
older men and women, higher risk groups and
vulnerable populations
[Lead Agency: Department of Education; Target: 2007-Evaluation,
improvement & introduction; 2008-Ongoing]
Questions/Concerns
• How do we monitor progress
• Where does one access funding for this
Challenges
• The Department of Education is running on old
policy, which is not linked to this strategic objective
in the NSP
• Access to condoms at school is not allowed, and as
such, condoms and condom distribution is not allowed
51
Provincial feedback on the implementation of the NSP
September/November 2008 ALQ
at schools
• Projects that are implemented by relevant stakeholders
are mostly ‘once-off’ and, thus, have no impact,
because behaviour does not change based on once-off/
one day programmes
• The DOE and partners are not speaking the same
language
Strategies
• Education and training, as well as intensified
awareness raising on rights, and the meaning of these
rights in a school environment
• All stakeholders must be involved in the planning
sessions of projects and interventions
• Monitoring and evaluation must be continuous
• Dissemination of information need to be improved
• Resources must be accessible to everyone, without any
form of discrimination in terms of race, gender, etc.
Objective 2.3.5
Increase and coordinate multi-media strategies aimed at
youth that promote communication about HIV, including
HIV prevention, gender and sexuality
[Lead Agency: Department of Health; Target: 2007-2011 Quarterly campaigns]
Questions/Concerns
• Who is the target for these quarterly campaigns
• Are these quarterly campaigns effective, and how is
the effectiveness of the campaigns measured
• Are the campaigns sustainable
Challenges
• We have no funds to carry out these kind of activities
• There is a general lack of communication between
local and provincial structures
Strategies
• Proper communication between all role players on
local and provincial levels, and with civil society and
community
• Identify ways to raise funds to carry out activities
effectively
• One participant highlighted that:
…since there are no funds for the activities, NGOs
cannot implement activities mentioned in the NSP;
and since there is no communication between
role players (local and provincial), NGOs find
themselves having to go the extra mile.
Objective 2.2.2
Implement legislation and policies and programmes
aimed at keeping young people in schools, particularly
orphaned and vulnerable children
[Lead Agency: Department of Education; Target: 2007-Identify & implement;
2008-Ongoing]
Questions/Concerns
• Have the priority schools been identified
• Were programmes implemented, and where were they
implemented
• What is contained in the programmes
• What role does the department play in all of this
• How is funding accessed for this
• Where is the legislation for keeping orphaned and
vulnerable children in schools
Challenges
• Schools do not accept children who do not/cannot
pay their fees, and lack of information as to who the
relevant people are in the Department of Education to
approach about this
• Accessing funding for these interventions is
problematic, and/or the funding allocated does not go
to the right people
• Training of teachers, who are supposed to implement
some of these interventions, is not taking place
Strategies
• Adequate communication between all role players
• The district strategic plan should be common
knowledge, and must be made available to all
role-players
• Funding to implement these programmes must be
easy to access
Human ri ghts & LGB TI
Intervention 2.5.2
Incremental roll-out of comprehensive customised
HIV prevention package for men who have sex with
men, lesbians and transsexuals, including promotion
of VCT and access to male and female condoms, and
STI symptom recognition
[Lead Agency: Department of Health; Target: 2007-Programme developed with
relevant groups; 2008-40% of groups covered]
52Provincial feedback on the implementation of the NSP
ALQ September/November 2008
Questions/Comments
• No interventions were introduced by DOH with the
NGOs that work with LGBTI issues, and/or LGBTI
communities
• Was this programme developed, and if so, who were
the ‘relevant’ groups that participated in the drafting
of this programme
• Where was the programme implemented thus far
Challenges
• Stigma and discrimination based on a person’s sexual
orientation/identity
• Hate crimes and hate speech based on a person’s sexual
orientation/identity
• Coming out challenges, including being chased away
from home, due to one’s sexuality
Strategies
• Increase efforts on educating communities about LGBTI
• From DOH we need the following: access to treatment,
femidoms and dental dams to be freely available
• Equal treatment and no discrimination
Human rights and acc ess to justice
Objective 16.3
Ensure a supportive legal environment for the provision
of HIV and AIDS services to marginalised groups
[Lead Agency: Department of Health & South African Human Rights
Commission; Target: 2007-Materials developed and approved; 2008-40%
of organised groups covered]
Questions/Concerns
• Discrimination within households, and how is this
addressed
• How is stigma being addressed
Challenges
• Lack of adequate resources, including financial
resources, within DOH, DOSD, DOE, and human
rights sector
• Developed policies and programme materials are not
widely distributed
Strategies
• Approach, and engage with LAC, PAC and SANAC
to present challenges
• Guidelines to be made available to relevant persons
and/or organisations
• Material on education to be made available and
distributed for special needs persons, including drug
users, prisoners, orphaned and vulnerable children,
and older persons
• Materials to be language accessible
Women and human rights educati on
Objective 19.1
Improve access to human rights education and
information for women in resource limited settings
[Lead Agency: Department of Health & Department of Social Development;
Target: 2007-30% of identified nodes; 2008- 50%)
Questions/Comments
• Where and which nodes were identified
• Where do we get the 2007 report
• Are these lead agencies working with other
stakeholders, including with civil society stakeholders
• From the civil society point of view, who is monitoring
implementation
Challenges
• Lack of access and control of resources
• Gender equality not mainstreamed into other goals
• Limited access to people most in need of help
• When a lead agency is named, without mention of
a specific lead person, it becomes difficult to get
information, as one would be sent from pillar to post
• There should be open communication lines, so that
one could engage with reports submitted on
implemented objectives
Strategies
• Using the national gender framework to infuse gender
in the NSPPSPLSP
• Involving more community leaders in the projects
• Inviting other organisations and departments, when
discussing strategic plans, so as to get ‘buy-ins’
Gender-based violence
Objective1.2.2
Develop and implement a communication strategy,
including leadership messages, to educate men
and women, boys and girls, on women’s rights and
human rights
[Lead Agency: Presidency; Target: 2007-Communication strategy developed;
2008-quarterly campaigns]
53
Provincial feedback on the implementation of the NSP
September/November 2008 ALQ
Questions/Concerns
• Was the communication strategy developed, and
where is the proof
• What kind of quarterly campaigns are in place
• Are there any national policies and legislation about
improving the status of women, and if so, why don’t
we know about them
Challenges
• No real partnership with government to address
human rights abuse issues
• Policies are in place within government structures, but
there is lack of implementation
• Secondary victimisation lives unabated, and so too the
delay of cases
• Lack of adequate counselling and ongoing
counselling for rape survivors, and no adequate
counselling skills among health workers
Strategies
• Officials need gender training, as many do the talk,
but do not understand the meaning of gender
• Call meeting with relevant stakeholders, including
SANAC and provincial and district AIDS Councils
• Materials must be inclusive, accessible, and speak to
the realities of all people (not just, for example, speak
to youth)
Objective1.3.1
Develop communication strategies, including leadership
messages, which addresses the unacceptability of
coercive sex, gender power stereotypes and the
stigmatisation of rape survivors
[Lead Agency: National Prosecuting Authority; Target: 2007-Communication
strategy developed; 2008-quarterly campaigns & ongoing]
Questions/Concerns
• Was the communication strategy developed, and,
if so, where is it
• What kind of leadership messages are included in the
communication strategy
• Were the quarterly campaigns launched, and if yes,
what has been the impact
• How come we are not aware of your campaigns
• What is the strategy to deal with the stigma of rape
survivors
Challenges
• Lack of information materials that are accessible to
illiterate persons
• Lack of resources to implement programmes
• Lack of adequate implementation of legislation
• Lack of government assistance/resources
• NGOs are often excluded from government
Strategies
• Forming partnerships with CBOs, NGOs, FBOs to
discuss issues that affect communities, including
matters arising from the NSP
• Lobbying government, as a consortium, for adequate
and timely implementation – it is the duty of NGOs to
monitor the implementation of policies and
• Lobbying government to speed up the rape case process;
to provide counselling to assessors; and to ensure that
victims receive thorough counselling therapy
Address the needs of women in abusive
relati onships
Objective 19.3
Distribute guidelines on SAPS and their responsibilities in
terms of the National Sexual Assault Policy
[Lead Agency: Department of Justice; Target: 2007-40% of facilities covered;
2008-50%]
Questions/Concerns
• Where are the guidelines
• Which facilities have benefited from these guidelines
thus far
• One participant, representing a rural-based
organisation, highlighted:
…as an organisation working in a rural area,
and in the gender-based violence sector, there is
still a big gap in how to help women in abusive
relationships, so, it would be very helpful to us to
have these guidelines.
