Project Description

What’s inside:
Here SHE comes…
In Women’s Words:
A category of
intervention…
Women’s Realities:
Addressed as a
continuum…
Women’s Voices:
Women’s
reproductive
health In Latin
America
Special Report:
Voices need to
be heard…
In my opinion:
Collective
yearning…
In Focus…
Science advances become
real advances for women…1
This paper has two parts: first we
describe the exciting advances
in the science of HIV prevention
achieved over the past three
years; second, we turn to face
the future, and somewhat
surprisingly, we find ourselves
charting a new and different
direction.
Advances
Precisely one year ago at Vienna
we stood and cheered long and loud
the announcement that Tenofovir
1% gel, not exactly a microbicide
but an antiretroviral treatment, could
also act as a preventive against HIV,
if applied at the right dose and at
the right time in the right place.
In comparison to women using a
placebo gel, the use of Tenofovir
1% gel halved the number of
infections among the women who
used it correctly. And still, one year
later, we applaud this outstanding
potential. However we ask ourselves
now: Why only potential? Why is
this significant addition to HIV
prevention for women not yet
available and accessible? We will
consider this in the second part of
this paper.
The next important achievement
this year is the confirmation that
treatment reduces transmission
of HIV. It was shown recently, in
an international trial, that if an
infected woman or man is placed
on antiretroviral treatment and is
adherent to it, her or his partner
is virtually completely protected
from infection. Although this is
not a brand new finding, we hail
the widespread recognition of its
significance. For a woman, this
finding allows her to bear children
with an infected man, if she so
chooses, because she will not
be infected with insemination.
Similarly, should she herself be
infected and undergoing treatment,
she may also have sex with her
partner safely and conceive, should
she so wish. She will also be able to
protect her foetus and infant.
Further, we now know that if
a woman is tested at a prenatal
examination, and whatever the level
of her CD4 count, she is placed
immediately, on a full and lifelong
treatment regime of antiretrovirals,
not only will her health remain
protected, but so will that of the
infant. She can safely breast feed the
child, at first exclusively, and then
as long as she chooses, because she
will remain with an undetectable
viral load.
Both women who are uninfected
and those who are infected have
received great news. In addition, we
hope that women can reduce their
risk of infection if men themselves
acquire some protection. Controlled
trials of medical male circumcision
show that the procedure could raise
their protection against HIV for men
by perhaps more than one half. If
men follow this practice, before they
become infected, this could reduce
women’s rates of infection in the
long run.
New approaches based on
statistical models also give some
cause for optimism. The theory
dubbed ‘test and treat’ proposes
that if a far greater proportion of
people in a community volunteer
for HIV testing, and if those who
are discovered to be positive are
actively counselled, and assigned
to antiretroviral treatment earlier
in the disease than at present, then
the number of transmitters in the
community would be reduced. The
Mujeres Adelante 17 – 20 July 2011
Newsletter on women’s rights and HIV • IAS 2011• Rome
Zena Stein and Ida Susser
2 IAS 2011 Rome • 17 – 20 July idea is to coordinate treatment with
prevention and encourage optimal
approaches to each.
Three other trials have also made
the news. One is the IPREX trial,
which showed that prevention of
infection in men who have sex with
men was possible, if men take a
pill, which is also an antiretroviral.
The degree of protection (about half
among users) was similar to that of
the Tenofovir gel among women.
If men take this pill, bisexual men,
at least, will have fewer infections.
Women may eventually benefit
from this finding, because anything
that reduces infections among men
should eventually reduce the risk of
infection among women.
Less happily, a similar trial of the
same pill among women (the FEMPrEPStudy)
was stopped before
completion because of ‘futility’
(the statistical term to show it was
unlikely to work). This apparent
lack of protection is compatible
with biological awareness that the
anus, but not the vagina, would
accumulate in the drug with oral use.
One other important trial bridges
the gap from community to action.
NIMH Project Accept, working in
32 communities in Africa and Asia
showed that community–based
measures facilitating voluntary
HIV testing improved the proportion
of volunteers who underwent testing,
compared to clinic-based testing.
Future ‘combination’ studies
are planned, including testing,
access to care treatment, counselling
and prevention.
Questions and future
strategies for women
Despite these advances, HIV is
not yet controlled and/or conquered.
Hence the question arises, are we to
wait, passively, for another decade
of randomised controlled trials and
‘evidence-based’ findings? For how
long will the licensing procedures,
the manufacturing, packaging
and distribution problems hold up
access? Are there other ways
to put into effect more of what
we know?
One delaying action, against
which we continue to argue, as
we have over the past 12 months2,
is the failure to move from what
we do know to what we do not
know. This is best exemplified in
connection with Tenofovir gel. Thus,
we do know that perhaps half of
the women who were placed on the
gel were protected, but not why this
is only half, or if the explanation
is biologic or behavioural? For
instance, is it the nature of the virus
or the immunological response
of the woman to the virus in the
presence of the drug that determines
protection? Or, is it the distribution
of the drug in the vagina?
Alternatively, is the determination
of success behavioural: default or
variation in the women’s usage of
the gel or a decline in their use over
time? All these and other questions
have been raised.
One approach, supported by
many of the best-known and mostexperienced
workers in the field
of microbicide development, is to
repeat the trials. Certainly it has
been argued that regulating bodies
will demand these further trials,
before the gel can be licensed.
However, this is a political rather
than a scientific justification.
Should we allow political concerns
to override scientific and certainly
ethical issues? The view that
regulating bodies require further
randomised control trials (RCTs),
if it is true, has not yet, to our
knowledge, been actively and openly
challenged, despite the history and
successes of activism in the
HIV field. If, for instance, safety
against adverse events needs further
studies, then, as we urged elsewhere,
post-marketing observations
involving large numbers, should be
enforced. For really rare events, it is
the incidence of these events, rather
than the relative risk based on trials,
that will be informative.
In fact, many researchers hold
that, at this point, some randomised
control trials are both noninformative
and unethical. Answers
to some of the most pressing
questions as listed above will accrue
from studies of women using the
drug in one way or another – such as
less or more drug, different times, or
behavioural changes. RCTs, which
require women assigned to placebos,
are very limited in their flexibility
and are not helpful in answering
the next set of questions necessary
for women to benefit most from
current findings.
Is this good science? Is it
worthwhile expenditure? Is it
fair on the women concerned?
Are we delaying or forwarding
implementation? Are we, in
pursuit of so-called evidence base,
distorting the logic of the questions
to be answered?
We ask these questions in the
spirit of openness, respect and cooperation
that has characterised the
microbicide movement for nearly
two decades. There may be good
reasons for these steps that we
are here questioning, but it seems
appropriate to, raise these questions.
We, and others, strongly
recommend further research, but
urge that it conform to scientific and
ethical standards. We should not be
misled by political issues. We cannot
replace scientific questions with a
simple equation of ‘evidence-based’
with RCTs. Nor are RCTs always
the Gold Standard as the best choice
of method. This may depend upon
the particular question, which may
be local, regional or universal.
We are emphasising, here, local
initiatives which facilitate local
experiment and innovations. For
instance, given that: Tenofovir gel
will apparently protect only about
half of conscientious users, and we
do not yet know which half: not all
infected male partners will know their
status and be on appropriate treatment;
and very young women are at an
elevated risk, what should we do to
repair these gaps in the field?
…although this
is not a brand
new finding,
we hail the
widespread
recognition of its
significance…
…the idea is
to coordinate
treatment with
prevention and
encourage
optimal
approaches
to each…
…despite these
advances,
HIV is not yet
controlled and/or
conquered…
IAS 2011 Rome • 17 – 20 July 3
We here advocate local
community organisation perhaps led
by clinics and providers, perhaps by
women activists, perhaps mothers
and daughters, perhaps clubs. Their
role is to spread knowledge and
experience not only of what we have
summarised above, but also of what
women might use besides.
We also propose that other
barriers are likely to still be
important and likely to continue that
way, perhaps until and even after
we have a vaccine. For example
condoms: if all women used female
condoms or if all men always
used condoms sexual transmission
would disappear. Can the female
or the woman’s condom be more
widely used? Can negotiation
help, with male condoms? What
about alternative barriers, such as
the cervical cap, likely to protect
against chlamyidia and gonorrhoea,
HPV? Which methods, in which
communities, and, after what
instruction and encouragement,
would women learn and be enabled
to use these methods?
Would clinics acquire the
equipment, the training tools,
the encouragement to evaluate
preferences, regularity of use,
perhaps effects of female condoms,
male condoms and other barrier
methods? Implementation science
has begun to focus on managers
and providers. An informed army
of providers, skilled and trained
local community workers is
needed. Could a mobile group of
trainers travel and gain and transfer
experience? Would this be a better
way to spend funds than on future
trials of known ‘facts’ and the
repetition of ‘evidence base’ that is
now the pattern for funders, national
and private.
Of course, these approaches
are not mutually exclusive, but it
always seems easier nowadays to
acquire funding for larger, rather
than for smaller endeavours.
Although funders pay lip service
to action and advocacy they rarely
fund local examples of innovative
practice, imaginative and collective
endeavours. Further technical
advances like a widely effective
vaccine, may be decades away. In
the meantime, we have to work with
people, with what they believe and
know and how they can use these
concepts and facts.
Outcomes that may be more
durable in the long-term, like
overcoming stigma, might be
developed in schools and in women’s
clubs. Knowledge and understanding
at the people level may be where
HIV can be most effectively
prevented at present.
As this summary has outlined,
treatment and prevention are
intertwined and good treatment can
also be good prevention. However,
we need to work on the community
side for any of our scientific findings
to actually reduce infection and to
help people living with AIDS to
live full and healthy lives, with the
choice to bear and rear
healthy children.
1. For more information see
‘Ethics, Equity and Equipoise:
Are further placebo-controlled
trials of antiretrovirals to prevent
sexual transmission needed and
justifiable?’, Kuhn, L., Stein, Z. &
Susser, I. [accepted for publication
in the Lancet 2011, to be released
16 July]
2. Stein, S. & Susser, I. 2010.
‘Microbicide Success: New
opportunities for women’. Published
with responses from specialists
in the field. In: Special Issue of
ALQ/Mujeres Adelante, October
2010, pp.38-56 [www.aln.org.za];
Microbicide Success: Feminism is
Essential to Good Science. Athena
Network & AIDS Legal Network
[www.athenanetwork.org]
Zena is an epidemiologist and
Professor (Emerita) of Public Health
Psychiatry and Co-Director (Emerita)
at the HIV Centre at Columbia
University, and Ida is a Professor of
Anthropology at the City University
of New York Graduate Center and an
Adjunct Professor at the Department
of Socio-Medical Sciences, School
of Public Health, at Columbia
University. For more information:
susseris@gmail.com.
