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EMPOWERMENT OF PEOPLE LIVING
WITH HIV/AIDS |
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| Introduction |
| The
emergence of the Greater Involvement of PLWHA (GIPA) Principles |
| Asia
Pacific Region: Involvement of PLWHA |
| UNDP's
Response |
| Empowerment of PLWHA: A Third Generation Response to HIV? |
| Links
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| Introduction |
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| Today, it is internationally recognised that a crucial goal
and hallmark of HIV/AIDS advocacy is the meaningful involvement
of People Living with HIV/AIDS (PLWHA) in all aspects of programmatic
and policy related responses. During the early phase of the
HIV epidemic, PLWHA helped each other and drew support from
friends, family and sympathetic community members. However,
the medical, public health and research establishments took
time to get acculturated to bringing the PLWHA into decision-making
and planning. |
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| Experiences from around the world make it clear that no community
or country can tackle the negative fall-out of HIV/AIDS without
building on the strengths and the first hand knowledge of those
living with the infection. In countries where PLWHA have taken
the initiative to mount constructive responses, such as Brazil,
Thailand and Uganda, there has been a slow-down in new infections
and a more sensitive approach to care has emerged. |
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| The strategic change from top-down to more participatory
approaches not only meant the inclusion of PLWHA but also youth,
communities and especially vulnerable populations in the design
and implementation of responses to HIV/AIDS. Although this approach
has still to become the norm in all efforts to contain the HIV
epidemic and provide care and support to those infected and
affected by HIV/AIDS, there has been a clear movement towards
adopting it. Policies, projects and initiatives of this kind
could be categorised as the 'second generation response' to
HIV/AIDS. |
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| The emergence of the Greater
Involvement of PLWHA (GIPA) Principles |
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| The idea that the personal experiences of PLWHA could and should shape the response to the epidemic found a public voice in 1983 when a small band of PLWHA gathered at a national medical conference on AIDS in Denver, Colorado, protesting their exclusion from the planning process of workshops related to AIDS. There, positive activists announced a set of principles destined to revolutionise the way the world responds to an epidemic. The “Denver Principles” set forth standards for human rights and self-empowerment in a health crisis. |
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| The Denver Principles include: |
- A refusal to be ‘victims’;
- A request for support from all people;
- A plea against stigma & discrimination;
- A call to all positive people to choose:
1 to be involved at all levels of decision making;
2 to be included in all AIDS forums;
3 to be responsible for their own sexual health & to inform all their partners of their HIV status.
- A demand for:
1 a full & satisfying sexual & emotional life;
2 provision of quality medical treatment & social service;
3 full explanations of medical procedures and risks & the right to choose or refuse treatment;
4 privacy & confidentiality of medical records & disclosure;
5 the right to die & live in dignity.
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| The acronym GIPA was publicly vocalised for the first time
during the preparatory meetings of the Paris AIDS Summit in
1994. The term was used in the Declaration that was signed by
representatives of 42 countries which undertook to "fully
involve...People living with HIV/AIDS in the formulation and
implementation of public policies…" and to "…support
the greater involvement of people living with HIV/AIDS (GIPA)."
The principles of GIPA were later reinforced by the UNGASS Declaration
in 2001 signed by almost all members of the United Nations.
They have been adopted by UNAIDS and GIPA is presently an integral,
indispensable part of all major international declarations pertaining
to the epidemic. |
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| GIPA PRINCIPLES |
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- To support the greater involvement of people living
with HIV and AIDS (PLWHA) through initiatives to strengthen
the capacity of and coordination of networks of PLWHA
and CBOs stimulating the creation of a supportive
political, legal and social environment;
- To involve PLWHA fully in decision making, formulation
and implementation of public policies;
- To protect and promote the rights of individuals,
in particular those living with or most vulnerable
to HIV/AIDS, through legal and social environments;
- To make available necessary resources to better
combat the pandemic including adequate support for
PLWHA, NGOs and CBOs working with vulnerable and marginalized
populations;
- To strengthen national and international mechanisms
connected to human rights and ethics related to HIV/AIDS.
Declaration of the Paris AIDS Summit,1 December
1994.