Challenges
• Lack of funding to send people, who will return and
can train others on the Guidelines, for training
• Lack of adequate knowledge amongst SAPS
personnel – for example, loss of dockets;
discrimination of women and girls from male
SAPS police officers; SAPS fails to provide proper
explanations and follow up to victims of abuse
…SAPS fail to follow proper procedures, with
the result that many women will come to our
organisation to seek assistance.
Strategies
• Train SAPS officials on how to address needs of
abused women, and let officials conduct workshops
to communities.
• Police officers who received the training must
workshop their colleagues, so they are also informed
• Distribute information flyers to the community so as
to ensure community awareness
…that there is minimal involvement
by civil society and community in the
implementation of the NSP…
Conclusion & Way Forward
These meetings clearly highlighted that civil society
is experiencing many challenges relating to both the
implementation of interventions and programmes, as
well as the effects of fragmented approaches within civil
society. However, civil society organisations also offered
‘solutions’ for the identified challenges. And while some
of the identified ‘solutions and strategies’ to further the
implementation of the NSP may be as ‘ambitious’, as some
of the identified NSP interventions themselves, it clearly
points to showing civil society’s commitment to ‘take
responsibility’, to address and overcome challenges, to form
‘effective partnerships’, and, in so doing, to facilitate and
ensure civil society’s active involvement and meaningful
participation in the implementation of the NSP.
FOOTNOTES:
1. Chapter 12, p119.
2. NSP, Foreword, p4.
3. NSP, Foreword, p4.
4. Objective 5.2.1 of the NSP.
5. Objective 16.1.2 of the NSP.
6. Objectives 2.1.1, 2.2.1, and 2.3.5 of the NSP.
7. Objective 8.2.1 of the NSP.
8. Objective 6.1.8 of the NSP.
9. Objective 2.9.3 of the NSP.
10. Objective 2.8.4 of the NSP.
11. Objective 2.8.3 of the NSP.
12. Objective 17.1.1 of the NSP.
13. Objective 4.1 of the NSP.
14. Objective 2.5.2 of the NSP.
15. Objective 16.3 of the NSP.
16. Objective 19.1 of the NSP.
17. Objectives 1.2.2 and 1.3.1 of the NSP.
18. Objective 2.9.4 of the NSP.
19. Objective 19.3 of the NSP.
20. For the purpose of this article, only some of the interventions will
be introduced. For a full report on all the interventions, please contact
admin@aln.org.za.
Gahsiena van der Schaff is the Campaign and
Advocacy Coordinator at the AIDS Legal Network
(ALN). For more information and/or comments,
please contact her on +27 21 447 8435 or at
campaign@aln.org.za.
54Provincial feedback on the implementation of the NSP
ALQ September/November 2008
55
Comment/Making a point
September/November 2008 ALQ
The first documented case of AIDS in
the United States was in 1981. These
findings shocked the nation. While
Americans were still learning what the
disease was, what to call it, and how to
respond, nearly two cases of AIDS were
being diagnosed in the country every
day. The disease was labelled as a ‘gay
cancer’ both in everyday language,
and supposed scientific terminology
such as GRID, (gay-related immune
deficiency). Four years later, President
Ronald Reagan publicly mentioned
AIDS by name for the first time during
a press conference, and the national
discussion finally began.
It is argued that these four years where silence and
denial replaced the need for confronting the disease and
providing the American people with the information
they so desperately needed, only fanned the flames of
fear and hate. In speaking openly about HIV and AIDS,
we are helping to reduce the stigma associated with the
disease. We are lifting the cloak of fear and ignorance
from where intolerance and indifference reside. We are
all affected by AIDS, and how we address this issue is
of paramount importance to respond to the disease, but
to voice concern, and to act, are two vastly different
and challenging tasks. A leader must not only make
promises, but keep them as well. On November 4th
the United States elected a new President, and it is
critical that this person takes a
stand to not only speak publicly and
openly about the realities of HIV and AIDS, but
to commit fully to stop the pandemic. At the time
of the 2008 election campaign, both presidential
candidates, John McCain and Barack Obama, had a
distinctly different approach to the subject, which is
worth analysing.
In 2007, there were an estimated 2 million people
living with HIV in North America, Western and Central
Europe combined. The United States accounted for 1.2
million of that total, the highest in the region. There were
31 000 AIDS related deaths in the United States in 2007,
a number which has been steadily growing since 2004.
HIV and AIDS is still a serious problem in the United
States, and a strong domestic strategy for responding to
the disease is essential to improving the general health
of the population, and to encourage investment and
immigration from abroad, a key source of income and
cultural contribution to the country. As expected, the then
two presidential candidates differed on several issues.
Senator McCain’s domestic HIV and AIDS policy is
one of stark contrasts. In 1993 Senator McCain voted to
prevent permanent immigration to the United States if a
person is living with HIV. This ban is still in existence,
continuing to humiliate and discriminate against
people living with HIV. He has also voted to imprison
HIV-positive healthcare workers who perform surgery,
and to involuntarily test patients for HIV, if they are
The decision signals a
new beginning…
Nathaniel Meyer
56Comment/Making a
point
ALQ September/November 2008
about to undergo surgery. In terms of domestic funding,
John McCain assisted in passing one of the most
important pieces of legislation in America’s ‘battle’
against AIDS. McCain was a co-sponsor of the Ryan
White Comprehensive AIDS Resources Emergency
(CARE) Act of 1990. The CARE Act was, and continues
to be, the largest federally funded programme for people
living with HIV. While Senator McCain chose not to cosponsor
the Act’s 2000 re-authorisation, the vote passed,
and the Act was re-authorised again in 2006, with an
increase in funding to $2.1 billion until 2009.
…Obama is strictly opposed to
federal funding for
abstinence-only-until-marriage
programmes…
President-Elect, Barack Obama, a Senator from
Illinois, has taken a far different approach to the
response to HIV and AIDS in the United States. Obama
has created a national AIDS strategy, detailing both a
domestic and global agenda. In the plan, he outlines his
goals to lift the federal ban on funding for safe needle
exchange programmes. Out of all new HIV diagnoses
in the United States in 2005, 19% were attributed to
infected needle injections. His running mate during the
election campaign, Senator Joe Biden from Delaware,
also believes in needle exchanges. Biden has been
quoted as citing the benefits of such a programme in a
report by the National Institute of Health that showed
a 30% or higher reduction in HIV transmission rates
among injection drug users who participate in needle
exchange programmes.
Barack Obama has also been a primary sponsor
of the Microbicide Development Act, which would
promote research of microbicides to prevent HIV
prevention, and has supported the JUSTICE Act, which
would allow the distribution of condoms in federal
prisons. Obama is strictly opposed to federal funding for
abstinence-only-until-marriage programmes, and along
with Senator Biden, is a co-sponsor of the Prevention First
Act. The bill includes provisions to ensure that private
health plans provide the same coverage for contraceptives
as for prescription drugs and other services. The
Prevention First Act also increases access to information
and services such as emergency contraception in order to
reduce the number of unintended pregnancies, abortions
and sexually transmitted infections including HIV.
AIDS is a disease that crosses deserts, oceans and
mountains, borders and battlefields. It is critical for
there to be open international discussion and multilateral
support in order to effectively respond to HIV and AIDS
across the globe. The American President-Elect must
be ready to respond to international calls for aid, and
provide voluntary assistance to help effectively respond
such a global epidemic. Previous U.S. Presidents have
done much to help the nations of the world with respect
to HIV and AIDS, some doing more than others. Barack
Obama has, thus, an enormous responsibility to do more
than the minimum, to increase funding, promote open
discussion, and reduce the international stigma attached
to the disease.