…the failure to
move from what
we do know to
what we do not
know…
…at this
point, some
randomised
control trials
are both
non-informative
and unethical…
In Women’s Words:
Sex workers experience debilitating stigma and discrimination that erode their ability to protect their health and
well-being. As a result of law and social practice, sex workers face difficulties accessing healthcare, housing, and
supplementary employment opportunities. They risk verbal, physical, and sexual abuse, arbitrary arrests, and harassment.
Stigma decreases their ability to seek protection from the courts or the police when they suffer from violence and
discrimination. HIV/AIDS programmes should teach sex workers about their legal and human rights towards a renewed
sense of dignity which will compel them to collectively demand justice and relief from discriminatory practices.
Programmes should promote acceptance of sex workers and people living with HIV/AIDS in media campaigns and
healthcare services. They should make efforts to propose an alternative to the morality framework through which sex work
is generally viewed. Furthermore, programmes should participate in debates regarding how laws against sex work obstruct
HIV prevention efforts. [India]
4 IAS 2011 Rome • 17 – 20 July I am extremely excited that the IAS
HIV Pathogenesis Conference in
Rome in July 2011 will provide
the context in which the
SHE Programme will be launched.
This is because Rome is not only
the city where I was born, but is
also where I was diagnosed HIV
positive over 14 years ago.
At the time of my diagnosis peer
support for women with HIV was not
available in Rome, and I had to go
through the most difficult times in
my life without access to any
psycho-social support.
Things changed for me when
I moved to London and I started
accessing peer support groups at
Positively Women, and then started
working for the organisation, which is
now known as Positively UK. I know,
because of the hundreds of women I
have supported for more than 10 years,
that peer support enables women with
HIV to regain their self-esteem and
confidence to be in control of their
health and ultimately of their lives. I
really hope that one day no woman
who gets diagnosed with HIV will
have to go through the terrible fear
and isolation that I experienced when
I received my diagnosis, and I believe
that the SHE resources can play an
important role in creating such a world.
Sadly, in Europe, the number of
women living with HIV is on the
rise.1 Despite improved long-term
treatment and prognosis, HIV remains
complex, imposing unique challenges
for women. Couple women’s social
vulnerability to HIV with a lack of
HIV programmes and resources that
address our specific needs, and many
women are left with an unaddressed
gap between diagnosis and effective,
informed healthcare.2
The SHE (Strong, HIV positive,
Empowered Women) programme is
designed to address this disparity and
bridge the knowledge gap between
physicians and women living with HIV
by providing resources, including a
toolkit to be used by women living with
HIV in a peer support setting, as well
as a website3 (www.shetoshe.com).
Women across Europe will be able to
access the site – on their own time,
at no cost, and with full assurance
of personal privacy. These resources
were developed by people living with
HIV in collaboration with healthcare
professionals and offer help to
overcome the daily obstacles women
with HIV may face.
The SHE programme is based on a
peer-support model. Obviously, I have
personally experienced huge gains
by accessing this kind of support;
moreover, research shows information
provided by peers is seen as particularly
credible and influential. Peer educators
also provide inspiring role models
to women living with HIV, while
personally benefiting from the process.4
Benefits for all participants include
Watch out Europe! Here SHE Comes…
The SHE Programme
…many women are left with
an unaddressed gap between
diagnosis and effective,
informed healthcare…
Silvia Petretti
IAS 2011 Rome • 17 – 20 July 5
enhanced self-esteem, increased sense
of empowerment, and being better
informed, resulting in greater skills
and self-confidence during clinician
consultations and therapy.
To support this model, the SHE
advisory board, which I co-chair with
Prof. Jane Anderson, will unveil a
practical, information-based toolkit
for use by peer-support volunteers
or workers in clinical settings. The
authors of the toolkit, all personally
impacted by HIV, specifically developed
this resource to be useful in real-life
situations and easy-to-understand, truly
addressing the unmet needs of women
living with HIV. The toolkit covers topics
such as diagnosis, disclosure, sex and
relationships, living well with HIV,
getting the most out of treatment, and
addressing human rights issues.
It also contains a section for health
care providers highlighting the value of
peer support and the SHE programme.5
Running parallel to the SHE patient
education programme is a scientific
advisory board of European healthcare
professionals committed to developing
best practices regarding management
and treatment for women living
with HIV.
Furthermore, the SHE programme
aims to engage policy makers to
consider the special issues confronting
women living with HIV, thereby
increasing awareness, understanding
and solidarity throughout Europe.
The SHE programme will be unveiled
at the IAS 2011. During the SHE launch
meeting, SHE authors, SHE programme
co-chairs, Prof. Jane Anderson and
myself, advisory board members
and ambassadors will conduct an
interactive session to train participants
on peer support best practices and
how to incorporate SHE tools
and resources.
1. WHO. December 2009. ‘Annual rate of newly
diagnosed HIV infections in Europe more
than doubled’. [www.euro.who.int/en/whatwe-
publish/information-for-the-media/
sections/press-releases/2009/12/annualrate-
of-newly-diagnosed-hiv-infections-ineurope-
more-than-doubled]
2. UNAIDS, UNFPA, UNIFEM. 2004. Women
and HIV/AIDS: Confronting the Crisis.
[www.genderandaids.org/downloads/
conference/308_filename_women_aids1.
pdf ]; WHO. Gender inequalities and HIV.
[www.who.int/gender/hiv_aids/en/]
3. This website address is to be confirmed.
4. van Uden-Kraan et al. 2008. ‘Empowering
processes and outcomes of participation
in online support groups’. Quality Health
Resources, 18; pp405-417.
5. The UK version of the toolkit will be available
at IAS 2011. Localised adaptations of this
toolkit will follow.
Silvia is the Co-Chair of the
SHE Programme and Community
Development Manager at Positively UK.
For more information:
spetretti@positivelyuk.org.
…bridge the knowledge gap
between physicians and
women living with HIV by
providing resources…
In Women’s Words:
Promotion of the sexual and reproductive rights of
women living with HIV is urgent, because the State
does not have a clear position. Women living with HIV
do not have clear guidance about their rights, nor do
they get full access to contraceptive methods. They
are guided to not have children and there is not a
comprehensive approach. [Latin America]
In Women’s Words:
HIV testing is not offered broadly in the maternal
and child health care environment, so most
women discover their HIV diagnosis when they or
their partners become ill with AIDS, or when a child
dies from AIDS. [Mexico]
6 IAS 2011 Rome • 17 – 20 July During February to April 2011, the ATHENA Network
and the Global Coalition on Women and AIDS
conducted a Virtual Consultation to provide a platform
for women’s voices in the lead-up to the High Level
Meeting on HIV and AIDS in June, 2011.1
Translated into nine languages, the virtual consultation enabled
800 women from 95 countries to voice their priorities for the
future of the HIV response, and to review progress made against
commitments of
key relevance to
women and girls
enshrined in the
2001 UNGASS
Declaration on
HIV and AIDS and
the 2006 Political
Commitment.
Through a team
of regional focal
points and technical
experts, the consultation reached out to women around the
world, including women living with HIV, young women, sex
workers, women who inject drugs, grassroots women, and other
key affected women, such as women in prison or detention
centres, indigenous and rural women, transgender
women, and lesbian, bisexual, and other women who have sex
with women.
Women’s priorities
Globally, the top priority for positive change towards achieving
health and rights for women and girls living with and affected by
HIV, as identified by the survey respondents was:
Inclusive and holistic prevention, treatment, care, and
support for women in all of their diversity: Increasing
access to and uptake of prevention and treatment services
(including nutrition) for women and girls outside of the
maternal and child health setting
Key components of this ask, distilled from the priorities
enumerated by survey respondents, include the following:
• Health services must be accessible, gender-sensitive,
non-discriminatory, and uphold confidentiality; and be
available for all women, regardless of age, HIV status,
sexual orientation, or socio-economic status.
• Promote the inclusion of women and girls in all their
diversity, such as those living in rural and hard-to-reach
areas, young women, women living with HIV, women
with disabilities, women in conflict areas, transgender
women, women who have sex with women, women
involved in sex work, refugees, women who use drugs,
and indigenous women.
• Promote youth participation, and youth-friendly
SRH/HIV services, in particular ensuring access to
non-judgmental services for young people.
• HIV prevention and access to HIV testing must be
available for all women, not only when they are
pregnant, but also throughout their life cycle.
• Expand gender-sensitive, non-discriminatory,
and supportive harm reduction and needle
exchange services.
• Promote comprehensive and integrated provision of
HIV and sexual and reproductive health services to
In Women’s Words:
Women as a category of intervention…?
Luisa Orza
IAS 2011 Rome • 17 – 20 July 7
allow all women and girls, including those living with
HIV and minors, to enjoy a safe and satisfying sex life,
free from violence and discrimination, and to decide
about the number and spacing of their children.
Most of the HIV prevention programmes are addressed to
reduce risk factors that increase the possibility of getting
HIV (number of sexual partners, use of condoms, etc).
Almost no HIV prevention or care programme is directed
to reduce the vulnerability conditions in which women
acquire HIV (poverty, violence, gender roles, lack of
education, lack of leadership, etc). [Latin America]
Positive women are not offered a comprehensive range of
family planning options, and are vulnerable to unwanted
pregnancy. [West and Central Africa]
In addition to asking women for their top priority issues, the
consultation utilised 10 mutually reinforcing building blocks to
review progress and take stock of issues affecting us in the context
of HIV, constituting core
elements of the HIV response
essential to achieving health
and rights for women and
girls. Moreover, it is clear
from the analysis that
particular attention needs
to be paid to women and
girls living with HIV, and
other key affected women
who frequently experience
further marginalisation as a
result of being criminalised,
stigmatised, or invisibilised
at community, institutional or
state levels.
