Project Description

Whats inside:
Special report:
Prevention Justice
Feedback from
the Global
Village…
Rights Here, Right
Now?
News from the
‘margins’…
The need to move
beyond
Women’s
realities…
Dedicated
resources
Women’s voices…
Unifying issues?
In her opinion…
Back where we
started
In Focus…
Vienna 2010 Declares:
‘Rights Here, Right Now’?
‘Broken Promises Kill’
according to the t-shirts
decorating scores of
protesters who made their
presence known early in
the Opening Plenary of IAS
Vienna 2010 Conference,
the 18th annual global
gathering of scientists,
practitioners, advocates,
activists, politicians, policy
makers and people living
with HIV. Bearing giant
balloons and red umbrellas,
the representatives of
fundglobalaids.org had
just staged a ‘die in’ in
front of the conference
venue, before addressing
the opening session with
chants of ‘no retreat,
fund AIDS’.
The refrain from the dais
was much the same,
whether delivered by unauthorised
demonstrators or the diverse and
sometimes divided panel of official
speakers. The ‘state of the epidemic’
included gains over the last five years,
but also a sense of betrayal at what
both grassroots activists and global
health policymakers perceive as a
‘backlash´ against AIDS funding that
has precipitated significant cuts in the
global budget. This challenging new
reality poses a potential threat to the
emerging focus on human rights that
is this year’s conference theme.
Towards the Right to Health?
Despite the sense of urgency
amid increased austerity, the plenary
provided an opportunity to reflect
on the recent successes on the road
toward ‘universal access’. Most
significantly, the last five years have
seen Highly Active Antiretroviral
Therapy (HAART) reach 5 million
people living with HIV in middleincome
and poor nations, including
in South Africa where policy has
shifted from neglect and denialism
to increasing provision of lifesaving
HAART. Approximately 40%
of those who need treatment now
receive the lifesaving drugs.
Meanwhile, as populationlevel
evidence of the prevention
effectiveness of increased HAART
access as a prevention strategy has
become available, the partial success
of the IAS 2009 theme ‘treatment
as prevention’ is also beginning
to become apparent. According to
studies conducted among serodiscordant
couples in Southern
Africa, HAART is up to 90% effective
as a prevention strategy under such
circumstances. As a result of these
achievements, the epidemic may have
‘peaked’ in the early 2000’s, though
the absolute number of people living
with HIV continues to rise, due both
to new infections which continue at
a rate of 7,400 per day and to the
longer life-span of those with access
to therapy.
Affording Rights, Catching
‘Criminals’
While these successes are notable,
most of the plenary speakers focused
on the distance between the realities
of AIDS policy and decades old goals
of a cure combined with ‘universal
access’ and the threat to existing and
future public health and human rights
posed by shrinking budgets.
Rachel Arinil of Indonesia pointed
to the gap between the impact of the
Mujeres Adelante Monday •19 July 2010
Daily newsletter on women’s rights and HIV – Vienna 2010
Kate Griffiths
epidemic on young people, claiming that
despite representing 40% of new infections,
they do not command 40% of global AIDS
programming resources, and instead often
face gross violations of human rights,
including rape and trafficking. Dr. Sharon
Lewin, of the University of Melbourne
argued that increased access to treatment
and longer lives for people living with HIV
has increased rather than decreased the
urgency of finding a cure for those infected
and the need for research funding.
Paula Akugizibwe of the AIDS and
Rights Alliance for Southern Africa
(ARASA) more starkly posed the question
of what it means to ‘afford´ the right to health
and treatment not only by condemning the
recent decision of G8 nations to pull out
of funding commitments for HIV, but also
by pointing out the spectacular spending
and waste by Southern African nations
and leaders on birthday parties, planes
2 Monday • 19 July 2010 Through years of advocacy and raising awareness on the impact, and
especially the gendered impact of laws penalising transmission of HIV,
criminalisation has become a ‘growing concern’, according to Richard Elliot, of
the Canadian HIV/AIDS Legal Network. Along with Michaela Clayton of the
AIDS and Rights Alliance for Southern Africa (ARASA), Elliot co-chaired a Sunday
satellite session addressing the issue, emphasising the spread of legal penalties
and prosecutions from Western Europe and North America to the rest of the
globe, and particularly to African countries hit hardest by the epidemic.
