Demonstrating Leadership by Investing in People Living ... - SAfAIDS

Parl - HIV How-To-Card 3
A Resource for Parliamentarians
Demonstrating
Leadership by Investing
in People Living with HIV

Demonstrating Leadership by
Investing in People Living with HIV

What is the purpose of the How-to Cards for
parliamentarians?
The Parl-HIV “How-to Cards” support you as a member of Parliament with
practical HIV and AIDS information which you can use as a reference tool
during parliamentary debates and when engaging with constituency stakeholders.
They boost your HIV and AIDS knowledge and strengthen your oversight,
lawmaking and representational role in addressing HIV and AIDS issues
This card focuses on the critical strategy of building people-centred HIV
responses. Where the personal experiences of people living with HIV
(PLHIV) have been translated into helping to shape responses
to HIV, significant success has been recorded in
combating the pandemic.
What is MIPA?
Originally, the term ‘Greater Involvement of People Living
with HIV’ (GIPA), was used, but the preferred term now
is MIPA (Meaningful Involvement of People Living with
HIV). The principle was adopted by 42 countries at the
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1994 Paris AIDS Summit and formally adopted by UNAIDS in 1999,
demonstrates commitment towards recognising the role of people
living with HIV in building ethical and effective national, regional
and global responses to the epidemic. It is based on the premise
that people living with HIV understand each other's situation better
than anyone else and are often best placed to counsel one another
and to represent their needs in decision and policy-making forums.
Use of the term ‘meaningful’ offsets the risk that PLHIV will be
involved merely on a tokenistic basis, without real influence on
processes.
MIPA means investment
MIPA is built around a vision aimed at investing in
people living with HIV, investing in the capacity
building/advocacy role of PLHIV groups/networks,
investing in PLHIV leadership, and investing in
measurable accountability mechanisms.

Despite the efforts of the United Nations, little has been done to date to
integrate GIPA principles into regional and national responses. GIPA was
primarily promoted by a few individuals living with or affected by HIV and
AIDS. Often an individual goes public about their serostatus or their experiences
with the infection in the hope of giving it a human face and voice, and
altering the public’s attitude towards people living with the disease. GIPA
has tended to be tokenistic, thus the movement towards the meaningful
involvement of people living with or affected by HIV (MIPA). MIPA argues
that people affected or infected by HIV can make a meaningful
contribution to the response to the epidemic. Further to this,
it calls for the creation of space within society and existing
structures for the meaningful involvement and active
participation of people infected or affected by HIV, in all
aspects of HIV-related responses.
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Do people living with HIV have
rights?

Yes they do!
People living with HIV are entitled to the same human rights as everyone
else, as spelt out in the 1945 United Nations Human Rights Charter.
Such rights include the right to access appropriate services; gender equality,
self-determination and participation in decision-making which affects their
quality of life, and freedom from discrimination.
Rights come with responsibilities. In view of HIV, everyone has the right to
be safe and protected from infection and simultaneously has the responsibility
to prevent infecting or re-infecting another person with HIV. The wilful
In order for PLHIV to meaningfully access
their sexual and reproductive health
rights and responsibilities, governments
have an obligation to enact laws and
policies that protect the rights of PLHIV,
and subsequently provide structures and
mechanisms that allow PLHIV to access
these rights, as well as the appropriate
related goods and services
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transmission of HIV
needs to be avoided by
all in society to ensure that
the rights of people living
with HIV are protected. It
is the responsibility of all
(infected and affected) to
ensure that these rights
are observed and
protected.

Sexual and reproductive health
rights for PLHIV

Sexual and reproductive health rights for PLHIV have been a source of controversy
among key stakeholders, including governments, over the past few years.
People living with HIV have sexual and reproductive health rights and these
include the right to health care and information and the right to
nondiscriminatory availability and accessibility of health services.
Sexual and reproductive rights also include the right of all to make decisions
concerning reproduction, ‘free of discrimination, coercion, and violence’, as
expressed in human rights documents. Of central importance are the rights to
autonomy and privacy in making sexual and reproductive decisions, as well
as the right to informed consent and confidentiality in relation to health services.
How can you involve PLHIV in HIV and
TB responses?
People living with or affected by HIV can contribute to HIV and AIDS responses
at individual, organisational, national and regional levels. Their involvement
can be further harnessed in various facets of human livelihood, including sociocultural,
political and economic environments. The diagram below shows some
of the ways people living with HIV can be involved in this response.
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How can People Living with HIV be
involved?