Positive changes
It is important to note positive changes that have occurred
over the last 10 years, particularly in relation to access to
health services, including SRH services to women living
with HIV. Increased access to ART has clearly contributed
to an increase in the type of services available to women
living with HIV, particularly cervical cancer screening and
family planning methods available. [Asia and the Pacific]
The virtual consultation recognised that great strides have
been made over the past decade in responding to the HIV
pandemic, both in terms of bio-medical advances, and in terms of
acknowledgement of the need for evidence-based rights-driven
responses. These include recognising the importance of women’s
and girls’ sexual and reproductive health and rights, including for
those of us living with HIV. Prevention technologies, such as the
female condom, post-exposure-prophylaxis (PEP), microbicides,
pre-exposure prophylaxis (PREP), and treatment as prevention,
are critical tools towards advancing a sexual and reproductive
10 Building Blocks of the HIV Response
for Women, Girls, and Gender Equality
1. Meaningful involvement of women and girls living with and affected by HIV
2. Solidarity with women and girls living with and affected by HIV
3. Safety for all women and girls
4. Acceleration of gender equality through the HIV response
5. Integrated services, especially sexual and reproductive health and HIV
6. Sexual and reproductive health and rights of women living with HIV to
receive comprehensive perinatal care and to have children free of HIV
7. Women-centered HIV prevention technologies
8. Comprehensive sexuality education
9. Investment in care and caregivers
10. An HIV response that works for women and girls in all of our diversity
8 IAS 2011 Rome • 17 – 20 July rights agenda within the context of the HIV response. Similarly,
the huge scale-up of antiretroviral treatment, the WHO
four-pronged approach to prevention of vertical transmission,
and expanded understanding of a comprehensive and holistic care
package for people living with HIV has emphatically improved
the life chances and quality of life of many people living with
HIV around the world.
At the same time, however, responses to the consultation
reinforced the need for recognition that bio-medical advances
are not made within a vacuum. Our daily realities, and the
social context in which we live, intersect with the bio-medical
HIV response, and our ability to access and effectively utilise
prevention, treatment and care technologies. An effective HIV
response must look beyond a bio-medical response to address
structural inequalities through the promotion of rights, dignity
and meaningful involvement of women in all our diversity.
Prevention, treatment and care approaches need to take into
account the realities of our lives, including our ability to access
information and services; negotiate the effective and consistent
use of prevention technologies; and retain our human rights –
including our sexual and reproductive rights – and dignity.
Prevention technologies are useless if women do not
have the confidence and skills to negotiate them with
their partners. The lack of funding for women’s groups
means that women are often not well-informed on those
technologies. Women in prison, women who have sex with
women, and drug users are further
excluded. [UK]
Thirty years into the HIV and
AIDS pandemic, HIV-related stigma
remains a major barrier to achieving
universal access goals. This often
intersects with other forms of stigma
and discrimination – in some cases
reinforced or upheld by punitive laws
and criminalisation – based on our gender or gender identity, age,
race or ethnicity, sexual orientation, drug use, sex work, marital
status, (dis)ability, fertility, immigration, refugee or asylum
status, actual or previous detention, literacy, socio-economic
background, and domicile.
The denial of the existence of women who use injection
drugs, lesbian, bisexual women, women who sleep with
other women and transgender women means these groups’
issues are never looked into. [Zimbabwe]
Care and prevention services
are available through a few
high profile organisations
in Jamaica but funding
limits their access to major
towns, requiring perhaps
a high level of initiative
towards self-care outside
target populations. [Jamaica]
Women from rural areas are
doubly excluded. [Honduras]
HIV-related stigma and discrimination within the health services
– in particular with regard to the sexual and reproductive health
and rights of women living with HIV – continues to be a common
experience. Mandatory HIV testing for pregnant women; lack of
access to a full range of contraceptive information or choice for
women living with HIV; partial or inaccurate information about
conception, pregnancy and childbirth for women living with HIV;
involuntary disclosure as a result of the indiscretion of health
professionals; and coerced or forced sterilisation or abortion
all constitute violations of women’s sexual and reproductive
health rights.
Women who attend antenatal clinics are coerced to test
by being told it is a government requirement, and so they
…a result of being
criminalised,
stigmatised,
or invisibilised
at community,
institutional or
state levels…
…the consultation
reinforced the need
for recognition
that bio-medical
advances are not
made within a
vacuum…
IAS 2011 Rome • 17 – 20 July 9
must. My sister told me she was told the ‘president of the
republic’ demands all women attending antenatal clinic
must be tested. Women, who are poor, have not gone to
school or don’t know their rights, never ask questions
but succumb. While they sign consent, they have no other
choices. [Kenya]
Women with HIV who want to have children or to use
any family planning method other than sterilisation are
strongly questioned, stigmatised and discriminated.
[Dominican Republic]
Interface between violence and HIV
Over the last three decades, there has been a growing awareness,
understanding and outrage of the gender dimensions of the HIV
pandemic. And while resources are frequently still deflected away
from women, the HIV response has also created opportunities
for those on the margins to take the centre stage, and a dynamic
moment in which to advance a gender agenda.
Challenging social norms, standing up to the powerful
elite in the district – police, village panchayat leaders,
politicians and upper-caste village leaders has involved
developing a dynamic social discourse. At the state and
national level some success has been achieved in the
engagement with government and
non-government actors. Working with
networks of sex workers, women’s
groups, HIV/AIDS activists and
queer activists within the country and
outside has resulted in concrete gains.
This should be encouraged. [India]
Sadly, however, such opportunities
have remained isolated, piecemeal or
lacking in sustained investment. In
particular, greater attention is needed
around the interface between violence
against women and HIV, both as a
cause and consequence of
transmission. Violence against
women and girls (including against
those of us living with HIV) acts as
a powerful barrier to our accessing
and utilising HIV prevention,
treatment and care services in
complex ways, often encompassing
diverse forms of violence, which
play out in intimate, institutional and
structural spaces.
Women can access free condoms in care centres and testing
sites, but cannot request, let alone insist, on condom use
or other form of protection. If they refuse to have sex or
demand that a condom be used, they may risk suffering
violence because they are suspected of being unfaithful.
[Middle East and North Africa]
This calls for a new conceptualisation of the phenomenon
of violence against women living with HIV, occurring at the
nexus of multiple structural determinants, including (but not
limited to) gender inequality and HIV-related stigma and
discrimination. One of the ways in which violence against
women living with HIV can be differentiated from violence
against women is in the impact it has on a positive woman’s
ability to access and effectively utilise HIV-related prevention,
treatment, care and support services, programmes, medication
and technologies.
A woman living with HIV who is subjected to violence
of any kind is potentially a woman who abandons her
treatment and dies. [Argentina]
In countries where sex work is not legally recognised, the
rights of women who engage in sex work are automatically
…address
structural
inequalities through
the promotion
of rights, dignity
and meaningful
involvement of
women in all our
diversity…
…calls for a new
conceptualisation
of the phenomenon
of violence against
women living with
HIV, occurring
at the nexus of
multiple structural
determinants…
10 IAS 2011 Rome • 17 – 20 July eroded, and punitive laws and criminalisation of sex work
support broad-based stigma and discrimination, leaving sex
workers vulnerable to multiple abuses of rights. Similarly,
women who use drugs (in contexts of punitive drug policies)
and women in prison or facing deportation do not have
access to the same mechanisms of rights protection as other
women. Violence against women continues to be underpinned
by the belief – frequently internalised – that those against
whom violence is perpetrated must have done something to
deserve it.
Violence against women – including violence against women
living with HIV – needs to be recognised as a manifestation
of unequal gender relations, frequently intersecting with other
structural inequalities of power, and not as a series of isolated, if
coincidental, individual experiences.
Service linkages
In recent years, actors in the AIDS response, from community
groups to international policy developers, have increasingly
recognised the benefits of integrating
service integration, in terms of
providing efficient services, reducing
duplication of efforts, and ensuring
that key affected individuals and
populations do not ‘slip through the
net’ by focusing on one set of health
needs while overlooking another.
Often community driven in the first
instance, service linkages recognise
that people have multiple identities
and related health concerns, and
promote a holistic, rights-driven
approach to healthcare at all points
along the HIV prevention, treatment,
care and support continuum. However,
while many examples of good practice
exist, service linkages – particularly those which aim to address
the sexual and reproductive health and rights of marginalised and
key affected women –continue to remain the exception rather
than the norm.
Punitive models remain the norm addressing drug use
and sex work, and they don’t help prevent HIV, rather the
contrary. Sex work related services are not integrated at
all and drug use related services are rarely integrated.
Testing is available, but low education levels mean that
confidentiality is not widely understood and the promotion
of criminalisation of HIV transmission makes it dangerous
to know one’s status if one is sexually active and HIV+. This
is a deterrent to testing and care and treatment. [USA]
While prevention of vertical HIV transmission programmes
have frequently been held up as a standard of success in the HIV
response, the focus of such programmes often still focuses on
the health outcomes of the baby, rather than also promoting the
health, rights and dignity of mothers living with HIV. Even where
vertical transmission services are excellent for women who test
HIV positive during pregnancy, women do not always receive
on-going support to realise further fertility desires, or support
to live healthy and satisfying sexual and reproductive lives.
Service providers often discourage women living with HIV from
having more children, sometimes to the point of being put under
pressure to terminate further pregnancies, or strongly advised
to undergo sterilisation procedures. Access to comprehensive
antenatal services by key affected women remains low, including
indigenous women, women in prison, women living in poverty,
women who use drugs, women in sex work, lesbian, bisexual or
transgender women.
Especially when it comes to choices about family planning
and reproductive choices there is a huge lacuna. Women
are often forced to complete families with one child
only and those who need termination are often forced to
undergo sterilisation procedures along with this. [India]
…service linkages
recognise that
people have
multiple identities
and related
health concerns,
and promote a
holistic, rightsdriven
approach to
healthcare at all
points…
IAS 2011 Rome • 17 – 20 July 11
Overcoming challenges
It is only by investing in the leadership and ensuring the
meaningful involvement of women and girls – especially those of
us living with HIV and other key affected women – that we can
begin to overcome these challenges. Networks and organisations
of women living with HIV and other key affected populations
exist in all the regions and many are of the countries from which
women responded to the survey. Many
of these are involved in programmes,
and are active in areas, such as
information dissemination, treatment
literacy, care and support, and
advocacy. However, the involvement
of these networks and organisations,
and their representatives, at the policy
or decision-making level, or at the
level of research, clinical practice and
monitoring and evaluation, remains
inconsistent, tokenistic, last-minute,
or non-existent. Greater and more
meaningful participation remains
hampered by a range of practical
concerns and structural factors.
In general people living with HIV in my country are involved
in decision-making and prioritisation of key areas of the
fight against AIDS. However, women are found most often
in the role of carers and recipients of services, rather than
decision makers and actively involved in decision-making
… However, initiatives of support and sustainability for
people living with HIV have always been a great handicap
when limited financial resources, with the emergence of the
concept of volunteer indirectly imposed on people living
with HIV and less consideration given as a consultant
expert in their field of expertise. This should be reflected
in future priorities, where the role and expertise of people
living with HIV in general, and women living with HIV in
particular are recognised and rewarded; they will play a
key role if given the space and facilities. [Burundi]
As we gather in Rome for the 6th IAS Conference on HIV
Pathogenesis, Prevention and Treatment, it is vital that the words
of women and girls living with and affected by HIV are heard.