One of the most important topics with regards to HIV
and AIDS funding and prevention, both in the United
States and sub-Saharan Africa, was the requirement
of abstinence-until-marriage programmes. Up until
2008, one third of all U.S. foreign aid to halt HIV
was provided only to abstinence-until-marriage based
programmes. McCain has argued the need for abstinence
programmes, insisting that only if this strategy fails,
will preventative measures, such as contraceptives, be
provided. In following with this policy, John McCain
publicly supports Republican Senator, Dr. Coburn,
who advocated abstinence requirements in the recent
re-authorisation of the President’s Emergency Plan
for AIDS Relief (PEPFAR). This legislation was, and
continues to be, the largest contribution to respond to
a single disease, by a single nation, in history. John
McCain and Dr. Coburn demand, however, that a
significant portion of these funds are only released, if
used for abstinence programmes in the host country.
Barack Obama has made several significant
commitments to Africa and the rest of the world,
including his pledge for support in the global response
to HIV and AIDS, and other major diseases. In order to
more effectively distribute aid, Obama believes that to
engage in effective sex education, people must have all
the information necessary – information on
contraceptives, other science, and reality-based
prevention methods, in addition to abstinence-only
education. A restructuring of the fund distribution
system of PEPFAR is also a cause Obama supports.
Barack and Biden are co-sponsors of the
HIV Prevention Act, which no longer requires
that one-third of overseas HIV prevention go to
abstinence-only-until-marriage programmes, and would
instead direct that funding to comprehensive prevention
education. Though there was opposition, including
Senator McCain and Dr. Coburn, when PEPFAR was reauthorised
in 2008, abstinence-only requirements were
lifted, thanks to support from policy makers like Obama
and Biden. Reaching beyond sub-Saharan Africa, Obama
also has supported an increase in funding for Southeast
Asia, India, and Eastern Europe. These additional funds
would be provided by PEPFAR and would constitute an
increase of $1 billion over the next five years. Barack
Obama has co-sponsored several pieces of legislation
aimed to improve the world’s capacity and response to
HIV and AIDS. He co-sponsored the African Health
Capacity Investment Act of 2007, which plans to
improve the capacity of health systems in sub-Saharan
Africa, and the International Cooperation to Meet the
Millennium Development Goals Act of 2005, which
urge the forgiveness of debt, in addition to, increased
funding for the United States’ international commitments
to the responses to HIV and AIDS globally.
…made several significant
commitments to Africa and the rest of
the world…
President-Elect, Barack Obama, has been
straightforward, and open about his policies to halt the
global increase of the disease. He has given his share
of inspiring, heartfelt speeches as well, but he has
also backed them up with a national and international
strategy based on the reality of the disease, passing
legislation that has sought to increase the rights and
protections of people living with HIV, and has pledged
to double American foreign aid to $50 billion a year
by 2012.
As an American, I had the privilege of voting in
what has been described as the most important U.S.
Presidential election in a generation, and the results will
have far reaching consequences. I hope the decision
signals a new beginning in American politics and foreign
policy, and I am proud to be a part of the process. I am
asking you, the international community, to help us
achieve this. We all must demand action and remind our
leaders what they promised to do, and what still needs
to be done in order to effectively respond to the global
HIV and AIDS epidemic – as we are all equal, we are all
affected, and we are all positive.
Nathaniel Meyer is an Intern at the
AIDS Legal Network (ALN). For more
information and/or comments, please
contact him on +27 21 447 8435 or at
nathaniel.uo@gmail.com
57
Comment/Making a point
September/November 2008 ALQ
The International Community of Women Living
with HIV and AIDS (ICW), the only global network
of HIV positive women, was founded in 1992. We
have over 6000 members from 128 countries. For
over a decade, ICW has been a co-organiser of the
International AIDS Conferences (IAC). The principle
aim of our role as co-organiser is to increase the
meaningful involvement of HIV positive women,
in both content and form, of the conference.
Introduction
In the build-up to the Mexico City Conference
of 2008, ICW developed a simple meaningful
involvement of women living with HIV (MIWA)
report card for conference delegates, be they HIV
positive women, general delegates, or members
of the IAC to fill out. We felt the need to build up a
proper dossier of experiences and thoughts about the
meaningful involvement of HIV positive women in
events like AIDS2008, and to examine the continuing
challenges that need to be overcome to assure that
MIWA happens.
The responses we received are summarised here,
and from them we make recommendations for how the
environment of International AIDS Conferences can be
developed to protect and enhance positive women and
men’s involvement at Vienna 2010 and in the future.
This report also contains views put forward through
other evaluative methods, such as ICW conference
reports (submitted by staff and members attending
the conference), personal communications between
conference delegates and the compilers of the report,
the ATHENA network, and other email list-serves, such
as SEA-AIDS.
Positive women’s involvement in
Mexico City AIDS2008
The 17th International AIDS Conference had probably
the greatest (and most meaningful) involvement of
women – and men – living with HIV of any of
the international AIDS conferences to date.
At least four openly positive women sat on
the Conference Coordinating Committee
(CCC), and at least one on each of the three
programming committees: community, leadership and
scientific (see below for more details). The conference
itself, in the words of one ICW member, was ‘vibrant
with HIV positive people’, and HIV positive women
were more visible then ever, speaking in the opening
ceremony of the conference, a plenary session, and
in myriad abstract-driven, skills building, satellite
and global village sessions. Positive women were
involved in the International AIDS Conference as
delegates, speakers, volunteers, poster authors,
advisors to other speakers, mentors, scholarship
recipients, as organisers of the Global Village or
involved in Global Village activities, particularly in
the People Living with HIV Networking Zone or the
Women’s Networking Zone – 75% of whose sessions
included positive women speakers. Positive women
with committee involvement tended to have an
unmanageable number of other commitments and
responsibilities throughout the conference as
well – one respondent who sat on the CCC was
involved in ‘over 50 different events’. Many positive
women were also involved in pre-conferences and
in side-meetings and events not directly related to
the conference itself. And for a great number of
positive women attending the conference, networking
with other positive women, exchanging ideas and
58Comment/Making a
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ALQ September/November 2008
Gains continue to be hard-won…
Meaningful Involvement of Women Living with HIV (MIWA) at the IAC
Luisa Orza
updating themselves on issues were the focus of
their participation.
Increasingly, however, ICW feels that these gains
continue to be hard-won, when in fact they ought to,
by now, be a given; GIPA1, MIPA2, MIWA, however
you initial it, is an accepted rule of AIDS and related
organisations. And yet, these acronyms are not always
even spelt out, let alone put into practice.
Although HIV positive women are increasingly
leading, or being represented, in sessions that address
human rights issues and positive women’s experiences,
they may not have been so visible in more ‘general’ or
scientific sessions. The separation of the Global Village
(GV) – both physically and in terms of programming –
from the main conference forum is adding fuel to what
is increasingly being seen as a deliberate side-lining of
the community.
There were HIV positive women presenting in
all the sessions I attended. Perhaps this was
because of the nature of the sessions I attended,
which focused on human rights and access to HIV
services. [Mexico City Conference Delegate]
Though numbers of younger people attending the
conference and sessions that address the interests of
young people have risen steadily, the visibility of young
HIV positive women continues to be markedly low. In
particular, there is a significant absence of HIV positive
youth (under 18) for whom even attending the conference
presents an additional layer of financial and logistical
barriers, as people under the age of 18 are not permitted
to attend without a guardian or chaperone, nor are they
eligible to apply for a scholarship. Furthermore, despite
the increased visibility of HIV positive women speakers
and delegates, often, it is the same few positive women
speakers representing in several different sessions. There
is a conspicuous need to create spaces for new and young
HIV positive women leaders to come through.
