Dimapur, August 2 (MExN): Greater Involvement of People Living with HIV and AIDS (GIPA) means recognising the important contribution people living with HIV and AIDS can make in response to the epidemic. It also means creating space within the society for our involvement and active participation in all aspects of that response. GIPA is not a project or programme but is a principle that aims to realise the rights and responsibilities of people living with HIV to self-determination and participation in decision-making processes that affect their lives. In these efforts, GIPA also aims to enhance the quality and effectiveness of HIV responses.
The GIPA Principles of the 1994 Declaration of the Paris AIDS Summit saw forty-two countries commit to actions to support a greater involvement of people living with HIV and AIDS through an initiative to strengthen the capacity and coordination of networks of people living with HIV and AIDS and community based organisations by ensuring their full involvement in our common response to the pandemic at all national, regional and global levels. This initiative was taken up in particular to stimulate the creation of supportive political, legal and social environments.
This Declaration provides for the formation and strengthening of groups and networks of positive people to ensure their full involvement in response to issues and problems surrounding the HIV pandemic. It also stands to determine to mobilise all of society – the public and private sectors, community based organisations and people living with HIV and AIDS – in a spirit of true partnership.
GIPA is important for the reason that people living with HIV have directly experienced the factors that make individuals and communities vulnerable to HIV infection – and once infected, the HIV-related illnesses and strategies for managing them. PLHIV have firsthand experience of services offered through care and support programme including ART, ICTC and PPTCT services. They also understood the need for enabling legal and policy environment which enables people (positive or not) to access information and support, develop skills and live with dignity. They can therefore be instrumental in design and implementation of effective and sensitive skills. PLHIV involvement in programme development and implementation and policy-making will improve the relevance, acceptability and effectiveness of programme. PLHIV understand each other's situation better than anyone and are often best placed to counsel one another and to represent their needs in decision- and policy-making forums. GIPA seeks to ensure that people living with HIV are equal partners and breaks down simplistic (and false) assumptions of “service providers” (as those living without HIV) and “service receivers” (as those living with HIV).
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.
PLHIV may need support in managing this process and choosing to whom, when and how they disclose their status. However, disclosure can also reinforce prejudices, for example, against homosexuals or based on race. GIPA does not require disclosing one’s HIV status to the public. It does not mean “no visibility = no involvement.” GIPA is about “meaningful involvement,” not tokenistic participation. People living with HIV are the experts on their own lives and can provide essential information and insights to make HIV programs effective. PLHIV are the best person in solving the problems of their own lives. PLHIV can cntribute to expertise their valuable and productive ideas which would counteract the stigma and discrimination often face in daily lives.
Benefits in involving People Living with HIV (PLHIV):
• 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. Openly acknowledging one’s HIV-positive status demolishes myths and misconceptions about HIV and people living with HIV. Disclosing one’s status can be an empowering process if it starts by combating internal stigma and shame.
• Make services more relevant and personalized
• Make all kinds of interventions (e.g., prevention messages, adherence to treatment counselling) more credible and compelling to the target group
• Raise awareness of issues from a PLHIV perspective, leading to the extension of activities to include advocacy for the rights of PLHIVs.
• Increase the self-confidence, physical health and sense of well-being amongst the PLHIVs involved
• Reduce the stigma attached to and discrimination against PLHIVs amongst AIDS workers, clients of services and communities at large
• Instead of developing policy and planning services by “them” for “us”, with all the possibilities for misunderstanding and misinformation that this creates, policy and planning can be done together in partnership.
Barriers to implement GIPA:
• Limited understanding of GIPA
• Difficulty in acknowledging the contribution of people living with HIV
• Assumption that PLHIVs does not have the skills
• Stigma and Discrimination limits contribution of PLHIVs to the response
• GIPA is understood as ‘giving jobs to PLHIVs.
