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TitleThe Involvement of People Living with HIV/AIDS in Community-based Prevention, Care and
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The Involvement of
People Living with
HIV/AIDS
in Community-based Prevention,
Care and Support Programs
in Developing Countries

A Multi-country Diagnostic Study

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Acknowledgements

Authors

Christophe Cornu, International Study Coordinator and Principal Investigator, International
HIV/AIDS Alliance; Kathy Attawell, Consultant Editor.

Research Teams

Burkina Faso: Alfred Ouédraogo (Research Coordinator); Gisèle Kaboré, Augustin Sankara,
Soungalo Traoré (Research Assistants)

Ecuador: Doris Herrera and Norma Velasco (Research Officers); Alejandrina Maldonado (Research
Assistant)

India: Rajiv Dua (Research Coordinator); Vimla V. Nadkarni (Principal Investigator/Technical
Advisor for India); Bindiya Nimla (Research Officer); Vaishali Sharma Mahendra (Horizons India
Study Coordinator) at the regional Horizons/Population Council office in Delhi; Ujwala Bapat,
Suchitra Inamdar and Neha Sachdev (Research Assistants); William Monteiro (Office Assistant)

Zambia: Tashisho Chabala (Research Officer); James Sulwe (Data Collection Coordinator); David
Mwanza, Justina Namukombo, Eric Shimumbwe, Agatha Zulu Wachinga (Research Assistants)

United Kingdom: Pam Decho (Project Support Officer)

United States: Christopher Castle (Horizons Study Coordinator)

Partner Organizations

We wish to thank the management, staff members, volunteers and service users of the 17
community-based organizations and non-governmental organizations who participated in the study
in four countries:

Burkina Faso: AAS; ALAVI; AMMIE; La Bergerie-Foi, Univers, Compassion; REVS+

Ecuador: Dios, Vida y Esperanza; Esperanza; Siempre Vida; Vivir

India: CCDT; MNP+; Salvation Army Mumbai HIV/AIDS Community Development Program;
SOFOSH

Zambia: CHEP; Hope Humana; Kara Counselling; Salvation Army Chikankata Hospital

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In some organizations, PLHA are also consulted about other services, but their opinions and
decisions affect only the “therapeutic” level and involvement is limited to “planning their own
care”. This applies to the inclusive model of involvement, and sometimes access, when the opinion
of service users is taken into account by an NGO. For example, Salvation Army support-group
participants in India requested, and now can obtain, homeopathic treatment at the Byculla center.

Yes, they come forward to put their views. For example, before doing our
strategies, we have this support group. So we put forth to them what actually we
want to do, what we are trying to do, and take their ideas and what their
expectations are from us; what they want to see should happen, what they
would like to see which will help people living with HIV/AIDS. I mean, we take
those suggestions into consideration when we design our programs.
(Service provider, Salvation Army, Mumbai, Maharashtra, India)

At the “operational” level, the study observed that PLHA who plan day-to-day services are more
likely to be those who are employed by the organization, as in Zambia and India, or are regular
volunteers, as in Burkina Faso and Ecuador (participation). At Hope, for example, the Positive
Living Advocate prepares her own schedule, raises funds and is responsible for managing her own
budget. These PLHA have usually received more training and are more experienced and
autonomous than PLHA whose involvement is inclusive. However, with exception of rights-based
organizations, including those founded and run by PLHA, the direct involvement of most HIV-
positive service providers in the design and planning of programs is limited to the services they
deliver.

Involvement of HIV-positive service providers in the design and planning of other services
generally only applies in NGOs where there is greater involvement and where other PLHA manage
a program or the organization itself. In India, for example, MNP+ HIV-positive staff are involved in
the planning and design of all activities, together with the HIV-positive trustees of the organization.
In Zambia, the coordinator of the PLHA program at CHEP and his assistant, who are both HIV
positive, are invited to inform the design and planning of other CHEP services, in addition to the
ones they deliver themselves or supervise.

4.9.2 PLHA managing organizations

With few exceptions, visible PLHA are not involved in NGO management, policymaking and
strategic planning (“strategic” and “governance” levels of decision-making). This type of
involvement is most likely to be observed in rights-based organizations, mostly groups or networks
of PLHA, and to a lesser extent in NGOs with a focus on empowerment and development of their
beneficiaries.

Greater involvement manifests itself in two ways: when PLHA are employed by organizations and
hold management positions, or when they are volunteers and belong to strategic decision-making
bodies, such as boards of trustees. As noted above, the coordinator of the PLHA program at CHEP
is HIV positive, and he is involved in the organization’s annual strategic planning review. At Kara,
the coordinator of the outreach program is HIV positive, and he is involved in the organization’s
strategic planning. Kara is also planning to institute a board of directors, which will include a PLHA
representative. At MNP+, all three trustees – responsible for management, policymaking and

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strategic planning – are PLHA. MNP+ was established by PLHA and has also given preference to
recruitment of HIV-positive staff. In Burkina Faso, the president of REVS+ is a woman living with
HIV.

Other NGOs have taken steps to develop the skills of PLHA employees, to enable them to take on
additional management responsibilities and to move from participation towards greater
involvement. For example, Hope has enrolled the full-time Positive Living Advocate in a six-month
management course (see Chapter 6).