We need to let new faces and more women onto
the surface not the same faces every time. [Mexico
City Conference Delegate]
I would have liked to see more young positive
women and if possible more married positive
couples who had the chance to have children and
their experiences with that challenge. [Mexico
City Conference Delegate]
…a few positive women appear in an
overwhelming number of sessions and
meetings, risking burn-out and illness
by the end of the conference…
I think that in this conference there was a greater
participation of women than in other conferences,
and women’s themes were more on the agenda
than in other conferences. However, I think that
we need greater participation of positive women in
sessions. [Mexico City Conference Delegate]
Civil society organisations (networks, NGOs,
bilaterals, etc) play an important part in facilitating the
involvement of HIV positive women in the IAC, through
a variety of means: consultations with positive women
prior to the conference; representation of positive
women’s issues in sessions, posters and materials; report
backs; by attending sessions that had positive women
speakers and participating in ICW events; through
partnering with positive women’s organisations and
networks; fundraising for positive women to attend the
conference; ensuring that, wherever possible, positive
women are present as presenters in their sessions;
mentoring and giving support to women to apply for
abstracts through workshops and outreach.
Most of the people I work with are positive African
women3. I spoke to them about the conference
before I went to the conference and they advised me
on sessions to attend and topics they wanted me to
listen out for and report back to them (which I’ll be
doing on the 16th Sept). At the conference, I attended
sessions where I heard from positive people – they
challenged me, inspired me and motivated me in my
work. [Mexico City Conference Delegate]
We conducted a process of outreach and mentoring
to support women with HIV to present their
work as abstracts and to apply for scholarships.
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Comment/Making a point
September/November 2008 ALQ
This involved a ‘hands on’ workshop on abstract
writing and helping women to write up their
abstracts, abstract review, translation, and help
with inputting the data into the online IAS system.
[Mexico City Conference Delegate]
Challenges in supporting the greater involvement
of HIV positive women include communications –
especially where women do not have regular access to
the internet. Stigma and discrimination also constitute a
challenge to involving positive women in places where
fewer women feel able to disclose their status. Women
living with HIV may simply not make themselves
known for consultation.
We are ready to involve positive women in our
work and in our association. It would be great
pleasure and honour for our association but in
our area there are not positive women. Usually
in my country women keep their status in secret.
[Mexico City Conference Delegate]
The impact of positive women’s
involvement at the IAC
The main impact of positive women’s involvement
at the IAC is the raising of positive women’s visibility
– including young HIV positive women, and therefore
also raising awareness of positive women’s issues with
conference delegates, and in some instances, with
specified target audiences (e.g., the WHO); influencing
the programme to be more inclusive of positive women
and positive women’s perspectives and experiences.
…[my] involvement in the CCC was to ensure the
meaningful inclusion of positive women on all the
committees and at least one positive woman to
speak in plenary session. [HIV positive woman,
Mexico City Conference Delegate]
Positive women feel that their participation at the
IAC has the effect of encouraging, motivating and
inspiring other positive women (both at the conference
and those that do not attend, through report-backs,
newsletters, blogs and other internet-based forums
during and immediately after the conference) in areas
of disclosure, accessing appropriate treatment and
care, positive living, and leadership; providing lasting
resources that other positive women can use in
their (advocacy) work; networking and establishing
connections with other positive women and sharing
experiences.
Positive women tend to feel that what they learn at
the conference will be shared with others when they
return home. However, the very small (relative) number
of people living with HIV attending the conference
remains problematic in terms of representation and
ways for reaching, influencing and representing those
who do not attend, need to continue to be explored and
experimented. Research needs to be done on how, or
whether or not, women living with HIV who did not
attend the conference take an interest in, follow or learn
from the conference at all and to what extent.
…women living with HIV may simply
not make themselves known for
consultation…
The IAC is a useful forum for forging new and
strengthening old partnerships, which positive women
feel will benefit their networks and organisations. For
women, participating in global conferences for the first
time, the issue of meeting other positive women and
hearing how women all over the world have faced and
dealt with similar challenges to their own, continues to
be, for HIV positive women, one of the most powerful
impacts of attending an International AIDS Conference.
I think that the most important thing when women
participate in conferences like this for the first
time is that they can find and share the experience
with other positive women, that they feel that they
are not alone, that they see that things are difficult
but that it is possible to enjoy a good quality of
life and that they have to learn how to get their
rights valued. [HIV positive woman, Mexico City
Conference Delegate]
However, the manner and shape of the involvement
of positive women and men at the AIDS conferences
reflect the ways in which people living with HIV, are
60Comment/Making a
point
ALQ September/November 2008
and are not, involved in responses to HIV and AIDS in
general: prominent in some areas, but basically underresourced
and sidelined to certain activities.
It has made me see the global architecture as a
whole and see more clearly the role that people
living with HIV have and do not have. I see that
the AIDS response is sometimes more of a business
than a humanitarian effort and that people that
are HIV + are incidental to the bottom line, that
resources are often not going to where they should
go or are needed most. The conference helps me
to see this more clearly. It is a microcosm of the
industry as a whole. [HIV positive woman, Mexico
City Conference Delegate]
61
Comment/Making a point
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The International AIDS Society (IAS) is the custodian and
principle organiser of the International AIDS Conference
(IAC) and the Conference on AIDS Pathogenesis,
prevention and treatment, both of which are held on
an alternating biennial basis. As sole underwriter of
the IAC, the IAS leads the Conference Coordinating
Committee (CCC), made up of IAS members,
international partners, regional/local partners, co-chairs
of each of three Programme Committees (Leadership,
Scientific and Community) and UNAIDS. The CCC is
ultimately responsible for the theme, vision, policies
and programme of the Conference; and the role of
Programme or Track committee members is to plan and
execute respective programming within the Conference
and to advise on issues pertaining to each programme
within other areas of the conference.
The IAS supports the involvement of the international
partner* members of the CCC through provision of
a conference package, consisting of a conference
co-organiser fee (full fee = $50,000), a satellite
session space, press conference space, booth, 20 free
registrations, office space and press office space/media
booth. For the first time, in 2008, the international
partners were also eligible to apply for a pre-conference
outreach package to enable consultation and capacity
building among constituencies of the networks and
organisations that make up the CCC. Further, the IAS
carries out its own outreach specifically within the host
community, and positive women are one of the targets
of its local outreach programme.
In addition, the IAS provides scholarships. For the
Mexico City conference, 9757 scholarship applications
were received, and 854 scholarships were eventually
awarded (8.8% of all applicants). Of these, 903
applicants self-identified as HIV-positive women, of
whom 77 were offered a scholarship (8.5% of positive
women scholarship applications and 9% of the total
awarded scholarships). Of the scholarships awarded
to HIV positive women, 47 were full scholarships (of a
total of 369 full scholarships offered; 12.7%) It should
be noted however, that not all applicants request a full
scholarship and that disclosure of sero-status on the
application form is entirely optional.
A further source of support is the provision of the
People Living with HIV lounge during the conference.
This is a space for which entry is restricted to HIV
positive delegates, and where comfortable seating and
free food is provided. Several of the respondents to the
ICW MIWA report card said that they found this space a
valuable resource, affording rest and respite while at the
conference.
The positive lounge provided a most welcome respite
from the hustle and bustle of the first ever IAC I was
attending. [HIV positive woman, Mexico City
Conference Delegate]
*For Mexico City 2008, the international partners on the CCC
were ICASO, World YWCA, Asian Harm Reduction Network, and
ICW/GNP+. (ICW and GNP+ shared a seat)
The IAS
Overwhelmingly, non-positive women respondents
felt that hearing a positive women speak on issues
affecting positive women was real, moving, inspiring,
powerful and brought insights to the issues that otherwise
would or could have been missed, including genderspecific
insights. The challenge is to extend this beyond
the walls of the conference proper.
It breaks the silence which too often affects women
in every country, North and South. I appreciate
the gender-specific insights that women bring to
the discourse, and the naming of particular issues
that affect women living with HIV which too often
are overlooked when the speakers are male, or are
presented second-hand by women or men speaking
‘on behalf of’ women living with HIV. [Mexico
City Conference Delegate]
It moves and inspires me. I think that positive
women are the most appropriate to explain the
complexities of their own lives, their priorities,
and to present and validate good practices in the
response. [Mexico City Conference Delegate]
The presence of positive women also made delegates
more determined to ensure that they start or continue to
involve positive women more meaningfully in their own
work, and also brought a new or different meaning and
reflection to their work.