The session, which included contributions from advocacy organisations
in North America, Southern Africa, and Europe, helped to set the tone for
this year’s International AIDS Conference’s special focus on the intersections
between punitive legislation, HIV transmission and public health outcomes, as
laid out in the 2010 Vienna Declaration’s urgent call to halt the criminalisation of
intravenous drug users, and to step-up research into the public health impacts
of laws that impact people living with HIV.
Moono Nyambe, of GNP+, one of the organisations hosting the satellite,
described the spread of both the global criminalisation of HIV transmission and
the response; co-ordinated development of research, monitoring and advocacy.
Over 600 people living with HIV have been convicted of ‘crimes’ in more than
80 countries for their role in HIV transmission or exposure. The United States
had by far the largest number of prosecutions and the most severe penalties,
with several European nations leading with the highest percentage of people
living with HIV within the nation prosecuted under HIV-specific legislation.
Meanwhile, Africa has recently seen the spread of ‘model laws’ that criminalise
the exposure or transmission of HIV, including in Tanzania and Mozambique,
along with documented prosecutions of two women in Zimbabwe.
Impact
According to the experiences documented by health and human rights
advocates, these laws tend to be ‘selectively enforced’ and have the greatest
impact on marginalised groups, including LGBTQ people, low-income people
and women. Such laws also, paradoxically, target those most likely to be aware of
their HIV status, including women in countries where the epidemic is primarily
heterosexually transmitted. Johanna Kehler of the AIDS Legal Network in South
Africa argues that criminalisation of HIV exposure or transmission ‘harms’ women
by discouraging treatment and testing, by increasing the risk of gender-based
violence and abuse, and by limiting women’s sexual and reproductive rights.
Response
In response, policy and advocacy organisations, ranging from UNAIDS to
the Terrence Higgins Trust, have begun to co-ordinate a response aimed at
legal reform, education, engagement with law enforcement, emphasis on the
most credible and recent scientific information about HIV and, most critically,
developing a population-level evidence base that can confirm the negative
public health consequences of criminalisation that advocates and people living
with HIV have observed at the grassroots level in many countries. The challenge
remains ‘where to draw the line’ when it comes to criminalisation, and how
best to mitigate the impact of punitive laws, while simultaneously pressing for
legal reform.
Kate is a writer and ethnographer based in Durban, South Africa.
Criminalisation: A ‘growing concern’
Kate Griffiths
and world class stadiums, while the commitments made in 2001 in
Abuja to devoting 15% of national budgets to the epidemic remain
unfulfilled. The costs for individual delegates to travel and attend the
2010 IAS conference itself, she noted, represent 20% of the funding
allocated to fighting HIV and TB in Southern Africa.
Akugizibwe then delivered a comprehensive and impassioned
overview of the intersection of human rights violations and HIV
infections, pointing to the increased vulnerability to infection,
criminalisation, violence and barriers to treatment faced by not
only intravenous drug users, such as those described in the Vienna
Declaration, but also LGBTI people, sex workers, prisoners, and
particularly women. Human rights, in this view, are necessary, but
not sufficient, to end the epidemic.
Concluding that ‘we are making a decision to cut back on funds…
[a decision] that will not just violate human rights, but which will
turn out to be a foolish economic decision’, Akugizibwe referred
to those G8 policy makers responsible for cuts and often increased
criminalisation of people living with HIV, asking rhetorically ‘who,
then, are the criminals?’
Kate is a writer and ethnographer
based in Durban, South Africa.