How can people living with HIV be involved?
Treatment
roll-out and preparedness
People living with HIV support
treatment roll-out through educating
others on treatment options, side effects
and adherence, and are involved as
home-based and community
health-care workers.
Personal
People living with HIV are actively
involved in their own health and welfare.
They take an active role in decisions about
treatment, self education about therapies,
opportunistic infections and adherence,
and positive prevention.
Campaigns
and public speaking
People living with HIV are
spokespersons in campaigns or
speakers at public events
and in other arenas.
SOURCE: UNAIDS Policy Brief: The Greater involvement
of People Living with HIV/AIDS (GIPA) (2007)
Policy-making process
People living with HIV participate
in the development and monitoring of
HIV-related policies at
all levels.
Involvement
of People Living
with HIV
Programme
development and implementation
People living with HIV provide knowledge and
skills towards universal access through participation
in the governance of global organisations such as
UNAIDS and the Global Fund and in the choice,
design, implementation, monitoring and
evaluation of prevention, treatment,
care and support programmes
and research.
Advocacy
People living with HIV advocate
law reform, inclusion in the research
agenda and access to services, including
treatment, care and support; and for
the resource mobilisation for networks
of people living with HIV and for the
broader response.
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Leadership and support,
group networking and sharing
People living with HIV take leadership of
HIV support groups or networks, seek
external resources, encourage participation
of new members or simply participate by
sharing their experiences
with others.

What MIPA commitments have
governments from southern
Africa made?

The need for the meaningful involvement of people living with HIV and
AIDS (MIPA) was reaffirmed in:
• The Abuja Declaration on HIV and AIDS (2006): by emphasising
the human rights approach to HIV.
• SADC Maseru declaration on HIV and AIDS (2003): by
emphasising the human rights approach to HIV.
• Paris Declaration (1994): Committed governments to support the
greater involvement of PLHIV through an initiative to strengthen the
capacity and co-ordination of networks of PLHIV and communities.
• UNGASS 2001: 189 United Nations member countries endorsed the
GIPA Principle as part of the Declaration of Commitment on HIV and
AIDS. It urges PLHIV to move away from just giving the epidemic a
human face and voice to truly participating in the development and
implementation of multi-sectoral strategies needed to fight AIDS. The
declaration offers PLHIV a platform for advocacy and recognises that
the protection of human rights of PLHIV is an essential element in the
global response to AIDS.
• The 2006 Political Declaration on HIV unanimously adopted by
192 Member States at the 2006 UN High Level Meeting on AIDS also
advocated the greater involvement of people living with HIV.
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What are the key challenges to
the implementation of the MIPA
principle?

Although there is generally increased awareness of the need to
uphold the rights of PLHIV across the southern Africa region, some
challenges still remain in practicing the MIPA principle. These include:
• Participation of PLHIV: The limited participation of PLHIV in
decision-making is still far from universal. The reality is particularly
grim in the southern African region. This is due to a lack of understanding
among many decision makers about MIPA and the lack of a supportive
environment, conducive to empowerment of PLHIV and their groups.
It is probable that many infected individuals are in decision-making
positions in the region, but are unable to enact MIPA principles because
they have not felt able to disclose their status.
• Fear of disclosure: The largest obstacle to the operationalisation of
the MIPA principle remains the stigma so often experienced by those
who disclose their serostatus in the attempt to raise the visibility of
PLHIV. The fear of disclosure often silences potential new voices, thus
leaving a situation where very few PLHIV are doing an enormous
amount of work.
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• Violation of human rights: Stigma and discrimination has a direct
bearing on human rights, the safeguarding of which is an essential part
of responding effectively to the HIV pandemic at individual, national,
regional and global levels. HIV strikes the hardest where human rights
are the least protected, particularly among people and communities
on the margins of society, including women, children and other high
risk groups. Conversely, safeguarding people's fundamental rights
improves their ability to protect themselves and others at risk of HIV
infection and assists them in dealing with the impact of the epidemic.
• Access to treatment: Knowledge of HIV status is the gateway to HIV
treatment and other services and has documented prevention benefits.
However, the current reach of HIV testing services is severely limited
and uptake is often low, largely because of the fear of stigma and
discrimination. Where governments have enacted policies that promote
the participation of PLHIV as lay counsellors and treatment literacy
supporters in formal health care settings, wider coverage of programmes
has been recorded.