I think after hearing their views, seeing them in
the discussion I am more inspired to work with
HIV+ women in my own country. [Mexico City
Conference Delegate]
I was extremely happy to hear the issues affecting
these women so I can review my ways of working
with them so as to really address their issues
properly. [Mexico City Conference Delegate]
Barriers and Challenges to greater or more
meaningful involvement
Nevertheless, many barriers still remain to a greater,
more meaningful, and yet, more fruitful involvement
of HIV positive women in the international events of
this scope and scale. The main impediment to positive
women’s participation at the conference as delegates
was lack of funds and financial support through
scholarships. Some women also had abstracts rejected,
and felt that they were not given the opportunity to
contribute in meaningful ways, because spaces for doing
so were not made available. It was felt that there was
a need for more positive women in the programming
committees, and also that more time, mechanisms and
structures are necessary to ensure wider consultation
with and between networks – so that those representing
on committees would have ample opportunity to consult
with broader networks of positive women, so that there
could be greater dialogue and linkages between positive
women and men representing on different committees
and tracks. Also the conference organisers should work
with the host government to ensure more involvement
from, and engagement with, the host community and,
particularly, that more positive members of the host
community are able to attend the conference.
…the dearth of young
HIV positive people was
particularly noticed…
Conference attendance
For the vast majority of women living with HIV
attending an International AIDS Conference is
impossible. Language and technology barriers will
prevent most HIV positive women from applying for
a scholarship. The fact that abstract and scholarship
submissions have to be made on-line and in English
(or another official conference language depending on
which country is hosting the conference) automatically
excludes most HIV positive women. And even for those
who are able to apply for and receive a full scholarship,
financial barriers – opportunity costs, childcare and
other logistical considerations – may prevent them from
being able to take it up. Further, already marginalised
groups of positive women, such as young positive
women, positive women with other disabilities, or
socially marginalised positive women, such as sex
62Comment/Making a
point
ALQ September/November 2008
workers, drug users, migrants and prisoners, are even
less likely to have access to the necessary resources to
enable attendance.
Further challenges, such as the difficulties obtaining
a visa, and travel restrictions for people living with HIV,
provide additional barriers to attendance. And once at
the conference, language can continue to act as a barrier
to meaningful participation, as well as the overwhelming
size and nature of the conference itself for women who
are not used to this kind of environment.
My case was not like the majority of women, but
many of them had problems with visas, since the
standard letter of invitation on the conference
website often wasn’t enough. As for the registration
via Internet, there were a lot of difficulties getting
on to the webpage and with how slow the webpage
was. A lot of people are not used to filling in forms
on the internet. These conferences are supposed
to enable participation, not exclude them.
[HIV positive woman, Mexico City conference
Delegate]
At the Mexico City conference, the dearth of young
HIV positive people was particularly noticed, and
especially the particular challenges facing under-18
youth, who are only permitted to attend with a chaperone.
To apply for a scholarship the applicant must be 18 years
old or above.
Now we need more young positive women – there
was a huge gap here! [HIV positive woman,
Mexico City conference Delegate]
Participating as a presenter
Similar challenges face positive women who wish to
participate in the conference as a speaker or presenter.
Abstracts have to be written in English and submitted via
the internet. Abstract-writing is a skill that many women
will not be familiar with, and without knowledge of the
process it is hard to guess what the abstract reviewers
will be looking for. The fact that almost any involvement
is done on a voluntary basis – i.e., may mean sacrificing
other sources of income – can prove challenging.
Positive women are often approached to speak in
sessions organised by other organisations or delegates,
but often this is on the condition that they have already
received funding from elsewhere, which partly accounts
for the fact that a few positive women appear in an
overwhelming number of sessions and meetings, risking
burn-out and illness by the end of the conference.
This situation is exacerbated by multitudes of lastminute
requests for positive women speakers and input;
conference and global village programmes are finalised
as little as a month before the start of the conference,
and individuals’ and organisations’ schedules tend to be
subject to changes right up to the eleventh hour. This
makes it very difficult to bring in extra speakers even
when (as rarely happens) resources are available.
…barriers still remain to a
greater, more meaningful, and yet,
more fruitful involvement of
HIV positive women…
Involvement in the conference coordinating and
programming committees
Having positive women on the conference
coordinating committee (CCC), track or programme
committees (PCs) definitely serves to increase avenues
of involvement and impact in other areas of the
conference – through lobbying for positive women
speakers and inclusion of certain issues and sessions.
Women and men living with HIV participate in these
committees on the same terms as other committee
members (and in fact are not required to disclose their
sero-status in the selection process or at any other
time). However, this kind of involvement needs to be
supported by local, regional and/or international civil
society mechanisms, networks and constituencies, if
not, it becomes both unsustainable for the individuals
involved and meaningless for the wider constituency
they represent. Furthermore, the work put into the
conference committees is done on a voluntary basis,
and – depending on how far committee members have
to travel – can result in fatigue and burnout long before
63
Comment/Making a point
September/November 2008 ALQ
64Comment/Making a
point
ALQ September/November 2008
ICW has been a co-organiser of the International
AIDS Conference since the conference was held in
Durban in 2000. Our foremost aim has been to increase
the participation and visibility of HIV positive women in
this, the largest forum dedicated to issues around HIV
and AIDS.
At the Mexico 2008 AIDS Conference, ICW
highlighted the following issues:
• Violence Against Women – discussed at the ICW/
ATHENA satellite
• Using the law to protect HIV positive women’s rights,
including when they are coerced to be sterilised
• Exploring why MIPA does not always work for us
• Putting women back into the gender debate
o • The impact of criminalisation on HIV positive
women
Many of our members spoke on these areas and
others such as ACTS and SRHR in the main conference
and in the Global Village. In the latter arena we helped
organise and run sessions in the People Living with
HIV Networking Zone with GNP+, and the Women’s
Networking Zone (WNZ), with the ATHENA Network
and other women’s rights organisations. The ICW Booth,
much larger this year than in previous years, in the
Global Village gave a chance for ICW members to meet,
stay in touch with what is happening of interest to HIV
positive women at the conference, and collect new ICW
materials.
ICW used our Satellite and Press Conference at the
Mexico City to raise the profile of ICW’s peace initiative
– A campaign initiated by ICW Latina. Called ‘2011 – A
Year of Peace as a chance to stop AIDS’, the campaign
has been bolstered by ICW International Steering
Committee member and long-time AIDS advocate,
Patricia Perez’s nomination for a Nobel Peace Prize.
At least 12 ICW members sat on the CCC and
track/programming committees. Programme co-chairs
are nominated and elected by members of CCC, and
then form part of the CCC. Programme Committee
members – some of whom kept in regular touch with
other human rights and positive activists through
organisations, such as the World YWCA and the ATHENA
network, to ensure that they represented a diversity of
views in their recommendations – are also nominated
and elected by the CCC.
ICW was also a co-organiser of Living 2008, a twoday
pre-conference for people living with HIV, which
focused on four areas: criminalisation, sexual and
reproductive health rights, access to care, treatment
and support, and (positive) prevention, to develop
and consolidate advocacy messages for delivery and
the creation of a critical mass in the IAC. (Report now
available.)
It is important to ICW, not only to encourage
and support as many members as possible to apply
to attend the conference, through abstract and
scholarship application writing support, partnerships,
and putting members’ names forward as speakers
and presenters; we also make every effort to ensure
that the views of our members who do not attend the
conference are adequately represented by those who
do through pre-conference consultation, and that
those who act as representatives remain accountable
to the entire constituency through regular and accurate
feedback of our conference activities. Funding provided
by the IAS during the lead-up to the Mexico City
conference was used to carry out out-reach, support
and consultation with ICW members during the
conference planning period. Other funds were used
to support an e-consultation in preparation for Living
2008 and daily blogs through our e-forum back to
non-attending members on a daily basis throughout
the conference. An issue of our regular quarterly
newsletter is dedicated to what ICW achieved at the
17th International AIDS Conference, thus, providing
a snapshot of the conference experience to nonattending
members as well as raising crucial issues for
debate that were prominent conference discussions.