…a potential
threat to the
emerging focus
on human
rights…
…the spectacular
spending
and waste
by Southern
African nations…
while the
commitments…
to the epidemic
remain
unfulfilled…
News from the ‘margins’… Mmapaseka ‘Steve’ Letsike
The need
to move
beyond…
AIDS 2010 focuses on LGBTI, MSM,
WSW and MARPs for discussions,
presentations and debates. And although
this might reflect a human rights-based
approach to inclusive and comprehensive
responses and services, we need to
continuously question ‘who’ is represented
and ‘who’ is representing in these events.
We know that despite increasing evidence
of the need for HIV and health-related
interventions for same-sex practicing people,
there are limited formal HIV prevention,
testing, treatment, care and support
programmes targeting men who have
sex with men, and even fewer for women
who have sex with women. Interventions
remain scares for many critical populations
in many countries, and same-sex practicing
Africans are one of them. Without immediate
attention to this human rights and public
health crisis, efforts to effectively respond to
the AIDS pandemic in Africa may be seriously
undermined and potentially reverse any gains
made in the response to HIV and AIDS.
Persistent violations of human rights are
exposing same-sex practicing people to
increased risk to HIV and circumscribing
their ability to protect themselves, their
families and their partners. The denial of
basic human rights as a result of sexual
orientation may well be the most significant
social risk factor for same-sex practicing
Africans. Social vulnerability to HIV is not
an innate condition, but the result of legal,
political and economic inequalities that
lead to an inability of people to protect
themselves from exposure to HIV, or to
control its impact on their lives.
LGBTI, MSM, WSW and MARPs focused
organisations are here in Vienna to draw
attention to the lack of specific HIV
programming and services; as well as the
actions and inactions of governments,
healthcare providers, and foreign donor
contributions to HIV vulnerabilities, when samesex
practicing people face discrimination and
unequal treatment in obtaining healthcare,
safer-sex supplies, information or treatment.
We need to move beyond these notable
exceptions and begin to respond right here
and right now!
‘Steve’ is with OUT LGBT Well-Being,
South Africa
Monday • 19 July 2010 3
News from the Global Village…
Rights Here,
Right Now…?
Women-controlled prevention
technologies are still unavailable or
inaccessible to most women, and even the
female condom – where available – still
requires negotiation with sexual partners. At the same time,
the reported early success of medical male circumcision
trials, whilst reducing HIV transmission to men, may have
repercussions for women if they wish to negotiate the use of
male and female condoms to protect themselves; and
people living with HIV continue to encounter high levels
of stigma which can undermine treatment and positive
prevention efforts.
What does this slogan mean for young
women who face isolation, stigma and
punitive treatment as a result of their
HIV status or behaviours and lifestyles
that could place them at higher risk of
acquiring HIV.
What does this slogan mean for
sex workers who face stigma, punitive
treatment, and high risks of violence when
they are not able to work within a legal framework as a result
of their HIV status?
What does this slogan mean for women facing punitive
laws in relation to vertical HIV transmission, often conflicting
pressure from families, communities and health workers,
abuse steamed by stigma and ignorance, and even
institutionalised manipulation, coercion, and violence within
the health sector?
Luisa Orza
4 Monday • 19 July 2010 I think that by the end of
this conference we should
see the establishment of an
information-sharing centre
with help lines to point women
to assistance and appropriate
networks in terms of HIV
interventions. Information
is power and as women we
can never have enough of
it – said Katja Fierkat of the
Health Protection Research
Organisation based in UK.
Another participant urged the
conference to launch a campaign
for access to the female condom
worldwide as a way of empowering
women.
We need empowerment in
the form of access to female
condoms, and the knowledge
that we can contribute to
processes even as HIV
positive women, not just
await prescriptions from
all-knowing donors and
programmers.
World YWCA Secretary
General, Nyaradzayi
Gumbonzvanda, argued that it
was insufficient to sing the theme
‘Rights here, right now’, without
interrogating access to funds, and
urged the Global Fund to consider
increasing budgets for interventions
specifically targeting women.