• Lack of capacity: It is also important to note that the needs for
effective MIPA are not being systematically matched to the capacity of
individual PLHIV. As a result even in instances where they are given
influential positions they may fall short of effective delivery. Having
HIV is an experience, not a skill. There is huge need for skills-building
of PLHIV to empower them to engage meaningfully in national HIV
responses, and to be most effective in their new roles, whether they be
in peer counselling or policy-making.
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Is MIPA of national importance?

Yes – MIPA is of tremendous importance. People living with HIV
constitute a significant portion of the population in southern Africa. In countries
like Lesotho, Swaziland and Botswana, more than a quarter of their total
populations are living with HIV. Government programmes and interventions
need to actively engage PLHIV in all plans they design in responding to HIV
and related TB national concerns.
What is the role of parliamentarians in promoting
MIPA?
Members of parliament have a constitutionally mandated oversight function
on HIV and AIDS policy issues. It is important for parliamentarians to ensure
that the MIPA principle is implemented at both regional and national levels
through the following ways/strategies:
• Include MIPA in the National AIDS Policy. Undertake a baseline survey
for measuring MIPA and stigma and discrimination and include MIPA
within the national monitoring and evaluation system.
• Advocate for national and local government budgets to reflect a greater
investment in PLHIV. Members of parliament can introduce
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the self assessment tool developed for MIPA in parliament as a way to
measure government commitment towards the MIPA principles (see
the Further Reading list)
• Enable people living with HIV to claim their rights and meet their
responsibilities by creating a supportive legal and policy environment
that also protects them from discrimination and violence. Strengthen
public policy dialogue on HIV.
• Promote the adoption of workplace policies in the formal and informal
sectors, following the International Labour Organization (ILO)
recommendations.
• Support the creation and strengthening of organisations of people
living with HIV in addressing infrastructure, governance, management,
resource mobilisation, accountability and staff skill-building needs.
Universal access to HIV prevention, treatment, care and support by
2010 and the Millennium Development Goals cannot be fully achieved
if those infected (and affected) by HIV remain peripheral to the
response to the pandemic

Further reading on MIPA
1. Paris Declaration, 1994
2. SADC Maseru Declaration on HIV and AIDS, 2003
3. Abuja HIV and AIDS Declarations 2001 and 2006
4. UNGASS Declarations 2001 and 2006
5. United Nations Millennium Development Goals, 2000
6. The Greater Involvement of People Living With HIV, UNAIDS, 2007
7. Global Consultation on the Sexual and Reproductive Health and Rights
(SRHR) of People Living with HIV, Consultation Report, GNP+, ICW, 2007
8. UNAIDS Best Practice Series: The Positive Partnerships Program in Thailand:
Empowering People Living with HIV, 2007
9. The HIV/AIDS Declaration of Commitment, UNGASS, 2008
10. Self Assessment Checklist - MIPA - The NGO code of Good Practice,
www.hivcode.org
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Produced by the SAfAIDS Regional Policy Desk
For more information contact SAfAIDS:
479 Sappers Contour, Lynwood, Pretoria 0081, South Africa
Tel: (+27)-12-361-0889, Fax: (+27)-12-361-0899,
E-mail: policydesk@safaids.net, Website: www.safaids.net