Let these words form the corner stone of constructive dialogue
towards building bridges and alliances across the biomedical, legal
and human rights, and grassroots and activist communities.
1. The full document can be accessed on www.wecareplus.net/
resources/InWomen%27sWordsFinal.pdf.
Luisa is a women’s rights and HIV activist and coordinator
of WNZ2011 in Rome on behalf of the ATHENA Network and
Salamander Trust. For more information: luisa.orza@gmail.com.
…greater and
more meaningful
participation
remains hampered
by a range of
practical concerns
and structural
factors…
In Women’s Words:
Most people, especially women and young girls, have little or no
knowledge about the basic facts of HIV infection, especially in
the rural areas where information is sometimes hard to get, and this
has resulted in women and girls falling vulnerable to HIV infection
on a daily basis. Educating these women on the basic facts about HIV
in the rural areas, will help to prevent new infections and eliminate
ignorance, which usually leads to vulnerability of HIV infection.
[West and Central Africa]
In Women’s Words:
Female condoms continue to be more expensive and
less readily available than male. Women living with
HIV outside of activist communities, or without good
access to support groups and information may not be
aware of the existence or development of new female
centred technologies, their implications, or the debates
around them. [North America and Western Europe]
12 IAS 2011 Rome • 17 – 20 July Women’s Realities…
Addressed as a continuim…
Violence against women living with HIV
Fiona Hale and MariJo Vazquez
in direct and tangible harm to HIV
positive women. But violence against
women living with HIV also takes a
more indirect form.
The use of discriminatory language;
legislation and policy, which is
developed without using the lenses
of gender and HIV status; clinical
trials, which do not adequately
respect women’s autonomy, humanity
and rights; the dominance of
Western scientific understandings
of ‘evidence’; institutional failure
to understand the realities of HIV
positive women’s experiences and
to create supportive environments
– these are equally damaging, and
create a structural and cultural climate
in which violence against women
living with HIV is accepted, to the
extent that it is not even recognised
for what it is.
Information on violence against
women living with HIV can be
The issue of violence against women
is one thing and against women living
with HIV is another. All the women
living with HIV in my organization
have been subjected to various forms
of violence before and after diagnosis,
from sexual violence, psychological,
economic to institutional violence.
The most important lesson for us is
that we are able to talk about this
issue and from identification [of it],
support each other and make joint
decisions to seek help and improve
our quality of life. A woman living
with HIV who is subjected to violence
of any kind is potentially a woman
who abandons her treatment and
dies. [Argentina]2
There is a growing awareness
of the link between HIV and
gender-based violence, and of the
importance of addressing violence
‘as an integral part of multisectoral
HIV responses’3.
Until recently, work linking
HIV and violence against women
focused on how violence negatively
impacts on HIV prevention. Current
definitions of gender-based violence
or violence against women do not
fully encapsulate HIV positive
women’s experiences of violence.
We propose a definition of violence
against women living with HIV as
…any act, structure or process in
which power is exerted in such a
way as to cause physical, sexual,
psychological, financial or legal
harm to women living with HIV.
This follows an understanding
of violence as something, which
is used to achieve and assert power
and control over others, and becomes
accepted (to greater or lesser degrees)
as part of normal social structures.
This structural violence manifests
itself as ‘disparate access to resources,
political power, education, health care,
and legal standing’4. It is reinforced
by cultural violence, or
…aspects of culture… – exemplified
by religion and ideology,
language and art, empirical
science and formal science …
– that can be used to justify or
legitimise direct or structural
violence5.
Global population surveys
indicate that between 15% and 71%
of women have been physically or
sexually assaulted by an intimate
partner at some time in their lives.6
A recent study7, using data from 96
countries, shows that intimate partner
violence doubles women’s risk of
contracting HIV.8
When intimate partner violence is
part of the backdrop to HIV, we can
assume it remains part of the story
after testing. Yet, this and the range
of other types of violence which HIV
positive women experience remain a
hidden phenomenon.
Eviction; partner violence; barring
women from seeing their children;
maltreatment by service providers;
police violence, abuse and extortion;
loss of livelihoods … these are all
avoidable, unnecessary, and result
…current
definitions of
gender-based
violence or
violence against
women do not
fully encapsulate
HIV positive
women’s
experiences of
violence…
IAS 2011 Rome • 17 – 20 July 13
facing pressure and questioning from family and others about
their feeding choices20.
Health services
Medical care can also be a setting where HIV positive women
experience violence, abuse and lack of respect. A recent UK
study carried out by Positively Women (now Positively UK)21
found that 60% of interviewees would not tell their doctor about
their HIV status, because of the fear of judgmental treatment or
breaches of confidentiality. Health services may be particularly
unwelcoming places for sex workers and women who use drugs.
Routine antenatal HIV testing can also be problematic. A US
study22 found that 35% of their sample of women testing positive
in pregnancy experienced discriminatory healthcare, compared to
none of the women sampled who tested negative in pregnancy.
HIV positive women may also face problems in the labour
ward. Studies in India and Nepal found that women were being
told to wait until all other women had been delivered: ‘If I touch
you and then I deliver other women’s children, the virus will be
transmitted to them. I just do not care what you go through’23.
Also in India and Nepal, HIV positive women attending
reproductive health services were pinched, punched and scolded
by health workers during procedures, because of their HIV
status.24 Five out of seven women interviewed in Delhi were
denied abortion or sterilisation services in government hospitals
because of their HIV status.25
On the other hand, there is evidence of HIV positive women
undergoing forced or coerced sterilisation and/or termination
of pregnancy, including evidence from Namibia, Thailand
and Chile.26
Addressing violence against
women living with HIV
There are many examples of HIV
positive women and their allies
organising to address violence
against women living with HIV.
The most interesting projects seek
to incorporate primary prevention
(preventing violence before it occurs),
as well as secondary prevention
(‘approaches that focus on the more
immediate responses to violence,
such as pre-hospital care, emergency
services or treatment for sexually
transmitted infections following
a rape’) and tertiary prevention
(‘approaches that focus on long-term
difficult to find. This is partly because
it is often placed under the headings
of stigma and discrimination, access
to services, HIV testing, sexual and
reproductive health, or adherence
to treatment. It may be framed as
a ‘lack’ of capacity, of access, or of
informed consent. The terminology
used, with its suggestion of technical
deficits, neutralises what are often
clear manifestations of structural,
cultural and/or direct violence against
women living with HIV.
The reinterpretation of violence
from the perspective of women
living with HIV proposed by
Nizarindandi Picasso9 of ICW Latina
considers structural, cultural and
direct violence and emphasises a lifecycle
approach, in which the different
forms of violence experienced by
women living with HIV throughout
their lives must be addressed as
a continuum.
Partner violence
I was taken to A&E [Accident and
Emergency] for head injuries after
he punched me and I passed out. I
could not tell anyone because he
kept threatening to tell friends and
family about my HIV status so I
remained with him and the abuse.
[Patience]10
Women with violent partners in
South Africa were more than 50%
more likely to be HIV positive than
other women11. In Tanzania, young
HIV positive women were 10 times
more likely to report partner violence
than young HIV negative women12,
and HIV positive women identified
domestic violence as ‘one of the most
prevalent problems linked to HIV’13.
A WHO study found that in the
USA, 20.5% of women living with
HIV reported physical abuse because
of their status, and in Kenya, 19%
of women reported partner violence
because of their HIV status.14
In a Zambian study, HIV positive
women with violent partners had
serious difficulties accessing and
adhering to HIV treatment because
of violence. Many women were
missing doses because of violence
from their partners, and then
facing judgemental treatment from
health workers who blamed them for
poor adherence.15
I started taking medication in
2006. My husband does not know.
I take the medicine out of a bottle
and put it in a plastic bag or in
a paracetamol box … Sometimes
I would miss a dose; he comes
back at 18.00 hrs, drunk, closes
the door and says, ‘Today you
are going to freak out’. He locks
me in, he beats me up and locks
me out of the house. .. I go to the
neighbours, if they have mercy
they will let me in, if not, I sleep
under a tree until tomorrow.
As a result of that I miss doses
sometimes. I feel very bad. I don’t
even feel like taking the medicine.
[Berta K., Lusaka]16
Partner violence may prevent HIV
positive women ‘from accessing
treatment, thus potentially leading
to infection of her children, death
herself, and/or orphan status for
her offspring’17.
Family/in-laws
In India, HIV positive women are
usually blamed for their husband’s
death and are often evicted from their
houses, with one study putting the
numbers of women experiencing this
as high as 91%.18
The family setting is also the
site of violence when it comes to
exclusive breastfeeding or avoidance
of breastfeeding19, with mothers
…different forms
of violence
experienced by
women living with
HIV throughout
their lives must be
addressed as a
continuum…
Partner Violence: Findings From a Voluntary Counseling and
Testing Clinic in Dar es Salaam, Tanzania’. In: Am J Public Health,
92 (8), pp1331-1337.
13. Murray et al. 2006. ‘Violence and abuse among HIV-infected
women and their children in Zambia: A qualitative study’. In: J
Nerv Ment Dis., 194 (8), pp610-615.
14. Nilo, A. 2008. Women, Violence and AIDS: Exploring Interfaces.
GESTOS, Recife, p29. [www.genderandaids.org/downloads/topics/
Women%20Violence%20and%20AIDS.pdf]
15. Human Rights Watch. 2007. Hidden in the Mealie Meal: Genderbased
abuses and women’s HIV treatment in Zambia. [www.unhcr.
org/refworld/docid/4768e]
16. Ibid.
17. Murray et al. 2006. ‘Violence and abuse among HIV-infected
women and their children in Zambia: A qualitative study’. In: J
Nerv Ment Dis., 194 (8), pp610-615.
18. NACO, cited by Development Connections. 2010. Global
Virtual Course on Empowerment, HIV and Violence against
Women: Moving Toward a Global Perspective, Locally Grounded.
Washington DC, DVCN.
19. Fletcher, F. E., Ndebele, P. & Kelley, M. C. 2008. ‘Infant feeding
and HIV in Sub-Saharan Africa: what lies beneath the dilemma?’.
In: Theoretical Medicine and Bioethics, 29 (5), pp307-330.
20. Doherty et al. 2006. ‘Effect of the HIV epidemic on infant feeding
in South Africa: “When they see me coming with the tins they
laugh at me”’. In: Bulletin of the World Health Organization, 84(2),
pp90-96; Rogers et al. 2006. ‘HIV-related knowledge, attitudes,
perceived benefits, and risks of HIV testing among pregnant
women in rural southern India’. In: Aids Patient Care and Stds,
20(11), pp803-811; Sibeko et al. 2009. ‘Mothers’ infant feeding
experiences: constraints and supports for optimal feeding in an
HIV-impacted urban community in South Africa’. In: Public Health
Nutrition, 12(11), pp1983-1990.
