Feature Story

Supporting the active engagement of people living with HIV in the AIDS response is one of UNAIDS’ most important goals. Building on its work in this area, UNAIDS has developed a policy brief with recommendations for governments, civil society and international donors on how to increase and improve the involvement of people living with HIV in global, regional and country AIDS responses.

Nkensani Mavasa from South Africa addressing the United Nations
General Assembly on HIV and AIDS in New York. Credit: UNAIDS/J.Rae

GIPA or the ‘Greater Involvement of People Living with HIV/AIDS’ is a principle that aims to realize the rights and responsibilities of people living with HIV, including their right to participation in decision-making processes that affect their lives. GIPA aims to enhance the quality and effectiveness of the AIDS response and is critical to progress and sustainability.

The idea that personal experiences should shape the AIDS response was first voiced by people living with HIV in Denver in 1983. The GIPA Principle was formalized at the 1994 Paris AIDS Summit when 42 countries agreed to “support a greater involvement of people living with HIV/AIDS at all levels and to stimulate the creation of supportive political, legal and social environments”.

GIPA seeks to ensure that people living with HIV are equal partners and breaks down simplistic and false assumptions that those living without HIV are “service providers” and as those living with HIV are “service receivers”.

The new UNAIDS policy brief gives an overview of the context for the policy brief, underlines why this principle is key to the long-term sustainability and development of the AIDS response, highlights some of the challenges to achieving GIPA and outlines a number of actions governments and other bodies need to implement to ensure the principle is put into practice.

“No single agency can provide for the full spectrum of needs of people living with HIV: partnerships between actors are therefore needed,” says Kate Thomson, UNAIDS GIPA focal point. “To enable the active engagement of people living with HIV, UNAIDS urges all actors to ensure that people living with HIV have the space and the practical support for their greater and more meaningful Involvement.”

Governments, international agencies and civil society are urged to implement and monitor minimum targets for the participation of people living with HIV, including women, young people and marginalized populations, in decision-making bodies.

The policy brief also underlines that selection processes should be inclusive, transparent and democratic and that people living with HIV should be involved in developing funding priorities and in the choice, design, implementation, monitoring and evaluation of HIV programmes from their inception. “The engagement of people living with HIV is all the more urgent as countries scale up their national AIDS responses to achieve the goal of universal access to prevention, treatment, care and support services,” states the brief.

Wide ranging benefits

Measuring involvement of people living with HIV in policy is not an easy or exact science; yet, experiences have shown that when communities are proactively involved in ensuring their own well-being, success is more likely. People living with HIV have directly experienced the factors that make individuals and communities vulnerable to HIV infection. As a result, their involvement in programme development and implementation and policy-making will improve the relevance, acceptability and effectiveness of programmes.

An HIV positive woman addressing students at the University of Beijing,
People's Republic of China, during a session organized by a local NGO
to raise AIDS awareness. Credit: UNAIDS/K.Hesse

“Positive people bring the unique perspective of their experience to the range of organizations and agencies working in AIDS, “ says Dr Keven Moody, International Coordinator for the Global Network of People Living with HIV and AIDS, GNP+.

As the policy brief underlines, the benefits of GIPA are wide ranging. At the individual level, involvement can improve self-esteem and boost morale, decrease isolation and depression, and improve health through access to better information about care and prevention. Within organizations, the participation of people living with HIV can change perceptions, as well as provide valuable experiences and knowledge. At the community and social levels, public involvement of people living with HIV can break down fear and prejudice by showing the faces of people living with HIV and demonstrating that they are productive members of, and contributors to, society.

“The participation and contribution of people living with HIV is one of the best examples of global progress in public health. We have come from a place where people openly living with HIV were stoned to death, to a place where we have been invited to stand among the leaders of the world to shape international policies,” said Gracia Violeta Ross, the National Chiar of the Bolivian Network of People Living with HIV/AIDS. “There is still a long way to walk but we have made historical changes and gains of which we can be proud,” she said.

From principle to action: Leading by example

The policy brief draws on examples of policy makers, county and community actions that are transforming GIPA from principle to action. In Tanzania, nearly 80% of Tanzanian parliamentarians are dues-paying members of the Tanzanian Parliamentarians’ AIDS Coalition (TAPAC). Putting the principle into practice, TAPAC engages people living with HIV as advisers and organizes regular roundtable meetings with them to discuss issues. TAPAC members meet people living with HIV in their constituencies and publicly speak up in favour of GIPA. “You cannot plan for [people living with HIV]; you have to plan with them! Political leaders have to stand up for the rights of people living with HIV by enacting laws, budgeting for programmes and also by speaking up in ways that will normalize HIV,” said the Honourable Lediana Mafuru Mng’ong’o, Member of Parliament, Tanzania, Chair of the Coalition of the African Parliamentarians against HIV/AIDS and the Tanzanian Parliamentarians’ AIDS Coalition, who’s ‘voice’ is featured in the UNAIDS policy brief.

“If we want to win the battle against HIV, the full participation of people living with HIV in the AIDS response is necessary. At the same time, people living with HIV need to stand united, they need to strengthen their organizations and they need to speak with one voice in order to influence policy makers and to realize GIPA,” he added.

Russian civil society networks, including people living with HIV, during a
workshop on community-based advocacy and networking to scale up HIV
prevention. Credit: UNAIDS/S. Drakborg

Similarly i n Kazakhstan-also featured in the policy brief— there is a growing movement to engage people living with HIV in the response. Today, the country’s national and local level strategic planning and monitoring and evaluation processes actively engage people living with HIV.

But a s Dr Yerasilova Isidora, Director General, the Republican AIDS Centre (National AIDS Programme) outlines in the policy brief, the involvement of people living with HIV is not always straightforward, or welcomed. In Kazakstan the majority of people living with HIV are injecting drug users and sex workers and involving them in the response is often met with mistrust and opposition. Nevertheless, policy makers have taken a stand and pushed forward the agenda.

“We have managed to identify several partners [among groups and networks of people living with HIV] and have supported them by developing their personal and institutional capacities to become proactive and to make their voices heard,” she explains in the brief. Slowly but surely, Kazakstan is seeing results: In Temirtau, the city facing the largest HIV epidemic in Central Asia, more people living with HIV are openly talking about their status, which is improving public understanding and reducing stigma.

“Positive people have a great deal to contribute towards the challenges posed by AIDS, if they are given the opportunity to spell out their needs on an equal platform with government and non-government organizations.”