Global Fund Director for
External Relations and Partnerships
responded that his organisation had
committed to funding women and
girls, through the Gender Equality
Strategy and Sexual Orientation
and Gender Identities Strategy. He
also encouraged women to begin
to include other issues affecting
them in their proposals, such as
gender-based violence and maternal
mortality, in addition to HIV and
AIDS.
Audrey is a media
and communications
consultant from Zimbabwe
While the conference theme
‘Rights Here, Right Now’
is for the world to reflect on
commitment to mitigating HIV and
AIDS universally, women’s rights
activists have taken the opportunity
to demand visibility of womenspecific
issues, by interrogating
the levels of commitment
by stakeholders to women’s
empowerment at this year’s AIDS
conference.
Speaking at the launch of the
advocacy activities by Women
ARISE, a new global coalition of
women’s networks, various speakers
noted the need for commitment to
provide adequate resources in order
to create an enabling environment
for achieving the reduction in HIV
infections and in the burden of care,
as well as the access to resources
for women, as key in moving the
conference theme forward.
Mabel Bianco, Director of
FEIM and co-founder of Women
Arise, urged participants to debate
and interrogate honestly issues of
resource allocations in relation to the
realisation of women’s rights.
Women need special access to
services; they need to begin
realising their right to live
their lives free of violence and
discrimination…and how is it
possible to have these services
without money?
Dr Nafis Sadik, UN Special
Envoy for HIV and AIDS in Asia
and the Pacific, argued that there
was a huge information gap in most
sexual and reproductive health and
rights programmes for young women
and girls, as most programmes
targeted only married women. She
further stated that there was need to
empower young women and girls,
through relevant and appropriate
information dissemination, to enable
them to begin utilising and enjoying
their sexual rights from an informed
perspective. According to Dr Sadik:
Traditional and cultural norms
across the world were not
designed to protect women.
Young women and girls in
particular are vulnerable
to unwanted pregnancies
and sexually transmitted
infections, including HIV
infection. There is need for
women’s organisations and
civil society organisations to
lead in advocacy for access
to information as a way of
empowering young women
and girls.
She also underscored the
need for political leaders to begin
acknowledging that primary
healthcare for women was not
charity, but a policy and rights
issue, that contributed directly to the
mitigation of HIV and AIDS.
HIV and AIDS know no
borders; similarly advocacy
should be international and
must deliberately cater for
girls. Ignorance about sex and
sexuality, which is the norm
in most societies, coupled
with poverty, increases girls’
vulnerability to infection.
Dr Sadik advocated for a threepronged
campaign, which focuses
on education, gender equality and
women’s sexual and reproductive
health and rights as one way of
ensuring that women’s issues are
addressed in mitigating HIV and
AIDS.
Using the participatory
approach, Meena Seshu, Executive
Director of SANGRAM, and
Zonibel Woods, of the Global HIV
Initiative, continued the discussion
and urged participants to share their
visions and expectations from the
conference.
Most participants cited the need
for donors to commit to allocating
a certain percentage of funding to
women-specific issues, while others
urged that governments must put in
place legal frameworks to ensure
that women were not side-lined in
the HIV and AIDS discourse and
interventions at a country level.
…not charity,
but a policy and
rights issue…
…information
is power and
as women we
can never have
enough of it…
Women’s Realities…
A need for dedicated funds and resources
Audrey Charamba
Women’s Voices…
Generations and unifying issues?
The session entitled ‘An intergenerational
conversation: Does
the struggle for realizing the human
rights of women still matter to young
women’, took place on July 18 2010.
It consisted of a panel of five women
representing selected age groups.
The women were in their 20s, 30s,
40s, and 80s, thus representing both
‘women’ and ‘younger women’, all
working within the HIV movement.
