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Since the beginning of the HIV and AIDS epidemic, people living with HIV and AIDS have been at the forefront of the response. This is especially pertinent for us, as Bruce Burnett – one of our co-founders and our organisation’s namesake – was living with HIV and was one of the first pioneers of the AIDS response in Aotearoa.
HIV remains at the centre of our organisation and our trust deed reflects this, with our primary objectives being to:
Our founding document also reflects the commitment to adopt the Greater and Meaningful involvement of People Living with HIV/AIDS (MIPA) principle established by UNAIDS (The Joint United Nations Programme on HIV/AIDS). This principle guides our organisation, policies, and programmes.
The Greater and Meaningful Involvement of People living with HIV is a principle that aims to realize the rights and responsibilities of people living with HIV, including their right to self-determination and participation in decision- making processes that affect their lives. In these efforts, MIPA also aims to enhance the quality and effectiveness of the AIDS response.
“MIPA is about ensuring that the communities affected by HIV are involved in decision making at every level of the HIV response. Having champions living with HIV within HIV organisations will encourage their sense of responsibility in the HIV response, build trust, and narrow the gap between communities affected by HIV and the work of Burnett Foundation Aotearoa.”
“As a person living with HIV, I believe the meaningful involvement of people living with HIV is essential within any organisation leading the response across Aotearoa. The Burnett Foundation Aotearoa MIPA plan is a commitment that strengthens and empowers us. I seek to ensure that the contribution I offer in the work at Burnett Foundation Aotearoa is built upon the incredible mahi of others who have gone before me and supports the work of others to come.”
At Burnett Foundation Aotearoa, the lived experience of people living with HIV plays an important role in the design, implementation, monitoring and review of HIV prevention, treatment, and support programmes as well as policymaking. The meaningful involvement of people living with HIV improves the relevance, acceptability, and effectiveness of programmes.
MIPA calls for the active, full, and meaningful involvement of people living with HIV and affected communities in the work of organisations, as well as advocating for space to be made for people living with HIV in the response. It also calls for the fostering of meaningful involvement of affected communities, reaching out to people and engaging them.
In this way, MIPA amplifies the motto “nothing about us without us.”
Through centring people living with HIV in our work and programmes, and giving more visibility to this mahi, we also break down fear and prejudice within our communities and contribute to the fight against HIV stigma and discrimination.
“The MIPA Action Plan represents the commitment of the Burnett Foundation Aotearoa to support and effectively involve people living with HIV. This plan recognises and encourages the role we have, as people living with HIV, to contribute to the shaping of HIV policies and programmes within the organisation we are part of.”
While this organisation has always endeavoured to the enact MIPA principles, the formal journey of Burnett Foundation Aotearoa incorporating the MIPA principles in all areas of our organisation started at the 2019 Staff Hui, where staff living with HIV bravely shared stories of their diagnoses and outlined how personal experience living with HIV guides their work.
Within the two years after that Hui, a group of staff living and affected with HIV, alongside allies from across the organisation, formally assessed and evaluated the Foundation’s work with people living with HIV. There were good examples of how people living with HIV were at the centre of our response to HIV stigma and discrimination. At the same time, it was identified the need to attract and support staff living with HIV. There was also a need to formalise processes and ways of working better to involve people living with HIV in programme and service development.
In 2021, during our yearly Staff Hui, the group of staff living and affected by HIV presented and launched our internal/organisational MIPA action plan. The actions in the plan are currently guiding our MIPA improvement journey. Those actions help informing two main areas within the organisation:
“When I think globally about how many people living with HIV have championed the cause to treat us with compassion and recognise our agency, the MIPA plan is a full-throated tautoko of that kaupapa. The MIPA plan gives us agency and a voice in the foundation’s ongoing response to HIV/AIDS within our community. With Burnett Foundation Aotearoa creating a platform for me to add my voice to the choir, it is both empowering and spiritually nourishing.”
Staff members living with HIV who are comfortable disclosing their HIV status at Burnett Foundation Aotearoa have established an internal MIPA working group. This group is responsible to oversee the implementation of our internal MIPA Action Plan.
The journey of adopting and incorporating the MIPA principle commences within our organisation through its internal MIPA Action plan. However, we recognise this is a work in progress and we will strive to continue working towards an HIV response in Aotearoa that genuinely and meaningfully involves people living with HIV.