21. Petretti, S. 2009. ‘HIV stigma training for GPs and dentists’. In:
Sophia Forum Newsletter, 3, p4. [www.sophiaforum.net/resources/
SophiaNewsletter3Sept2009.pdf]
22. Lester et al. 1995. ‘The consequences of a positive prenatal
HIV antibody test for women’. In: Journal of Acquired Immune
Deficiency Syndromes and Human Retrovirology,10, pp341-349.
23. ICW. 2009. HIV positive women’s experiences of abortion services
in India: Interviews with HIV positive women and other key
informants. [www.icw.org/node/506]
24. ICW. 2009. HIV positive women’s experiences of abortion services
in Nepal: Interviews with HIV positive women and other key
informants. [www.icw.org/node/506]
25. Ibid.
26. Paxton et al. 2005. ‘AIDS-related discrimination in Asia’. In:
Aids Care:Psychological and Socio-Medical Aspects of AIDS/
HIV, 17(4), pp413-424; Gatsi, J. 2008. ‘Denying us the right
to reproduce: Forced and coerced sterilisation of HIV positive
women’. African Legal Quarterly, November/December. [www.
salamandertrust.net/resources/ALQDoubleEdition08Criminalisatio
n(2).pdf].
27. Dahlberg, L. L. & Krug, E. G. 2002. ‘Violence: A global public
health problem’. In: Krug et al. (ed.) World report on violence and
health. Geneva: World Health Organization, pp3-21.
28. WHO & London School of Hygiene and Tropical Medicine. 2010.
Preventing intimate partner and sexual violence against women:
taking action and generating evidence. Geneva: WHO. p7.
Fiona is a freelance consultant and Salamander Trust Associate
and MariJo is a former chair of ICW and a founding
member of the Athena Network. For more information:
fionaatlarge@yahoo.com.
care in the wake of violence, such as
rehabilitation and reintegration, and
attempt to lessen trauma or reduce
long-term disability associated
with violence’)27. This makes them
innovative: until recently, most
responses focused on secondary or
tertiary prevention.28
Addressing violence against
women living with HIV without
taking into account the wider
context in which this violence takes
place will only limit the extent to
which our solutions will address the
issue. Favouring expediency over
complexity can only give short-term
gains. It is vital that work to address
violence against women living with
HIV is linked to work to build and
strengthen communities. One can not
work without the other. But there is
not a one-size-fits-all approach. Any
project must start with community
dialogue if it is to successfully
address the issues and be owned by
those involved.
What next?
When we first talked about
gender-based violence, I thought
it was just that women were not
comfortable with talking because
it would entail admitting to abuse.
However when we introduced
the research on GBV and the
paper by Fiona and MariJo at
the start of the e-consultations,
women admitted that they had
not thought about it. They learn
to exist and survive, or have
even other women label them as
aggressive virago, man haters,
wicked, for not accepting the
norm. The process for change
has started and much work lies
ahead.
[Olive Edwards,
GIPA Facilitator]
1. This article is an excerpt from a
recent publication by the authors.
Hale, F. & Vazquez, M.J. 2011.
Violence Against Women Living
with HIV/AIDS: A Background
Paper. Development Connections
and the International Community of
Women living with HIV/AIDS (ICW
Global) with the support of UN
Women. [www.dvcn.org/content/
hiv_violence_against_women]
2. In Women’s Words. [www.
wecareplus.net/resources/
InWomen%27sWordsFinal.pdf]
3. UNAIDS. 2010. Agenda for
Accelerated Country Action for
Women, Gender Equality and HIV:
Operational plan for the UNAIDS
action framework: addressing
women, girls, gender equality and
HIV. p10. [http://data.unaids.org/
pub/Agenda/2010/20100226_
jc1794_agenda_for_accelerated_
country_action_en.pdf]
4. Farmer et al. 2006. ‘Structural
Violence and Clinical Medicine’.
In: PLoSMed, 3 (10), p3. [journal.
pmed.0030449]
5. Galtung, J. 1969. ‘Violence, Peace,
and Peace Research’. In: Journal of
Peace Research, 6 (3), pp167-191.
6. Garcia Moreno et al. 2006.
‘Prevalence of intimate partner
violence: findings from the WHO
multi-country study on women’s
health and domestic violence’. In:
The Lancet, 368 (9543), pp1260-
1269.
7. The study has not yet been
published: this is based on the
presentation at AIDS2010.
8. Welbourn, A. 2010. ‘Absence of
evidence does not mean evidence of
absence’. In: Open Democracy, July
23,2010. [www.opendemocracy.net/
alice-welbourn/absence-of-evidencedoesnot-
mean-evidence-of-absence]
9. Picasso, N. 2008. ‘Interpreting
VAW from the Experiences of
Women Living with HIV/AIDS’. In:
Connections, D. (ed.) The Multiple
Faces of the Intersections between
HIV and Violence Against Women.
Washington DC: Development
Connections (DVCN), pp22-27;
Picasso, N. 2008. ‘Reinterpreting
violence from the perspective
of women living with HIV’.
In: Luciano Ferdinand, D. (ed.)
A Manual for Integrating the
Programmes and Services of HIV
and Violence Against Women.
Washington DC: Development
Connections, UNIFEM, p13.
10. PozFem UK. 2008. Women, HIV and
Sexual Health in the UK. p5. [www.
poz-femuk.org/resources.html]
11. Dunkle et al. 2004. ‘Gender-based
violence, relationship power, and
risk of HIV infection in women
attending antenatal clinics in South
Africa’. In: The Lancet, 363 (9419),
pp1415-1421.
12. Maman et al. 2002. ‘HIV-Positive
Women Report More Lifetime
14 IAS 2011 Rome • 17 – 20 July
Introduction
The synergistic benefits of linking sexual
and reproductive health (SRH) and HIV
and the need to respond to the sexual and
reproductive health needs of women with
HIV were recognised almost twenty-years
ago1 and have been promoted by the
United Nations system and networks of
women living with HIV for over a decade.2
Yet, global monitoring demonstrates
insufficient progress. In 2008, a mere 21%
of pregnant women giving birth in lowand-
middle income countries were tested
for HIV, and only 45% of pregnant women
with HIV received antiretroviral treatment
to prevent vertical HIV transmission.3
Significant numbers of women with HIV
continue to report unmet needs for family
planning and
high rates of
unintended
pregnancies,4
as well as other
sexual and
reproductive
rights
violations.5 The
conversation
about women
with HIV’s right
to choose the
number and
spacing of their children through accessing
assisted reproduction and adoption
has barely begun in the Latin American
countries studied.6
This article explores the current state
of policy and practice, and some of the
barriers to the HIV and women’s health
movements in Latin America developing
a joint advocacy agenda focused on
achieving the UNGASS Declaration of
Commitment on HIV and AIDS and the
health-focused Millennium Development
Goals (MDGs): reducing child mortality
(MDG4), reducing maternal mortality and
achieving universal access to reproductive
health (MDG5), and halting and beginning
to reverse the spread of HIV and AIDS
(MDG6).
Methodology7
We reviewed reporting on the UNGASS
Declaration and the MDGs to assess
operational progress towards meeting
country commitments to prevent vertical
transmission of HIV and providing
reproductive and HIV healthcare services in
nine Latin American countries. We undertook
a content analysis of the current National
HIV and Reproductive Health Plans8, and
conducted in-depth, semi-structured
interviews with women with HIV, feminists
working in sexual and reproductive health,
national bureaucrats and United Nations
functionaries between September 2009
and March 2011 (n=78) in the three subregions:
North America (Mexico, n= 26);
Central America (El Salvador, Guatemala,
Honduras, Nicaragua, n=25); South America
(Bolivia, Colombia, Paraguay, Peru, n=27).
We validated our findings about barriers
to accessing vertical HIV prevention and
the availability of sexual and reproductive
health services with 130 activists in national
meetings with women leaders with HIV in El
Salvador (n=16); Guatemala (n=12), Honduras
(n=23), Nicaragua (n=18), and Mexico
(n=42), and at a forum with activists from
all sub-regions (n=19).9
Epidemiology
In Latin America, and in all of the countries
included in this analysis, the HIV epidemic
remains concentrated (less than 1%
prevalence among the general population
and more than 5% prevalence among
vulnerable populations, such as men who
have sex with men, injecting drug users, and
sex workers). However, the total proportion
of women with HIV in the region and in the
countries studied is significant: approximately
30% (550, 000) of the 1.6 million people with
HIV in the region are women, and there are
an estimated 180,000 women with HIV in the
countries analysed.10
Tamil Kendall, Eugenia López-Uribe, Gabriela García-Patiño Women’s Voices…
Universal access to reproductive health…
Gaps and opportunities for women in Latin America
IAS 2011 Rome • 17 – 20 July 15
…the region lacks
women-focused
HIV prevention
policies…
HIV Prevention
While only Guatemala and Bolivia fail
to mention a gender perspective in their
National HIV Plans, the region lacks womenfocused
HIV prevention policies, with the
exception of programmes for sex workers
and pregnant women. The few countries that
mention HIV prevention for women from the
general population (El Salvador, Honduras,
and Nicaragua) only consider women of
reproductive age in the context of perinatal
HIV prevention. National HIV Plans do not
define gender differentiated prevention
strategies for women from vulnerable
populations, women in stable relationships,
or women who experience gender violence,
despite international research indicating
that most women acquire HIV within
marriage and associating sexual and
physical intimate partner violence with
HIV infection.11 All of the countries have
legislation which addresses some aspects
of gender violence, but interviews indicate
that health services do not systematically
identify violence during prenatal care or as
a routine part of HIV care.
Only one country (Mexico) includes the
female condom in its National HIV Plan.
Honduras, Nicaragua and Peru are the
only countries which specifically mention
secondary
prevention
(positive
prevention) for
women with
HIV.
It is clear
that the HIV
prevention
needs of women
and girls are
not being
adequately
addressed,
even on paper.
16 IAS 2011 Rome • 17 – 20 July …it is clear that
the HIV prevention
needs of women
and girls are not
being adequately
addressed, even on
paper…
There is an urgent demand for specifically
tailored, gender-sensitive HIV prevention for
women throughout their lifespan, and not
solely in their reproductive role (pregnant
women) or when they are wrongly perceived
as representing a threat to public health (sex
workers). A human rights approach demands
HIV prevention to promote women’s
own health.