One of the panellists emphasised that the struggle between
the older and younger generations were alike, only with different
issues. While young women today struggle with HIV and AIDS,
protection, care, safety, and freedom of violence, they could
still use the experiences of the older generation, who already
has ‘fought their fight’. The apparent gap between the two
generations highlighted in this comment, was also underlined by
Dr. Saadiq responding that the power relations between younger
and older women should be broken down, as there might be a
gap between the two generations; also mirrored in the different
expectations of life, including sexual rights. She concluded by
asking if the women who fought for these rights would allow
their daughters to enjoy the same rights as they had in terms of
sexual health, questioning whether or not these rights have
been internalised.
Oriana, a third panellist, concluded that young people are
not ‘helpless’, and that women and younger women should not
be seen as two generations, but ‘just as women’. In addition,
Oriana also illuminated that power relations should be shared
vertically, as opposed to horizontally, which, in her view, has not
been the case thus far. The session ended in recognising that
although culture, tradition, religion, as well as stigma complicate
intergenerational dialogue, women should focus more on the
unifying issues and not as much on the generational and
other divides.
Sabrah is with the AIDS Legal Network, South Africa
Monday • 19 July 2010 5
Sabrah Møller
Tuesday, 20 July
08:30–09:30 Gender, Sexualities and HIV/AIDS
in Latin America Women’s Networking Zone
09:00–10:30 Plenary Session Session Room 1
9:30–10:45 HIV and Injection Drug Use: Making Harm
Reduction Work for Women Women’s Networking Zone
11:00–12:30 Social Sciences and Interventions:
Putting Theories into Practice Session Room 9
13:00–14:00 Update on Microbicides Session Room 7
13:00–14:30 Women IDUs: Why so Many Barriers
When There are so Many Needs? GV Session Room 2
13:45–15:00 Women Living with HIV in Europe and
Central Asia: Launching a New Network
Women’s Networking Zone
14:30–18:00 Safer Feeding for HIV-Exposed Children:
How to Integrate Infant Feeding Into Community-Based
HIV Prevention Activities Mini Room 10
18:30–20:30 Sex Work Legislation: Solution or Problem?
Mini Room 2
Upcoming
events
The HIV epidemic among women in
the United States is not driven by
women making ‘risky or rash decisions’.
Until we redefine vulnerability, and
transform the social and economic
context in which women live, play,
work, and love, we will fail to achieve
prevention justice for women and
HIV will continue to ravage our
sisters, daughters, mothers, and
grandmothers.
Women comprise nearly onethird
of HIV infections in
the U.S. today. Women of colour,
especially Black and Latina women,
are disproportionately impacted by
the HIV epidemic – representing
over 80% of infections among
women. AIDS remains the leading
cause of death among African-
American women between the ages
25 to 34 years – women in their
prime as productive and central
members of our communities.
And data recently released by the
U.S. Centers for Disease Control
and Prevention (CDC) show that
adolescent girls bear an undue
burden of common sexually
transmitted diseases among the
youth.
With this kind of data at
our fingertips, federal agencies
responsible for the health and wellbeing
of Americans ought to have a
sense of real urgency; and make this
critical epidemic among women and
communities of colour an immediate
priority.
Yet, even the CDC – the federal
agency responsible for coordinating
public health prevention efforts
– prioritised the release of data
on STD rates among men who
have sex with men (MSM) on
National Women and Girls HIV/
AIDS Awareness Day on March 10,
2010. While these data are vital for
addressing the urgent prevention
needs of gay and bisexual men and
other MSM, the poor timing of the
release may lead some to question
the CDC’s own awareness of the
impact of HIV on women and girls.
Until we commit to systemically
addressing the deeper structural
issues that place women, gay and
bisexual men, and communities of
colour overall at disproportionate
risk for HIV, we will fail to achieve
HIV prevention justice.