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| Asia Pacific Region: Involvement
of PLWHA |
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| For most countries in the Asia Pacific region where the HIV
epidemic has not yet matured, the first generation, top down
interventionist responses still dominate efforts to stem the
spread of HIV or care for those affected. |
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| In the Asia Pacific region where the majority of PLWHA live
in constant fear, battling stigma and discrimination in their
daily lives, the criticality of Greater Involvement of People
Living with HIV/AIDS (GIPA) as a strategy to alleviate their
condition cannot be overstated. Public visibility of the active
involvement of PLWHA at all levels can challenge existing HIV
related myths and derogatory stereo-typing and help reduce stigma
and discrimination. GIPA can promote a positive shift in the
way society perceives PLWHA and can sow the seeds for an enabling
environment wherein PLWHA, their families and communities may
live with self respect and dignity. |
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| Outcomes of GIPA |
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| Despite promotion of the GIPA Principle, there is still relatively little commitment to involving and integrating positive people in programs providing AIDS care, support, prevention and education. Few government and non-government organisations pro-actively include positive people in their responses to HIV/AIDS at national or local levels. Many of the positive activists who are involved in the sector come to feel exploited rather than inspired by their role. Many suffer burnt out and, without access to appropriate medication, care or support, become critically ill and withdraw from active involvement. There is often a lack of financial support for positive people’s groups, and groups that receive funding are frequently driven by their donors instead of by their needs. GIPA has become yet another acronym and the true meaning and realisation of GIPA has been lost. |
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| UNDP's response |
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| UNDP had been working with HIV since the late eighties and
was quick to adopt the principle of participation, and initiate
second generation responses to the HIV epidemic. One of UNDP's
earliest projects addressed GIPA successfully and was implemented
in South Africa in the late nineties where the epidemic was
already characterised by a very large number of PLWHA. Two key
events provided the rationale for involvement. In 1997, a review
of the country's HIV/AIDS Plan (1994-1997) found that levels
of HIV/AIDS related stigma and discrimination were unacceptably
high. The GIPA principle was proposed as being crucial to effective
HIV/AIDS prevention and management, and it was recommended that
steps be taken to improve the acceptance and support of PLWHA.
In the following year came a call by the then Deputy President,
Thabo Mbeki to all sectors of South African society to form
a partnership against AIDS. At the time, very few PLWHA knew
or were public about their HIV status. UNDP worked in partnership
with the Government, civil society and the private sector to
initiate the GIPA Workplace Model in South Africa. It also provided
an opportunity for the corporate sector to play a noteworthy
role in the partnership on HIV/AIDS. The need for businesses
to respond was also justified by research findings that detailed
the severe extent to which business and the broader economy
would be impacted by HIV/AIDS. |
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| Though, there is increasing recognition of the importance
of PLWHA involvement in the campaign against the HIV epidemic,
responses in the Asia Pacific region have not yet accorded adequate
importance to the need for involvement and empowerment of PLWHA
in prevention efforts. |
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| The vast majority of countries in the Asia Pacific region
are in the early stages of the epidemic the lessons learned
from Africa have not been immediately replicable. Therefore,
a pilot project focusing on the five South Asian countries -
Bangladesh, India, Nepal, Pakistan and Sri Lanka - was initiated
in 2001, named the Greater Involvement of People Living with
HIV/AIDS (GIPA) Project. The project aimed at meaningful participation
of PLWHA in response to HIV/AIDS in South Asia and was implemented
jointly by Sahara - a New Delhi based NGO and UNDP, through
the establishment of a close partnership with 17 PLWHA groups
in the sub-region. This was the first regional project aimed
at raising the profile of GIPA in South Asia. It also hoped
to build a participatory process where the PLWHA groups identified
activities in the areas of organisational development, awareness
building and sensitisation, care and support activities and
employment - issues which they felt were crucial for enhancing
their capacity to gain influence. The project provided a unique
opportunity for PLWHA to network and implements small-scale
activities together and signalled the beginning of extensive
networking among PLWHA across the Asia Pacific region. By the
close of this pilot project in the spring of 2002, the process
of learning about GIPA and the difficulties of implementing
these principles had already begun. |
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| Re-examining the principles of
Greater Involvement of PLWHA |
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| Three years of work by UNDP and its partners has brought
about greater awareness of the GIPA Principles in the region.