Preventing vertical HIV transmission
All of the National AIDS Programmes aim
to eliminate vertical (parent-to-child) HIV
transmission (100% coverage). According to
UNAIDS, all of the countries studied, except
Mexico, made significant improvements in
the delivery of antiretroviral treatment to
pregnant women with HIV between 2007
and 2009. Unfortunately, the lower range
of UNAIDS
estimates
indicate that
less than half of
women with HIV
in the countries
studied received
antiretrovirals
during
pregnancy
in 2009.
Stakeholders stated that pregnant women
with a confirmed HIV diagnosis receive
antiretrovirals, indicating that lack of HIV
testing during pregnancy remains an
important barrier to preventing vertical HIV
transmission.
Guidelines to offer HIV testing to pregnant
women exist in all the countries and half
of the countries (Colombia, El Salvador,
Honduras and Nicaragua) have guidelines
which make that offer obligatory; it is of
concern that two countries (Bolivia and
Peru) have made the HIV test obligatory for
pregnant women.
In practice, centralisation of services where
testing is offered, stock-outs of rapid tests
and reagents, and user fees for healthcare
services limit effective access to HIV testing
for women, during pregnancy and in general.
Limited knowledge of women’s vulnerability
to HIV and low risk perception by physicians
and women are additional barriers.
All of the countries have adequate clinical
guidelines for preventing vertical HIV
transmission (combination antiretroviral
therapy, breast milk substitution, and in most
cases, guidelines for caesarean delivery).
But in practice an enabling environment
which allows women with HIV to make
informed choices and implement them is
lacking. Guaranteed access to free breast
milk substitutes is not universal. Clinical
guidelines propose formula feeding without
ensuring counselling that addresses the
socio-economic and cultural realities that
can be barriers to breast milk substitution.
Infant-feeding counselling for women with
HIV needs to explore the relative risks and
benefits of breast and formula feeding,
and emphasise the need to avoid mixed
feeding.12 Women with HIV continue to be
denied programmed caesarean delivery by
healthcare providers who are not specialised
in HIV. Finally, only two countries (Mexico
and Peru) include the option of vaginal
delivery with a viral load below 1000 copies.
None of the countries have disseminated the
possibility for vaginal birth, among treatment
physicians or networks of women with
HIV, widely.
Sexual and reproductive health and rights
of women with HIV
Important gaps in achieving national and
international commitments to sexual and
reproductive health and rights persist, as
does the need to integrate HIV with sexual
and reproductive health services. Stigma
and discrimination, which deny the sexual
and reproductive life of women with HIV,
contribute to violations of the right to
decide about
the number
and spacing of
children and
thus prejudices
the sexual and
reproductive
health of positive
women.
Even though
half of the
countries
mention family planning for women with
HIV in relevant clinical guidelines, only one
(Nicaragua) considers contraceptive use by
women with HIV in the National HIV Plan.
According to the stakeholders consulted,
none of the countries offer comprehensive
family planning counselling as part of HIV
care. Assisted reproduction and adoption
are absent from all of the National HIV
Plans. Likewise, the diagnosis and treatment
of other sexually transmitted infections
(except syphilis to avoid congenital cases) is
overlooked, except in El Salvador
and Mexico.
IAS 2011 Rome • 17 – 20 July 17
…a human rights
approach demands
HIV prevention to
promote women’s
own health…
…but in practice
an enabling
environment which
allows women
with HIV to make
informed choices
and implement
them is lacking…
In practice, access to diagnosis and
treatment of sexually transmitted infections,
including regular pap smears, is unequal
between countries and across health service
delivery systems – access depends more
on the knowledge and commitment of the
treating physician, than on institutional or
country level policy.
The political context13
The multiple benefits of implementing
prevention of vertical HIV transmission
(providing women with HIV with a timely
diagnosis
and access
to treatment;
increasing
HIV-negative
women’s
awareness of HIV
and knowledge
about HIV
prevention;
potentially
providing timely
diagnosis to
male partners
and other children) and a comprehensive
conception of the sexual and reproductive
health needs and rights of women with HIV
are marginalised discourses among decisionmakers,
HIV activists and feminists working
on sexual and reproductive health in the
region. The narrow and divisive framing of
prevention of vertical HIV transmission in
terms of infant health versus women’s rights,
rather than promoting the health of women,
children and the community, and tensions
over funding between SRH and HIV civil
society, government programmes and UN
agencies are significant impediments to the
SRH/HIV integration agenda. International
reviews have vindicated the generally
positive effects of investments in HIV for
health systems and demonstrated positive
results of strengthening linkages between
SRH and HIV for the quality of service delivery,
and some initial cost-benefit analysis.14
Based on their lived experience, women
with HIV perceive SRH/HIV integration as
a priority, but have faced challenges in
attracting institutional support and political
priority from the HIV and women’s health
movements. Within networks of people with
HIV, different perceived needs and priorities
from the predominantly homosexual male
membership are barriers to prioritising
prevention of vertical HIV transmission
and SRH/HIV integration. While feminists,
including the authors, are working with
women with HIV at the country and regional
level, generally speaking these are recent
collaborations that in most cases are only
starting to generate an articulated advocacy
agenda. Identified barriers to collaboration
include the continued perception that
HIV is not an important women’s issue
among feminists, HIV-related stigma, class
differences, and lack of knowledge about
the international conferences that form
the backbone for the feminist SRH agenda
among women with HIV. One of the key
problems identified was that when feminists
did work on HIV, they frequently did so
without the meaningful involvement of
HIV positive women. The Greater Involvement
of People Living with HIV and AIDS (GIPA)
principle15 can be an effective antidote to
feminist perceptions of women with HIV as
’other‘ and broaden understandings of the
benefits of preventing vertical
HIV transmission and SRH/HIV integration.
Collaborative advocacy is necessary to
ensure that the new HIV and Reproductive
Health Plans written in the region include
primary HIV prevention for all women,
promote the sexual and reproductive rights
of women with HIV, and fully operationalise
programmes to prevent vertical
HIV transmission, while respecting women’s
rights, and to achieve the targets committed
to by country governments in the
Millennium Development Goals and
the June 2011 Political Declaration on
HIV and AIDS.
Recommendations
• Develop and implement specific
prevention campaigns for women
that recognise gender differences and
highlight women’s vulnerability to HIV
infection throughout the lifecycle, not
only during pregnancy.
• Guarantee access to free and voluntary
HIV testing as a routine part of prenatal
care by making the offer of HIV testing
with informed consent an obligation
for healthcare personnel.
• Update clinical guidelines and begin a
multisectoral dialogue on the benefits
of vaginal delivery when the viral
load of a pregnant woman with HIV is
below 1000 copies.
• Ensure comprehensive counselling
on infant feeding, which explores the
context of women’s lives and supports
them to make informed decisions
18 IAS 2011 Rome • 17 – 20 July …based on their
lived experience,
women with HIV
perceive SRH/HIV
integration as a
priority…
and to achieve exclusive formula or
breastfeeding.
• Create a favourable environment for
the exercise of reproductive rights by
women with HIV. Needed steps include
guaranteeing access to counselling
and a full range of appropriate
contraceptive methods in addition
to the condom (dual protection) for
women who do not want to become
pregnant. Women with HIV who want
a child need objective information
and medical interventions to permit
safe and healthy conception and
pregnancy, or if they prefer, support
to adopt.
• Guarantee diagnosis and treatment
of sexually transmitted infections,
including the Human Papilloma Virus
(HPV), as a routine part of HIV care.
• Systematically identify and respond to
gender violence during prenatal care,
HIV pre and post-test counselling, and
as an integral part of HIV care.
• Increase financing to support and
expand peer support and advocacy
by women with HIV to improve
implementation of perinatal HIV
prevention, sexual and reproductive
health, and women’s self-care before,
during, and after pregnancy.
• Carefully analyse mechanisms for
integrating HIV and sexual and
reproductive health services to ensure
that such efforts respond to health
system specificities and the sociocultural
context of each country.
• Guarantee the sustainability of
perinatal HIV prevention beyond the
current support received from the
Global Fund to Fight AIDS, Tuberculosis
and Malaria.
1. International Community of Women Living
with HIV/AIDS. 1992. Twelve Statements. [www.
icwglobal.org/en/twstatem.php]
2. UNFPA/UNAIDS. 2004. New York Call to
Commitment: Linking HIV/AIDS and Sexual and
Reproductive Health. [www.unfpa.org/upload/
lib_pub_file/321_filename_New%20York%20
Call%20to%20Commitment.pdf]; WHO/UNFPA.
2006. Glion Consultation on Strengthening
Linkages between Reproductive Health and HIV/
AIDS: Family Planning and HIV/AIDS in Women
and Children. [www.unfpa.org/webdav/site/
global/shared/documents/publications/2006/
glion_rhandhiv.pdf ]
3. WHO. 2010. PMTCT Strategic Vision 2010-2015.
Preventing-mother-to-child transmission of HIV to
reach the UNGASS and Millennium Development
Goals. Geneva, Switzerland: WHO, pp 8-9.
4. Adair, T. 2009. ‘Unmet need for contraception
among HIV-positive women in Lesotho and
implications for mother-to-child transmission’.
in: Journal of Biosocial Science 41, no.2, pp269-
278; Desgrees-Du-Lou et al. 2002. ‘Contraceptive
use, protected sexual intercourse and incidence
of pregnancies among African HIV-infected
women. DITRAME ANRS 049 Project, Abidjan
1995-2000’. In: International Journal of STD and
AIDS 13, no. 7, pp462-468; Nakayiwa et al. 2006.
‘Desire for Children and Pregnancy Risk Behavior
among HIV-Infected Men and Women in
Uganda’. In: AIDS Behavior, 10, suppl 1, pp 95-104.
5. Bell et al. 2007. ‘Perspectives and experiences of
women and men living with HIV and AIDS’. In:
Reproductive Health Matters, 15 suppl 29, pp113–
135; deBruyn, M. 2006. ‘Women, reproductive
rights, and HIV/AIDS: Issues on which research
and interventions are still needed’. In: Journal
of Health, Population, and Nutrition, 24, no.4,
pp413–425; Kendall, T. 2009. ‘Reproductive rights
violations reported by Mexican women with
HIV’. In: Health and Human Rights: An International
Journal, 11, no.2, pp79-89.
6. Kendall, T. 2011. Parenthood options: knowledge
of and access to assisted reproduction and
adoption for women with HIV in eight Latin
American countries, 6th IAS Conference on
Pathogenesis, Treatment and Prevention, Rome,
Italy, July 17-20, 2011.