The PLHA programme at CHEP: an opportunity for HIV positive staff to
share experiences with colleagues

4.9.3 PLHA advocates: Social voices

As described earlier, PLHA can be individual and collective voices, telling their stories as living
examples and speaking on behalf of other PLHA as experts. They are also powerful social voices
when they advocate for the rights of HIV-positive people, and greater involvement in NGOs cannot
be separated from greater involvement in policies at national and international level. PLHA who
manage programs and organizations usually have a significant representative role outside the NGO
with which they are involved, expressing the position of PLHA in general in various forums. In
Zambia, HIV-positive coordinators at CHEP and Kara are or have been the chair of the national
network of positive people. Trustees of MNP+ also have responsibilities in the national network of
PLHA (INP+), as most active HIV-positive volunteers of Siempre Vida and Dios, Vida, Esperanza
do in Ecuador. The first PLHA who came out on publicly on television in Burkina Faso was a
member of the executive committee of REVS+.

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• Promotion of and access to various culturally acceptable prevention strategies and products,
including condoms and treatment of sexually transmitted diseases.

• Promotion of appropriate prevention education, including sex and gender education, for youth
in school and out of school.

• Improvement of women’s status, educational and living conditions.
• Specific risk-reduction activities for and in collaboration with the most vulnerable populations,

such as groups at high risk of sexual transmission and migrant populations.
• The safety of blood and blood products.
• Strengthen primary health care systems as a basis for prevention and care, and integrate

HIV/AIDS activities into these systems, so as to ensure equitable access to comprehensive care.
• Make available necessary resources to better combat the pandemic, including adequate support

for people infected with HIV/AIDS, nongovernmental organizations and community-based
organizations working with vulnerable populations.

IV. ARE RESOLVED TO STEP UP THE INTERNATIONAL COOPERATION THROUGH THE
FOLLOWING MEASURES AND INITIATIVE. We shall do so by providing our commitment and
support to the development of the joint and co-sponsored United Nations program on HIV/AIDS, as
the appropriate framework to reinforce partnerships between all involved and give guidance and
worldwide leadership in the fights against HIV/AIDS. The scope of each initiative should be further
defined and developed in the context of the joint and co-sponsored program and other appropriate
fora:

1. Support a greater involvement of people living with HIV/AIDS through an initiative to
strengthen the capacity and coordination of networks of people living with HIV/AIDS and
community-based organizations. By ensuring their full involvement in our common response to the
pandemic at all – national, regional and global – levels, this initiative will, in particular, stimulate
the creation of supportive political, legal and social environments (…).

7. Strengthen national and international mechanisms that are concerned with HIV/AIDS related
human rights and ethics, including the use of an advisory council and national and regional
networks to provide leadership, advocacy and guidance in order to ensure that non-discrimination,
human rights and ethical principles form an integral part of the response to the pandemic (…).

Countries which were represented at the Paris Summit and signed the Declaration:

Argentina, Australia, Bahamas, Belgium, Brazil, Burundi, Cambodia, Cameroon, Canada, China,
Côte d’Ivoire, Denmark, Djibouti, Finland, France, Germany, India, Indonesia, Italy, Japan,
Mexico, Morocco, Mozambique, Netherlands, Norway, Philippines, Portugal, Romania, Russian
Federation, Senegal, Spain, Sweden, Switzerland, United Republic of Tanzania, Thailand, Tunisia,
Uganda, United Kingdom, United States of America, Vietnam, Zambia, Zimbabwe

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The Denver Principles – Statement written in June 1983 by the National Association of People
with AIDS (USA)

We condemn attempts to label us as “victims”, a term which implies defeat, and we are only
occasionally “patients”, a term which implies passivity, helplessness, and dependence upon the care
of others. We are “People with AIDS”.

Recommendations for All People

Support us in our struggle against those who would fire us from our jobs, evict us from our homes,
refuse to touch us or separate us from our loved ones, our community or our peers, since available
evidence does not support the view that AIDS can be spread by casual, social contact.

Not scapegoat people with AIDS, blame us for the epidemic or generalize about our lifestyles.

Recommendations for People with AIDS

Form caucuses to choose their own representatives, to deal with the media, to choose their own
agenda and to plan their own strategies.

Be involved at every level of decision-making and specifically serve on the boards of directors of
provider organizations.

Be included in all AIDS forums with equal credibility as other participants, to share their own
experiences and knowledge.

Substitute low-risk sexual behaviors for those which could endanger themselves or their partners;
we feel peple with AIDS have an ethical responsibility to inform their potential sexual partners of
their health status.

Rights of People with AIDS
To as full and satisfying sexual and emotional lives as anyone else.

To quality medical treatment and quality social service provision without discrimination of any
form including sexual orientation, gender, diagnosis, economic status or race.

To full explanations of all medical procedures and risks, to choose or refuse their treatment
modalities, to refuse to participate in research without jeopardizing their treatment and to make
informed decisions about their lives.

To privacy, to confidentiality of medical records, to human respect and to choose who their
significant others are.

To die – and to LIVE – in dignity.

This statement is considered as a founding text for the PLHA self-empowerment movement.

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