One such structural issue is the
current risk assessment system that
perpetuates misperceptions in the
community about who is truly at
risk for acquiring HIV – resulting
in late diagnoses and unnecessarily
poor health outcomes for women
with HIV. HIV prevention efforts
to date have been largely focused
on changing the decision-making
and risk-taking behaviour of
individuals. Yet, a majority of
women testing positive for HIV in
the U.S. does not fit the narrowly
defined high-risk categories for HIV
transmission, which are entirely
predicated on individual behaviour
and personal knowledge of exposure
to risk (for women read: ‘high-risk’
heterosexual contact or injection
drug use). ‘High-risk heterosexual
contact’ is defined by the CDC as
‘heterosexual contact with a person
known to have, or to be at high risk
for, HIV infection’.
Most of us would agree that a
system built upon people seeking,
or being offered HIV testing due to
knowledge of the complete sexual
and drug use history of their partner
is doomed to failure with deadly
consequences. Yet this orientation
has driven surveillance efforts and
resource allocation towards HIV
prevention efforts.
Reimbursement rates for
HIV testing vary widely, and are
dictated by data collection about
behavioural risk factors. Since
we do not accurately capture and
disseminate data about what puts
women at risk for acquiring HIV,
reimbursement rates for testing non-injection-drug-using
women are artificially deflated. Consequently women are
often discouraged from (or outright denied) an HIV test,
despite the World Health Organization’s revised guidelines to
encourage earlier treatment of HIV to promote better health
outcomes for HIV-positive individuals.
Case after case of women being turned away from HIV
testing have been documented by the National Women and
AIDS Collective (NWAC); and a recent report released
by the National Alliance of State and Territorial AIDS
Directors (NASTAD) supported these findings, with testing
service providers admitting that contract restrictions and
reimbursement rates drive their testing and outreach efforts.
Providers are contracted and paid to test populations
perceived to be at highest risk for HIV transmission.
However, women’s vulnerability to HIV correlates more
accurately to our risk for acquisition. Risk for acquisition is
a very different picture – coloured only partially by personal
behaviour and more by our social and sexual networks,
gender inequity, power dynamics in relationship, socioeconomic
status, community and family infrastructure, and
accessibility of healthcare and accurate health information.
…a majority of
women testing
positive for
HIV in the U.S.
does not fit
the narrowly
defined highrisk
categories
for HIV
transmission…
Special report:
HIV Prevention Justice: Not Optional for Women
6 Monday • 19 July 2010 Naina Khanna, Waheedah Shabazz-El
and resource services for communities
at structurally elevated risk for HIV
– not just individuals who self-report
behavioural risk. It will mandate
increasing diversity, usability,
accessibility and affordability of HIV
prevention mechanisms that can be
controlled by women.
Achieving prevention justice for
women requires community leadership
to create a social and political
environment where women’s health
and right to access medical services
is no longer an acceptable bargaining
chip for political parties, but a reality.
And, above all, it demands a continual
commitment to address racial, gender,
and economic injustice throughout the
entire healthcare system.
Naina is with Women Organized to
Respond to Life-threatening Disease
(WORLD), and Waheedah the
Community HIV/AIDS Mobilization
Project (CHAMP).
Organisations with a track
record of working with women
living with, and vulnerable to,
HIV infection have developed
their own approaches to address
the complex structural issues
impacting on women’s lives over
years of serving their communities.
These often take the form of
‘home-grown interventions’, such
as the Healthy Love Workshop
developed by SisterLove, Inc. in
Atlanta, that was recently featured
in the peer-reviewed journal AIDS
and Behavior. These approaches
confront root causes of vulnerability,
such as gender-based violence, and
provide access to a broad spectrum
of services to reduce vulnerability
and promote access, while teaching
accurate and comprehensive
information about sexuality and risk
reduction strategies.
Achieving an effective HIV
prevention response for women will
require building capacity of such
organisations to continue this crucial
work, and to partner beyond the HIV
realm.
Achieving prevention justice for
women demands first a commitment
from the HIV community and
federal agencies responsible for
containing the epidemic to take the
HIV crisis among women seriously.