7. This research was supported by the Pierre
Elliot Trudeau Foundation, a Vanier Canada
Graduate Scholarship from the Social Sciences
and Humanities Research Council of Canada,
the Ford Foundation, International Planned
Parenthood Federation-Western Hemisphere,
UNFPA-Latin America and Caribbean Regional
Office, UNIFEM-Regional Office for Mexico,
Central America, Cuba and the Dominican
Republic, and implemented in collaboration
with the International Community of Women
Living with HIV-AIDS in Latin America (ICWLatina).
The opinions expressed are those of the
authors.
8. Content analysis of National HIV and
Reproductive Health Plans, as well as the
relevant clinical guidelines and HIV-specific
legislation, for 9 countries (the period covered by
the National HIV Plan analysed is in parenthesis):
Bolivia (2006-2010), Colombia (2008-2011), El
Salvador (2005-2010), Guatemala (2006-2010),
Honduras (2008-2012), Mexico (2007-2012),
Nicaragua (2006-2010), Paraguay (2008-2012),
Peru (2007-2011).
9. The content analysis and interview guides
were constructed around the four prongs
of the WHO/UNFPA Glion consultation on
strengthening linkages between reproductive
health and HIV to respond to HIV among
women and children: primary prevention of HIV
infection in women; prevention of unintended
pregnancies in women living with HIV (which we
defined broadly in terms of services to promote
sexual and reproductive health); prevention of
vertical HIV transmission; and provision of care,
treatment and support for women living with
HIV and their families. Interviews also explored
the political context for SRH/HIV integration and
relationships between women with HIV and HIV
and feminist reproductive health organisations.
10. UNAIDS. (2010). Report on the Global AIDS
Epidemic, Annex 1: HIV and AIDS estimates
and data 2009 and 2001. [www.unaids.org/
documents/20101123_GlobalReport_Annexes1_
em.pdf ]
11. Dunkle et al. 2004. Gender based violence,
relationship power, and risk of HIV infection in
women attending antenatal clinics in South
Africa’. In: The Lancet, 363 (9419), pp1415-1421;
Silverman et al. 2008. ’Intimate partner violence
and HIV infection among married Indian women’.
In: JAMA, 300(6), pp703-710.
12. UNICEF. 2009. HIV and Infant Feeding. [www.
unicef.org/nutrition/index_24827.html]
13. Adapted and summarised from an article
by Tamil Kendall and Eugenia López-Uribe,
‘Improving the HIV response for women in Latin
America: Barriers to integrated advocacy for
sexual and reproductive health and rights’, Global
Health Governance 4, no.1 (November 2010).
14. WHO/UNFPA/IPPF/UNAIDS/UCSF. September
2009. Sexual and Reproductive Health
and HIV Linkages: Evidence Review and
recommendations. [http://data.unaids.org/pub/
Agenda/2009/2009_linkages_evidence_review_
en.pdf ]; WHO Maximizing Positive Synergies
Collaborative Group. 2009. ‘An assessment of
interactions between global health initiatives
and country health systems’. In: Lancet, 373
no.9681, pp 2137-2169.
15. UNAIDS. March 2007. UNAIDS Policy Brief: The
Greater Involvement of People Living with HIV
(GIPA). [http://data.unaids.org/pub/Report/2007/
JC1299-PolicyBrief-GIPA_en.pdf ]
Tamil is a Doctoral Candidate at the University
of British Columbia and the HIV Advisor
for Balance. Promoción para el desarrollo y
juventud, Mexico. Eugenia is the Executive
Director of Balance and Gabriela is the
Women and HIV Programme Officer. For more
information: tamilhiv@gmail.com.
IAS 2011 Rome • 17 – 20 July 19
20 IAS 2011 Rome • 17 – 20 July A growing body of evidence
indicates that criminalisation of
sex work is harmful to public health
efforts to prevent the spread of
HIV and other sexually transmitted
infections1. The African Sex Worker
Alliance (ASWA) commissioned
a study to document sex workers’
experiences of human rights
violations and barriers to accessing
healthcare in four African
countries; Kenya, South Africa,
Uganda and Zimbabwe.
In all of these countries some
aspects of sex work, if not all, are
criminalised, like in many other
African countries. In Kenya, selling
sex is penalised but not the purchase,
which means that sex workers
who are predominantly women are
criminalised and not their clients;
in South Africa, all aspects of sex
work, including selling, buying and
living off the proceeds of sex work,
are criminalised; in Uganda, selling
and living off the proceeds are
illegal but not the purchase of sex
work; and in Zimbabwe; solicitation
for the purpose of sex work is
criminalised. Sex workers are
criminalised in all these countries.
Since sex work is criminalised
many sex workers face gross human
rights violations, discrimination
and violence, and experience a
number of challenges and barriers
when trying to access services,
especially health services at state
facilities. These violations are not
unique to Africa, but to countries
where sex work is criminalised, as
the industry and those operating in
it are stigmatised and discriminated
against, due to the moralistic views
that society has and the fact that the
law renders sex workers ‘criminal’.
Due to the lack of recognition
of sex work and sex workers’
rights, many sex workers across
the globe face numerous human
rights violations from a range of
actors, including the police who
are meant to serve and protect;
health care workers who are
meant to provide judgementfree
health services; religious
institutions; their clients; and their
families, friends and communities
when they discover that they are
doing sex work. At times, the
violations extend to their children
in the form of name calling and
labelling: ‘when they see my child
they say ‘that’s a prostitute’s
child, look at it’2.
For sex workers in many countries
the police are among the last people
they can turn to when their rights
have been violated, as it is, at times,
the police who are the ones violating
sex workers’ rights. Many sex
workers fear the police, due to the
violence and abuse, including rape,
perpetrated by the police against
sex workers.
Recently the military police
raped sex workers in Kisenyi
and they had unprotected
sex, but the sex workers
refused to go to the police.
They asked themselves ‘how
are we going to report this
case, that this time around we
have been raped by the
military police’?
[Female sex worker, Kampala]3
I was escorting my client to his car after his massage and
there were plain-clothes policemen…three of them. Just
as he drove off, they came and I thought they were thieves
trying to take money so I tried to explain to them no I am
not carrying anything; only to discover that they were
policemen. There’s a car park next to the flat and they took
me there and they took turns.
[Female sex worker, Bulawayo]4
Gross human rights violations perpetrated by the police
also increase sex workers’ risks to contracting HIV or other
sexually transmitted infections. In order to be able to access
post-exposure prophylaxis (PEP), one needs to lay a charge of
rape and get a medical examination. How does one go to report
a rape at the police station when the perpetrator of that action
is the police? The chances are that these crimes by and large go
unreported and the sex workers are not in the position to access
PEP and other treatment after the rape.
Sex work and health
We are despised in the hospitals. They say, ‘We don’t have
time for prostitutes’ and they also say that if one prostitute
dies then the number reduces.
[Female sex worker, Kampala]5
The most common ideology when discussing sex work and
health is that sex workers are ‘diseased’, and they are the ones
to blame not only for the failure of marriages, but also for the
spread of HIV and other sexually transmitted infections. It is
because of assumptions like these that
sex workers are ill-treated when trying
to access health services. The reality
is that many sex workers are aware of
how to protect themselves from being
infected and from transmitting the
virus, but they often do not have the
power or the means to do so, as many
clients will force sex workers to have
unprotected sex and/or offer higher
prices for sex without a condom6.
I know a lot of men like that
[unprotected sex] but if you are
…violations
are not unique
to Africa, but to
countries where
sex work is
criminalised…
Special report:
Their voices need to be heard…
Barriers to healthcare as experienced by sex workers
Dianne Massawe and Pamela Chakuvinga
IAS 2011 Rome • 17 – 20 July 21
principled, you stick to the
principle of no condom, no sex.
[Female sex worker, Bulawayo]7
In addition, although many sex
workers have the knowledge of how
to reduce the risk of transmission,
they have poor access to healthcare
and HIV prevention technologies,
due to their exclusion from
public campaigns for safer sex
and their limited access to health
services in general, due to stigma
and discrimination. For many
sex workers, the much needed
information, support and services
are received mainly from nongovernmental
organisations that have
a minimal reach, due to limitation
of funds and coverage, as compared
to state facilities8. In the study by
Scorgie et al9 many sex workers said
that they made use of facilities that
they knew catered for sex workers
or were sex worker friendly, but
these facilities are located only in
some places and meet the needs of
the few who are located near them.
The discriminatory attitude and maltreatment
sex workers experience in
clinics and hospitals often deter sex
workers from accessing the muchneeded
services.
When I fell sick and went to a
health centre and they realised
that I was a sex worker, they did
not treat me like a human being.
When the health worker came
to attend to me she said that I
should go to the other health
worker and when I reached the
other health worker, I was told
that he had no time for me so I
left without getting treatment.
[Female sex worker, Kampala]10.
For sex workers to be in the
position to work safely and to
minimise contracting HIV and other
STIs, they need comprehensive HIV
prevention technologies, such as
female and male condoms, dental
dams, gloves, and lubricant, that are
free and easily accessible, and that
will not be used as a means to
arrest them.
I have always seen many of my
friends insist on condoms. As a
woman I have a choice of the
female condom. Many of my
clients prefer using the female
condom; they complain that
the male condom is too tight
for them.
[Female sex worker, Bulawayo]11
There is one male worker [at
the clinic] who brings condoms
for me and ask me to have sex
with him because he brings me
something so I must have sex
with him…. it means it’s not for
free, you have to exchange it
with something.
[Female sex worker, Musina]12
Conclusions
In order to minimise sex workers’
risks of infection of HIV and other
STIs, their voices need to be heard
and services need to cater to sex
workers’ needs. For the sex workers
who participated in this study their
needs range from law reform, so
that their work is recognised as
work and they are no longer viewed
as criminals, to better access to
healthcare, not only for themselves,
but for the public.
There is also a need for
people-friendly, stigma and value
free services that all people,
including sex workers, can access
without the fear of being stigmatised,
discriminated against and abused.
We need services that protect the
human rights and dignity of all
people, as this will promote the
uptake of services, and thus further
public health efforts to halt the
spread of HIV.
Lastly, there is as much the need
for solidarity with sex workers and
support for sex workers’ rights, as
there is the urgent call to ensure
that all women are in the position to
access the sexual and reproductive
health services they need and are
entitled to.
1. Richter et al. 2010. ‘Sex work and
the 2010 FIFA World Cup: Time for
public health imperatives to prevail’. In: Global Health, 6, 1.