ICW at the IAC
the conference takes place. In addition, participation in
the actual conference is not guaranteed for organising
committee members. One ICW member from Namibia
who sat on the leadership programme committee for
Mexico City, was so exhausted from the four trips she
had taken over the course of the 18 months she sat on
the committee – travelling for up to 40 hours (including
transfer times and layovers) in each direction, that, even
being awarded a full scholarship, she decided not to
come. Her scholarship, however, was not transferable.
She was unable to pass it on to another ICW member
to come in her place and represent the work she had
done, while others who had sat on track committees had
to source their own funding support to enable them to
attend the conference.
For a member of the CCC, 5-6 meetings take place
during the two-year preparation period of the IAC,
and for representatives sitting on programme or track
committees 4. Individuals applying for these positions
need to have the support of the organisation or network
they work for, and for this work to be part considered
of their remit. Even under these circumstances, positive
women sitting on the committees have found themselves
at sea among more experienced or ‘in-the-know’ others,
feeling isolated and voiceless. One ICW member who
sat on the leadership committee reported that it was easy
to feel ‘overpowered’ by committee members with more
experiences, and that women’s issues tended to be the
last to be considered.
Committee participants and chairs need to feel
confident that they have the backing of their constituency
behind them, yet broad consultation – especially at an
international level – within positive people’s networks
can prove financially and logistically beyond the reach
of the organisations or networks sending representatives
to the table. Decisions are made on the spot and at
high speed, and for those who are not ready with
their constituents’ needs and recommendations, the
opportunity to influence programmes, sessions and key
themes and messages is quickly lost.
Being on the committee for Track D meant that
I was able to appoint various positive women to
chair or present on various sessions; and even to
create sessions (including two non-abstract driven
sessions – one on social reproduction and one on
conflict and HIV) which included positive women.
[HIV positive woman, Mexico City Conference
Delegate]
…positive women sitting on the
committees have found themselves
at sea among more experienced or
‘in-the-know’ others, feeling isolated
and voiceless…
There is always scope for improvement in the
way we do things. Often our involvements in this
mechanism are not well planned and do not reflect
in our work plan or sometimes we underestimate
our role and the time commitment involved. My
impact could have been greater if I have had
enough time to consult other Positive women to
enhance the processes- often these meetings are
held in rush and do not give us adequate time to
consult others…this is frustrating at times…lack of
adequate or appropriate mechanisms to consult is
also an issue for us. [HIV positive woman, Mexico
City Conference Delegate]
In 2006, following the 16th IAC, held in Toronto,
Canada, the structure of the CCC was changed so that,
whereas in the past, the two main international networks
of HIV positive people (GNP+ and ICW), and ICASO,
an international network of AIDS service organisations
had held a seat each on the CCC, from now on it was
agreed that they would only hold two between them, of
which the two positive people’s networks would share
one, to allow for more civil society participation from
other organisations.
The decision that ICW and GNP+ should share
a seat was taken…on March 6, 2006. That was
after the Future Direction consultation where
most stakeholders that had an opinion on the
issue – especially NGOs and activists – thought
65
Comment/Making a point
September/November 2008 ALQ
that it shouldn’t be the same three civil society
partners for all conferences. The conclusion of
that consultation, which all international partners
agreed on, was to let two new Civil Society partners
in as partners4 and keep the three old ones on two
seats. [Member of the IAS]
…the community has unwittingly
extracted itself from the conference
proper, and is now becoming
confined to the Global Village, where
there is also a danger of its
becoming ‘ghettoised’…
Though this decision was approved by members
of the CCC including ICW, the ICW representative
states that to retain any involvement at co-organiser
level ‘there really was no choice in the matter’. From
2006 to the Mexico City conference in 2008, ICW and
GNP+ therefore shared a seat on the CCC whereas in
previous years they had each occupied their own seat.
The arrangement remains the same with one of the two
civil society partners rotating on and off the CCC, every
other conference, (the Caribbean Drug and Alcohol
network replacing the Chiang Mai-based Asia Harm
Reduction Network post Mexico City), and the two
positive networks sharing the one seat from now until
Vienna (2010). Thereafter, the future involvement of the
international positive networks in the coordination of the
IAC remains to be seen.
Many positive activists feel that this move
undermines the GIPA principle and reduces rather than
enables the participation of men and women living
with HIV. For ICW, this decision has impacted on our
ability to influence the conference in a number of ways.
Primarily having only half a vote meant that ICW has
needed to shout even louder than ever to be heard.
This meant that ICW nominations or votes (e.g., for
programming committee chairs/members) and priority
areas for the conference agenda carried less weight.
Next, the IAS awarded ICW half the amount of funding
to bring members, staff and activists to the conference
than we had received in previous years, with the result
that ICW was only able to support six women to attend
the Mexico City conference, and had fewer available
resources to allocate to communications and materials
development and distribution both prior to and during
the conference.
ICW’s lack of influence on the Conference
Coordinating Committee and the apparent
squeezing of positive people’s organisations on
that committee [has meant that] ICW did not have
enough funds to get people to the conference.
[HIV positive woman, Mexico City Conference
Delegate]
The IAS has limited PWAs involvement in the IAC
at the top: on the CCC our vote was cut in half and
resources that used to be shared with us are no
longer shared. [HIV positive woman, Mexico City
Conference Delegate]
Conference or Global Village?
There is the beginning of a sense that the community
is being side-lined, especially with the separation of the
Global Village space, and a greater interest from the IAS
in the scientific and leadership tracks. Since Durban in
2000, the creation and growth of the Global Village as a
‘community’ space – both in the sense of its accessibility
to the local community, and in the sense of a space
for discussing issues pertaining to the people living
with HIV community – has attracted rights activists
and more controversial and rights-focused topics, than
the main conference. Many NGOs, community-based
organisations, networks and ‘identity’ groups have found
that the Global Village provides a more inclusive and
accepting space in which to organise, and to give voice
to the experiences, realities and aspirations of specific
groups, where these have traditionally been missing
from the main conference. To an increasing extent these
organisations and activists have focused attention and
energies on the Global Village, rather than the main
66Comment/Making a
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ALQ September/November 2008
conference forum. However, it is beginning to be felt
that the community has unwittingly extracted itself from
the conference proper, and is now becoming confined
to the Global Village, where there is also a danger of its
becoming ‘ghettoised’.
…[t]he GV is becoming more intentionally
programmed, though this carries both benefits and
drawbacks. On the one hand, it is a very vibrant
and well-programmed space, but as it becomes
that, it also runs the risk of functioning as a parallel
conference – making it, perhaps, easier to direct
some kinds of conversations to the GV, when those
should be reaching the entire AIDS conference
audience. [Mexico City Conference Delegate]
…there is a need…to ensure that
the Community, Leadership and
Scientific programmes speak to
each other and develop united
rather than separate responses
to emerging themes…
There is need to ensure greater interlinking, dialogue
and reflection of issues between the different tracks and
better communication between and among networks of
people living with HIV and their supporters where they
have members sitting on different track committees to
ensure that the Community, Leadership and Scientific
programmes speak to each other and develop united
rather than separate responses to emerging themes and
priorities. If the Community track continues to be –
or be perceived to be – located within an increasingly
separated-off Global Village area, there is a danger of
community issues being (seen as) completely de-linked
from those pertaining to the leadership and scientific
tracks.
The IAC is a well-oiled machine. As the IAC is now
run by the IAS, which is a professional organization
for Researchers, Scientist and Doctors it is
definitely biased to serve that constituency and has
set up structures, systems, and processes to keep
community at bay. [HIV positive woman, Mexico
City Conference Delegate]
There is no longer any tension between community
and science – the cord has been cut between them.