Achieving prevention justice for
women will require research and
investment to promote a structural
and collaborative response to the
HIV epidemic that truly upholds
women’s human rights, including
locating comprehensive sexual
and reproductive health services
within HIV services. It will
necessitate increased investment
in HIV prevention overall, and
implementing a more comprehensive
and sophisticated system to target
…an effective
HIV prevention
response for
women will
require…
organisations…
to partner
beyond the HIV
realm…
Monday • 19 July 2010 7
and views…
Images…
Supported by the Oxfam HIV and AIDS Programme
(South Africa)
Editors: Johanna Kehler jkehler@icon.co.za
E. Tyler Crone tyler.crone@gmail.com
Photography: Johanna Kehler jkehler@icon.co.za
DTP Design: Melissa Smith melissas1@telkomsa.net
Printing: invecon www.invecon.sk
www.aln.org.za www.athenanetwork.org
8 Monday • 19 July 2010
In her own words…
In conversation with Shari Margolese*
* Based on an interview conducted by Lauren Suchman
pregnancy planning for people living
with HIV. The project itself, as pointed
out by Shari, is structured according
to a community-based model that
promotes social justice and human
rights, and also engages with the
social determinants of health. And
since the community of people
living with HIV has been involved
from the inception of the project,
Shari says that the researchers can
be sure they are addressing the
questions that the community
wants answered. According to Shari
another success of this project has
been to create opportunities for
women living with HIV to start new
careers, as the project employs these
women as research assistants and
project coordinators – I look back at
17 years ago and this would have been
unheard of.
Although progress has been
made in some ways, ‘in other ways,
we’re back at where we started from’, as
women living with HIV in Canada still
face a number of obstacles, and thus,
‘evidence-based advocacy continues to
be relevant and important’.
Shari Margolese, Coordinator for the
Women and HIV Research Program
of the Women’s College Research
Institute, Toronto
Shari she has been an AIDS
activist since she was diagnosed
in 1993. When asked how the field
has changed for women since
her early days as an activist, Shari
responded that in the beginning, ‘we
felt we were fighting for our lives; it was
very urgent and immediate’. Activism
and advocacy at this time focused
on making drugs available and
bringing them to market, a concern
that was shared by both women
and men. Now that drugs are widely
available in Canada, activists and
advocates have been able to focus
specifically on the needs of women
living with HIV. Shari has been
involved heavily in advocating for
the reproductive rights of mothers
living with HIV in the past, and she
is now turning her attention to
developing an ‘evidence base’ in this
area for fellow advocates and policy
makers.
As Shari notes, many women
living with HIV gave up their careers
when they were diagnosed in order
to become activists or volunteers
working in the field of HIV and AIDS.
These women are now at points in
their lives where they are returning
to the working world, partially out
of necessity in order to support
themselves and their families, but
also because now their health
allows them to do so. However, Shari
notes that when confronted with
this decision herself, she wondered,
‘what can I do in my professional life
that’s still going to be worthwhile?’.
She decided to continue working
in the HIV field with a new focus
on research. Relating to her current
job, Shari says, ‘I am now advocating
for the same things, I have been
advocating for before. I’m still doing
the same stuff, but I am busy creating
a ‘body of evidence’ that will lead to
policy change’.
Throughout our conversation,
Shari repeatedly emphasised the
importance of research on women
living with HIV and on developing an
evidence base. ‘It’s all well and good
to wave a banner, and we need to do
that, but if we don’t have any evidence,
it’s going to fall on deaf ears’. She also
pointed out that there is a real lack of
evidence around women living with
HIV, particularly regarding women’s
responses to medication.
Reflecting on the successes
of the Women and HIV Research
Programme, Shari believes that
linking relevant stakeholders –
community (service organisations
as well as people living with HIV),
infectious disease specialists, OB/
GYNS, academics, and policy
makers – has proven to be very
effective. Some stakeholders have
now become champions for the
cause, since they are involved in the
programme and know more about
… if we don’t
have any
evidence, it’s
going to fall on
deaf ears…
…we’re back
at where we
started from…