2. Scorge et al. 2011. ‘I expect to be abused and I have fear: Sex
workers’ experiences of human rights violations and barriers to
accessing healthcare in four African countries. p9. [https://groups.
google.com/group/sex-work-2010-reference-group]
3. Ibid, p32.
4. Ibid, p32.
5. Ibid, p10.
6. Adu-Oppong, A., Grimes, R. M., Ross, M. W., Risser, J. & Kessie,
G. (2007) Social and behavioral determinants of consistent condom
use among female commercial sex workers in Ghana. AIDS Educ
Prev, 19, pp160-172.
7. Scorge et al. 2011. ‘I expect to be abused and I have fear’: Sex
workers’ experiences of human rights violations and barriers to
accessing healthcare in four African countries. p38. [https://groups.
google.com/group/sex-work-2010-reference-group]
8. UNAIDS. 2009. UNAIDS Guidance Note on HIV and Sex Work.
Geneva.
9. Scorge et al. 2011. ‘I expect to be abused and I have fear’: Sex
workers’ experiences of human rights violations and barriers to
accessing healthcare in four African countries. [https://groups.
google.com/group/sex-work-2010-reference-group]
10. Ibid, p51.
11. Ibid, p38.
12. Ibid, p56.
Dianne is a Researcher at the AIDS Legal Network (ALN) and
Pamela is a member of the African Sex Worker Alliance from
Zimbabwe. For more information: Dianne@aln.org.za.
…the reality
is that many
sex workers
are aware of
how to protect
themselves
from being
infected
and from
transmitting the
virus…
In Women’s Words:
E nsure adequate information, training, support, and remuneration for women and girls who are care-givers, including mothers, volunteers and older carers,
and women and girls living with HIV. [East and Southern Africa]
22 IAS 2011 Rome • 17 – 20 July equality, to ensure the full and
meaningful participation of
women and girls, in particular
those of us living with and
affected by HIV, in the
HIV response.
4. Empowering us (women and
girls) to be catalysts of social
justice and positive change,
and eliminate all forms of
violence against us.
5. Ensuring full access to
information and education,
including comprehensive
sexuality education for all
women and girls.
These were the five key messages
that loudly resonated from the virtual
consultation echoed from region
to region passionately, sincerely,
and with a collective yearning for
universal access to HIV prevention,
treatment and care for all women
and girls everywhere.
While the launch was an excellent
means of highlighting issues of
women globally and informing
future HIV responses, sadly, we
did not see the language adopted
in the High Level Declaration
itself. While paragraph 53 had
excellent language for women
and girls, it was not as expansive
as many of us had hoped.
Much of the language was that
It was very positive to open
the High Level Meeting on
AIDS in June 2011 with
In Women’s Words on
Tuesday, 07 June 2011,
the eve of this important
global meeting. The survey
and event was an excellent
example of effective
partnership between civil
society and global planning
mechanisms.
The event launched the Athena
Network, UNAIDS, GCWA and
UN Women virtual consultation
results.1 It was excellent to have a
document capturing the anecdotal
realities of women that inform the
empirical values determining funding,
resource allocation and targets
for girls and women in National
AIDS Strategies. The survey and
ensuing processes also highlighted
how imperative the inclusion of
women, and women living with
HIV, in national, regional and global
HIV responses.
For many of the nearly one
thousand women who participated
in the survey who sat divided from
policy, planning or even modest
mechanisms, to give voice to their
realities; this was the time and this
was the moment that their pain,
social trials, daily struggles against
the tide of inequality and desperation
for change could turn poison into
medicine and inform new realities
through the High Level Declaration
on Universal Access. From small
villages to urban epicentres, women
shared realities of blistered feet
walking to dismissive providers
riddled by stigma and women
living with HIV desperate for access
to care. Women shared their most
intimate struggles for universal
access, their most tender hopes for
change, and their most robust calls
for government to change the tide
in human rights and HIV treatment,
care and prevention. The survey
yielded five key points developed in
an Action Agenda.
The Action Agenda presented at
the launch included the following:
1. Ensuring comprehensive and
inclusive HIV services that
address the visions, life-long
needs, and rights of women
and girls in all our diversity.
2. Eliminating stigma and
discrimination, and ensure
full protection of the human
rights of all women and girls,
including our sexual and
reproductive rights.
3. Strengthening, investing in,
and championing our (women
and girls) leadership and
…women
shared their
most…robust
calls for
government to
change the tide
in human rights
and HIV…
…social
climates that
dismiss and
deny the rights
of women
living with HIV
to be sexual,
mothers
and healthy
women…
In my opinion…
A collective yearning for universal access…
Ebony Johnson
IAS 2011 Rome • 17 – 20 July 23
programming; human rights;
women’s rights; access to generic
drugs; acknowledgement that
healthy children need healthy
mothers; mothers need access to
care, treatment and support beyond
vertical transmission services.
While it was amazing to hear
championing for women health,
rights and quality of life; the amazing
panels, presentations, side meetings,
rousing speeches and glorious
calls to actions were all needed in
advance of the negotiations wherein
they could have made practical and
substantial impact on the negotiation
and the outcome document. This
was sadly just an example of one of
the many disconnects and missed
opportunities of the HLM process.
1. The outcome document of the Virtual
Consultation, In Women’s Words’, can be
accessed on www.wecareplus.net/resources/
InWomen%27sWordsFinal.pdf
Ebony is with the Athena Network.
For more information:
athenainiative@gmail.com.
which had been previously
included in the 2006 Declaration.
In particular, there was no
reference to the necessity for sexual
and reproductive health services and
rights for women living with HIV. This
is disheartening as women living with
HIV face compounded challenges
of gender inequity, HIV-related
stigma and discrimination, inability
to negotiate safer sex, forced sex
by primary partners and husbands
who leverage housing and other
financial supports, coercive providers
and social climates that dismiss and
deny the rights of women living
with HIV to be sexual, mothers and
healthy women.
Throughout the HLM process there
was a propensity to link SRHR for
women with prevention of vertical
transmission programmes that are
geared toward infant health and
viability, which grossly misses the
mark on providing comprehensive
services to all women throughout
their lifespan. Women and girls living
with HIV want, need, and deserve
access to sexual and reproductive
health services, prevention services
and comprehensive sexuality
education. These services and
compassionate provider delivery are
imperative to women living with
HIV being in control of the number,
timing and spacing of their children,
as well as preventing unplanned
pregnancies, treating and assessing
sexually transmitted infections,
and maintaining their reproductive
health. Health is a human right for all,
not a luxury deemed by HIV status,
occupation, drug history or age.
Despite all of this, it was, indeed
heartening in the panels and side
session to have governments,
including Rwanda, Portugal, Mexico,
Liberia and St Martin make robust and
welcomed calls for micro-financing
for women and girls; prevention
innovation; funding for civil society
as community healthcare providers;
TRIPS flexibilities; acceleration of
female condom provisions and
…not as
expansive as
many of us had
hoped…
…rousing
speeches and
glorious calls
to actions were
all needed in
advance of the
negotiations…
In Women’s Words:
I am not promoting, I live with HIV, but only at our centre – The Centre for Mental Health and HIV – I have received everything necessary. There is a paediatrician
here who takes care of my children; there is a physician here who takes care of me. I live with hepatitis C; there is an ultrasound scanner at our centre, and I have the
scanning done for free. We have a gynaecologist, she consults and examines me regularly, we even have a colposcope. And I can access all these services any time for
free. I receive advice from my gynaecologist on sexual health, since my partner also lives with HIV. I receive condoms here; I even learnt about female condoms at our
centre for the first time and received my first one here. When I or my children fall ill, I am provided with massage and physiotherapy services at our centre – ultraviolet
irradiation, UHF-therapy, ozokerite and paraffin applications. All women coming to us have access to such services. This is the first such centre in Tajikistan. We are
an NGO; we just have a healthcare centre which provides services to general public. At the same time, HIV+ people are also openly serviced – in other words, HIV+
women are not afraid to disclose their status. We do need such a centre. This is the only place in our country which provides everything necessary for a woman. When
our women are preparing for delivery, they are provided with trainings and with milk for newborns. Then our paediatrician monitors the babies and adjusts nutrition
where necessary. We are also tested for hepatitis and TB here and receive social support. [Tajikistan]
24 IAS 2011 Rome • 17 – 20 July
In Women’s Words:
W ithin Asia-Pacific there is still a great deal of coerced abortion,
sterilisation and refusal of abortion – i.e. many women have no
reproductive choices available to them. [Australia]
T he condom system fails to recognise the fact that for it to be effective
both parties most agree and understand its use, most time the woman
has no say in the relationship and cannot insist her partner uses condom, she
is also unaware of the female condom, can’t afford it or she is afraid of the
trouble it will stir, as female seen with condoms are termed promiscuous.
[West and Central Africa]
Women from marginalised groups will not reveal
their profession or drug habits to health workers
for fear of being stigmatised. Women from marginalised
groups will not discuss their situation with health
workers. Stigma and discrimination among health workers
is the biggest obstacle for women to access health
services if they are HIV positive. [Malaysia]
HIV/AIDS is very much a gay agenda item in the US, and there are women’s issues addressed but not in proportion
to the numbers of women affected by HIV. Right now, right-wing political efforts to prevent access to abortion and
birth control and requiring parental notification are growing and receiving support, jeopardising youth’s ability to make
autonomous decisions about reproduction. This is compounded by the erosion of sex education, leaving youth unprepared
for sexual experiences, which they (and most people) actively seek. [US]
There is just the beginning of discussion re NPT
[new prevention technologies], but this is mostly
in the print media, which is not always accessible for
all women. At present microbicides are stigmatised in
Zambia, because of inaccurate reporting post the MDP
301 trial results which were misconstrued for political
gain. At present both men and women likely believe
that microbicides give people HIV and that any further
research on microbicides has been banned as per the
bold press headline of Jan 2010. There will be a long
uphill battle to have people have open minds about and
be able to understand research and NPTs. [Zambia]
HIV testing is offered only to pregnant women and
usually without informed consent, and without pre
and post test counselling, regardless of the outcome. In
many places in our country the confidentiality of a woman
living with HIV is not respected, exposing them to stigma
and discrimination; not only her but everyone around her,
especially her daughters and sons and even more so if
they are also living with HIV. It is very common for people
to travel long distances to get tested for HIV, so that this
information is not divulged in their place of residence.
[Argentina]
S tigma associated with HIV positive women, women in sex work etc, etc is a huge impediment to prevention; sex
worker’s clinics should be run by sex workers [Kenya]
Supported by the Oxfam HIV and AIDS Programme
(South Africa)
Editors: Johanna Kehler jkehler@icon.co.za
E. Tyler Crone tyler.crone@gmail.com
DTP Design: Melissa Smith melissas1@telkomsa.net
Printing: FA Print www.aln.org.za www.athenanetwork.org