[HIV positive woman, Mexico City Conference
Delegate]
Related to this is the attitude and political will of
the conference’s host country government. Community
members of the host country/city are eligible to take part
in the conference on the same terms as everyone else –
in other words they have to pay what is, for most people,
a prohibitively high registration fee (of approximately
$800 US). Entrance to the Global Village, however,
is free. The Global Village plays an important role in
bringing to the host community elements of the IAC,
yet increasingly, rather than providing a reflection of
the IAC as a whole, the Global Village constitutes only
the ‘Community’ programme and this is played out in
competition with cultural and performance sessions
meaning that the speakers taking part in global village
dialogue sessions often have to fight with rock bands
to be heard, while the ‘serious’ sessions in the main
conference are free to take place undisturbed.
From the evaluations that we collected, the most
important problem was noise – we would suggest
either programming ‘quiet times’ in the GV or
exploring with hosts of zones and booths what they
want to do, so that you can place groups who want
to hold dialogues and people who want to have
music all the time far away from each other.
Another option would be to restrict sound
equipment in the GV. At the very least some kind of
noise guidelines should be provided to participants.
[Mexico City Conference Delegate]
Government’ lack of commitment to ensuring the
participation of more PLHIV [is the main barrier
to GIPA]. Another barrier is the low number of
scholarships that were awarded to the community
sector and the lack of local participation, since
in this case the local community had to pay
67
Comment/Making a point
September/November 2008 ALQ
their registration at the same price as other
participants. I think this shows lack of strategic
vision from the conference organizers and
host country, since more people from the local
community would have participated and this
would have value added for the host country.
[HIV positive woman, Mexico City Conference
Delegate]
Recommendations for increasing the
visibility, capacity and meaningful
involvement of HIV positive women
in the IAC
Outreach/pre-conference support
• The IAS can increase their support to ICW and
other HIV positive women’s networks, so they can
work with HIV positive women at country level from
an early stage in the conference preparations. This
can ensure that HIV positive women are involved by
adopting the following measures:
They5 should first work with women in the country.
ICW representatives should do this work, with
logistical and economic help.
…the real experiences and activities
of positive women featured last
– after all the other speakers. This
could come across as tokenistic…
There should be a one year campaign before the
conference to motivate women and to apply and
start fundraising early for attendance costs.
o Identifying and preparing messages that they
want to be heard at the conference;
o Identifying and mobilising representatives
of their networks to attend and are supported
to participate in sessions, e.g., registering for
the conference, writing abstracts, preparing
speeches, linking with international NGOs.
Maybe, ask within your network, if any women
know any influential women living with HIV, so that
these individual(s) can attend the next conference.
People have a tendency to listen when they know
the person or feel as though they know the person.
We have to feel a personal connection with the
speakers.
o Helping networks consult with their members
to ensure that their voices are fed into
developing the conference content, feedback
to their membership the important issues
that were presented at the conference and to
independently monitor MIWA.
Resources need to be targeted to allow
greater outreach to HIV positive women from the
grassroots, from marginalised groups, such as
young HIV positive women, injecting drug users
and sex workers and from harder to reach places.
Conference attendance
• A greater number of scholarships must be offered
to HIV positive women, especially HIV positive
women from marginalised groups.
• The IAS could help to source alternative resources
available to HIV positive women and men who do
not receive a scholarship.
• The registration process needs to be simplified and
expanded so that more than just internet technology
can be used to register (e.g., SMS messaging; phone
and written registration); and stagger abstract,
scholarship and early registration dates so that
applicants can find out earlier whether or not they
have been accepted for scholarships – early enough
to still meet early-bird registration deadlines or
source alternative funding.
• The IAS, CCC members and other civil society
organisations need to work with positive networks
at international, regional and national levels to
encourage positive women and men to register
early.
Speakers/sessions/tracks
• The IAS can give greater support to ICW to identify
and support HIV positive women speakers.
68Comment/Making a
point
ALQ September/November 2008
69
Comment/Making a point
September/November 2008 ALQ
Since 1855, the YWCA has been at the forefront of
empowering women and girls who advocate for
their rights and lead social, political, economic and civic
change. Today the YWCA reaches more than 25 million
women and girls in 125 countries, providing them
with the space and skills to develop leadership for the
benefit of entire communities. The YWCA’s purpose is to
develop the leadership of women and girls around the
world to achieve human rights, health, security, dignity,
freedom, justice and peace for all people. In
the early 1990s, the World YWCA began responding to
HIV and AIDS, recognising the potential to affect change
as one of the largest organisations for women and girls
worldwide. At the heart of the World YWCA’s global
strategy is to mobilise the leadership of women in local
villages and communities in response to HIV and AIDS.
With a membership and outreach of millions of women
and girls, this is where the YWCA makes the greatest
impact in responding to the needs of people infected
and affected, and in halting infection rates.
The World YWCA began a fruitful partnership with
ICW in 2003, which has brought an unprecedented
scope to ICW’s work, initiated through a series of
internships at the World YWCA head office in Geneva
and at ICW’s International Support Office in London
and the East Africa Regional Office in Kampala. In 2007,
the World YWCA held a ground-breaking International
Women’s Summit on Women’s Leadership on HIV and
AIDS, including a one-day Positive Women’s Forum
in partnership and co-organised by ICW which was
exclusively for HIV positive women, with the result
that HIV positive women made up approximately a
quarter of the total participants in the Summit. The
World YWCA and ICW have continued to work in close
partnership through their involvement in the CCC and
programming committees for AIDS 2008, strengthening
each other’s ability to influence the conference
programme and ensure that themes affecting women,
young women and HIV positive women in particular
were captured in the conference agenda.
ATHENA is a network of individuals and
organisations including activists, people living
with HIV networks, NGOs, CSOs, community based
organisations, academics and others with an interest
in promoting the sexual and reproductive health and
rights of women (and men) living with HIV; linking the
gender, human rights, SRHR, and HIV communities; and
providing a platform for HIV positive women’s voices.
The network was born out of the Mujeres Adelante
movement of positive women and their supporters
at International AIDS Conferences, starting at Durban
in 2000. Amongst other on-going work in raising and
advocating around SRHR and HIV/AIDS issues, the
IAC remains an important site of ATHENA activity and
activism. Since the Toronto conference in 2006, much
of this work has been brought together in the nexus
of the Women’s Networking Zone (WNZ). Located
in the Global Village, the WNZ represents a flexible
partnership of global and local women’s organisations,
some of whose participants come together for the
specific event, while others form the corner stones of
the ATHENA network and help to link one conference
to another through, and in addition to, work that takes
place in between. The WNZ creates a space for women,
and in particular women living with HIV, to caucus and
dialogue amongst themselves and with others, but in
the knowledge that this is our space; to bring to light
emerging issues, share cross regional dialogues, move
forward discussions about contentious issues, and to
apply an experiential and feminist/gender analysis to
mainstream responses to the pandemic, the impact
of which, on the lives of actual women, especially
positive women, often go overlooked, due to their
‘common sense’ public health appeal. The form and
content of the WNZ is driven by HIV positive women
through local and international networks, and priority
is given in programming to sessions put forward by
positive women’s groups, or issues nominated or
supported by positive women. In the 2008 WNZ
The World YW CA and ATHENA
continued overleaf
• Submissions by positive women and men, or
positive people’s networks, should be a criterion in
abstract reviews.
• Make the involvement of HIV positive women (or
men) speakers and/or facilitators a criterion for all
plenary- and non-abstract-driven sessions.
• Make sure that positive women (or men) speak first
in a session, not last.
In some of the sessions I attended, the real
experiences and activities of positive women
featured last – after all the other speakers.
This could come across as tokenistic. The same
happened with Latin Americans – they were the
last speakers. Conference organisers should
ensure they are the FIRST speakers (while everyone
is awake and alert)! Their contributions must be
valued because after the conference, they are the
ones heading back to support peers and lead in
responding to the epidemic in their communities.
• Request that all keynote speakers are to apply a
gender analysis to their presentation.
If the issues they are addressing are different
for women and men, this should be presented
as standard.
• Have a (fourth) conference track dedicated to the
life experiences of HIV positive people.
• Within the rubric of existing tracks, ensure dedicated
inclusion of specific issues which are of particular
relevance to the lives of HIV positive people (and
positive people’s perspectives on these areas), for
example, the burden of care and criminalisation.
CCC and PCs
• More HIV positive women on non-community
tracks and programmes (especially science) and
better strategising between them and with HIV
positive women’s networks, starting earlier in the
lead-up to each conference.