Yet, the conditions in which PLWHA exist have shown little change.
Many PLWHA have expressed the frustration that although GIPA
was an integral part of international declarations relating
to HIV/AIDS and national policies, the intent of the principles,
namely, to improve responses to HIV/AIDS and better the situation
of PLWHA, has not been realised. PLWHA are still not fully included
in prevention and care responses and all too often, their inclusion
is a token one. |
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| With the support of UNDP and its partners, PLWHA from the
region have been able to exchange their perceptions about GIPA
and share their experiences. Many are outspoken about the problems
they face in the field and are unanimous in their conclusion
that the implementation of GIPA has failed to live up to their
expectations. |
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| The implementation of the GIPA principles would bring about
their meaningful empowerment at all levels, enabling them to
address their basic needs. The GIPA Project identified some
of these needs as being: |
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- Access to information on HIV-related issues; testing facilities
where confidentiality is respected; counselling services,
quality treatment and community care;
- Skills to live positive lives and opportunities to ensure
sustainable livelihoods for them and their families; and
- Capacity to carry out advocacy and make an impact on the
epidemic reducing stigma and discrimination in an atmosphere
where people can work together for a better future, regardless
of their sero-status.
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| The lack of initiative on the part of NGOs and
governments to implement GIPA is of concern to PLWHA. Many PLWHA
have expressed anxiety that NGOs neither understand the need
for independent and strong PLWHA groups, nor believe that PLWHA
have the potential to become an equal partner, given their limited
capacity. Governments, while adopting sensitive policies, face
difficulties in implementation in many countries of the region.
At the same time PLWHA groups have recognised that they need
significant strengthening of their organisations and members
in order to breathe life into the GIPA principles. The culmination
of the piloted GIPA-Project yielded a vision statement formulated
by all the PLWHA from South Asia who participated in the pilot
phase. |
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| Empowerment of
PLWHA: A Third Generation Response to HIV? |
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| The learning from the pilot phase of the GIPA-Project is
that a new GIPA initiative needs to be developed - one that
shifts the focus from the limited understanding of GIPA as "genuine
involvement" to an expansive vision aimed at the overall
empowerment of all PLWHA, their groups and networks. |
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| The pilot phase had made it apparent that PLWHA did not view
GIPA as an end in itself, but as a tool to achieve the objectives
they had set for themselves and their networks. This distinction
was crucial in formulating the next phase of the project. Named
the Asia Pacific Initiative for Empowerment of PLWHA, the second
phase of the GIPA project was conceived as a three-year effort
and initiated in the summer of 2002. Despite the global acceptance
of the GIPA principles expressed in the Paris AIDS Summit Declaration
as well as the international guidelines on HIV/AIDS and human
rights, it had become painfully clear to PLWHA that even when
implemented, GIPA by itself would not stimulate a change in
their living conditions. In some instances, PLWHA felt that
they were being 'used' by civil society and that their representation
in official committees did not necessarily translate into a
truly significant manifestation of their rights or influence. |
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| Empowerment of PLWHA: The Future |
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| Many groups are now establishing their own independent Positive Speakers’ Bureau. They are going out and pro-actively educating others about HIV and making a change. Some groups have voiced their desire to set up their own voluntary counselling and testing centres although wherever it has been suggested in Asia, it has faced resistance. |
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| We need to encourage more women to be involved. Widows and single women face the impact of AIDS-related stigma and discrimination. Many have dependant children and little income, yet they are often the most passionate and committed educators, and those who go public do so sooner after their diagnosis than men do (Paxton, 2002b). So harness the skills of women. They may be the most important element of GIPA. |
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| We need to see more and more positive people with the skills, ability, confidence, willingness and the mandate to take part in decision-making bodies, voice their needs of access to information, education, treatment, care and support. We need people who can articulate the rights of all people to lead productive lives in dignity, advocate for the right to optimal health, including sustained access to antiretroviral drugs, and advocate for the right to earn a living and to run income generation projects and have access to micro-credit schemes. |
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| When people with HIV have the same rights as all citizens, when they can live in dignity, without fear of discrimination, when they are able to sustain their families and organisations and are provided with all the skills necessary to take on the role of equal partnership in the response to HIV/AIDS, then we can expect them to take on the responsibilities that GIPA implies. |
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