• Support for HIV positive women on all tracks
and programmes, to develop a positive women’s
proposal addressing involvement and focus for each
part of the conference.
• Support for HIV positive women on all tracks
70Comment/Making a
point
ALQ September/November 2008
75% of the sessions included at least one positive
woman speaker.
This year for the first time ATHENA played
a yet more influential role with regard to the
organising and programming of the IAC. The World
YWCA invited ATHENA to be part of their World
YWCA Reference Group for AIDS 2008. The World
YWCA was able to engage more substantively
by having this reference group, which was made
up of 6 different organisations .Through ICW and
the World YWCA, and the co-chairs, ATHENA was
able to provide a broader-based constituency
to support the role of the CCC representatives,
provide nominations for chairs of other track and
programming committees to the World YWCA,
and network to create alliances among other
programme and track committee members. This
was especially useful as the process of developing
the agenda, choosing non-abstract-driven sessions
and nominating chairs for abstract driven sessions
unwound. The position of a CCC representative
can be an isolating and disempowering one
for women (and men) who lack the support of
a broader constituency. At the same time, the
reference groups allowed for greater accountability
and transparency on the part of the individual
sitting on the committee. This model also allowed
positive women to move beyond identity politics
towards an involvement based on their skills
and knowledge, as well as that of other women,
not necessarily living with HIV, by creating new
alliances of strong women with specific areas of
knowledge and expertise that includes the positive
women’s experience. Even with this successful
model for collaboration, the need for the spaces
positive women have carved out for themselves
over the years remains critical and it is imperative
to respect the history of these spaces, as well as
their on-going use and value, and to ensure that
they are not swallowed up by a more collaborative
model of participation.
and programmes via reference groups with strong
positive network representation to ensure broader
constituency participation
Additional measures to ensure that the
conferences increase the visibility of HIV
positive women and their issues
• A concerted effort needs to be made to increasing
the links and create coherence between the global
village and the main conference and different parts
of the conference as a whole, both through ensuring
that mechanisms exist for close dialogue between
the different track committees, such that there
is cohesion between the three programme tracks
(Community, Leadership and Scientific), and that
the coordinators of the Global Village are also more
formally linked in to the programme tracks.
…a conspicuous need
to create spaces for new
and young HIV positive
women leaders…
• Hold an HIV positive women’s pre-conference or
session, and ensure that information from such
events is disseminated through to conference and to
other delegates.
I think that conference organisers could make
one roundtable with positive women to express
their hopes, sorrows or expressions of love; then
to share these feelings with other participants.
• Provide HIV positive women only rest spaces.
• Profile HIV positive women and men in the
conference newspaper, instead of focusing on the
‘big names’. The paper should also feature the work
and views of HIV positive women’s networks.
In the newspaper that was distributed, the
stories were of key figures at the conference
or generic feedback from certain sessions. It
would be great to profile stories of positive
women in the magazine to hear about what is
really happening on the ground (we’ll probably
learn that positive women are the most active
in supporting their families and communities to
respond to the epidemic).
Evaluation of the conference
• Include gender and positive involvement as
indicators in the IAC evaluation. For example,
all information about participation needs to be
disaggregated, and, where possible, disaggregated
by HIV status as well (number of scholarships,
attendees, speakers/facilitators in sessions, positive
women on CCCs)
• Conduct qualitative interviews with HIV positive
women attendees (and positive women who tried
and failed to attend) about their experiences of the
IAC.
• Include gender and positive involvement as
indicators in the IAC evaluation.
Involve networks, such as ICW in key roles in
organising the conference and monitoring the
MIWA commitments.
FOOTNOTES:
1. Greater Involvement of People Living with HIV (GIPA).
2. Meaningful Involvement of People Living with HIV (MIPA).
3. The scholarship budget for Africa was 25% of the whole scholarship
budget – a disproportionately low quota given the high prevalence
of HIV in sub-Saharan Africa. ICW heard that African women were
angry at how badly represented they were at this year’s conference
and at how their issues were represented by others speaking on their
behalf (personal communications – ICW conference delegate)
4. ATHENA, International Women’s Health Coalition, Women Wont
Wait, Foundation for Studies and Research on Women, Ecumenical
Advocacy Alliance, Youth Coalition.
5. In 2006. these were the World YWCA and the Asian Harm
Reduction Network (AHRN). For the next two IACs, the Caribbean
Drug and Alcohol Research Institute will take the place of the
AHRN; the World YWCA will sit on the CCC for the second time
in the lead up to Vienna 2010 in addition to the IAS, ICASO, and
the shared GNP+/ ICW seat. After Vienna the World YWCA will be
rotated off the committee.
6. Italics in this section indicate direct quotes from ICW’s
MIWA report card, distributed at and following the 2008 IAC in
Mexico City
Luisa Orza is the Monitoring and Evaluation
Officer at ICW. For more information
and/or comments, please contact her
at luisa.orza@gmail.com.
71
Comment/Making a point
September/November 2008 ALQ
Responses to HIV should be based on evidence and
human rights, not fear and stigma against people
living with HIV. [Craig McClure]
Responding to legislative trends towards the
criminalisation of HIV transmission, a broad coalition
of AIDS organisations have released the statement –
10 Reason to Oppose the Criminalisation of HIV
Exposure or Transmission – in December 2008. The
‘10 Reasons’ emphasise various human rights and
gender implications of criminalising the transmission of,
and exposure to HIV, including deterring people from
accessing HIV prevention, testing, treatment, care
and support services; increasing HIV-related stigma,
discrimination and violation of rights; as well as the fact
that women are more likely to be prosecuted.
Criminalising HIV transmission will backfire and
harm the very people it is intended to protect…the
most vulnerable will surely be prosecuted, especially
women who are routinely blamed for bringing HIV
into sexual relationships. [Jonathan Cohen, Open
Society Institute]
Instead of oppressing women with criminal laws,
governments should be passing laws that protect
women from violence and theft of their property…
women deserve real justice against gender-based
violence and coerced sex, not criminal laws that will
further victimise them. [Michaela Clayton, ARASA]
The ‘10 Reasons’ also highlight the potential losses
for both public health and human rights gains, due to
the passing and application of laws criminalising HIV
exposure and transmission.
Criminalisation will impede our efforts to get HIV
testing and treatment to those who need it most.
[Craig McClure, IAS]
The document also stresses the fact that there is no
evidence that criminalising HIV exposure and transmission
will, in fact, reduce new infections and/or decrease
women’s HIV risks and vulnerabilities – thus, it is less than
likely that these legislative trends will have any significant
impact on halting the HIV and AIDS pandemics.
The 10 reasons to oppose the criminalisation of HIV
exposure or transmission are:
1. Criminalising HIV transmission is justified only
when individuals purposely or maliciously transmit
HIV with the intent to harm others. In these rare
cases, existing laws can and should be used, rather
than passing HIV-specific laws.
2. Applying criminal law to HIV exposure or
transmission does not reduce the spread of HIV.
3. Applying criminal law to HIV exposure or
transmission undermines HIV prevention efforts.
4. Applying criminal law to HIV exposure or
transmission promotes fear and stigma.
5. Instead of providing justice to women, applying
criminal law to HIV exposure or transmission
endangers and further oppresses them.
6. Laws criminalising HIV exposure or transmission
are drafted and applied too broadly, and often punish
behaviour that is not blameworthy.
7. Laws criminalising HIV exposure and transmission
are often applied unfairly, selectively and
ineffectively.
8. Laws criminalising HIV exposure and transmission
ignore the real challenges of HIV prevention.
9. Rather than introducing laws criminalising HIV
exposure and transmission, legislators must reform
laws that stand in the way of HIV prevention and
treatment.
10. Human rights responses to HIV are most effective.
* The full document is available at
www.aln.org/news or www.soros.org/health/10reasons.
10 Reasons to oppose the criminalisation of HIV exposure or transmission
ALQ September/November 2008
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We need supportive legislation,
not criminalisation…
10 Reasons to oppose the criminalisation of HIV exposure or transmission