PLHIV/AIDS – the Reality of the Epidemic; our Response Recognizing the importance of USAID partnering with PLHIV/AIDS in its response to the HIV/AIDS epidemic. Michael Angaga / Dorothy Odhiambo, NAP+ June 2002

"Of equal importance to their role in improving human rights, people with HIV must play an integral role in HIV prevention and care programs in order for them to be truly effective." -UNAIDS “From Principle to Practice: Greater Involvement of People Living with or Affected by HIV/AIDS (GIPA)”. September, 1999.

“At the 1994 Paris AIDS Summit, 42 National governments declared that the principle of greater involvement of people living with or affected by HIV/AIDS (GIPA) is critical to ethical and effective national responses to the epidemic.” -UNAIDS “From Principle to Practice: Greater Involvement of People Living with or Affected by HIV/AIDS (GIPA)”. September, 1999.

Countries which were represented at the Paris Summit and signed the declaration: Argentina, Australia, Bahamas, Belgium, Brazil, Burundi, Cambodia, Cameroon, Canada, China, Denmark, Djibouti, Finland, France, Germany, India, Indonesia, Italy, Cote D’Ivoire, Japan, Mexico, Morocco, Mozambique, Netherlands, Norway, Philippines, Portugal, Romania, Russian Federation, Senegal, Spain, Sweden, Switzerland, Tanzania, Thailand, Tunisia, Uganda, United Kingdom, United States, Viet Nam, Zambia UNAIDS “From Principle to Practice: Greater Involvement of People Living with or Affected by HIV/AIDS (GIPA)”. September, 1999.

Defining GIPA At its most basic, GIPA means two important things: Recognizing the important contribution people infected or affected by HIV/AIDS can make in the response to the epidemic. Creating space within society for their involvement and active participation in all aspects of that response. This contribution can be made at all levels, from the individual to the organizational, and in all sectors from the social and cultural to the economic and political.

Speakers Decision Makers Target Audiences Contributors Experts Implementers

Providing a Human Face “ There is no substitute for direct experience, which can be considered a kind of expertise if accompanied by the ability to communicate well. At its most basic, therefore, greater involvement by PLHIV/AIDS means creating a space for individuals to Use their experience of living with or being affected by HIV/AIDS in the greater response to the epidemic Give a human face and voice to the epidemic in the minds of people not directly touched by it.” Involve PLHIV/AIDS in a variety of roles at many different levels.” UNAIDS “From Principle to Practice: Greater Involvement of People Living with or Affected by HIV/AIDS (GIPA)”. September, 1999.

Why partner with PLHIV/AIDS? We have proven to be powerful catalysts in past – in creating awareness and mobilizing communities We provide important insights into how to develop and implement programs Our motivation is very high, both to learn and participate We have been providing each other with care and support – learn from us/help us build on what we know Including us provides us with increased self worth  improving attitude/decreased stigma  more productive lives

The Network of African People with AIDS (NAP+) Continent-wide coalition of PLHIV/AIDS organizations; representatives in EVERY African Country Ensuring that Africans infected and affected are involved in decision- making and implementation of HIV/AIDS programs

NAP+ and USAID USAID support to the NAP+ Secretariat (since 2001) in Nairobi provides the following: Coordination of Regional-wide PLHIV/AIDS leadership Communication among PLHIV/AIDS across Africa Ambassadors of Hope Program Dissemination of key materials/lessons learned/funding opportunities Development of care, nutrition, and treatment literacy programs Region-wide Advocacy to reduce the stigma of living with HIV/AIDS

Challenges for PLHIV/AIDS in Africa Difficulty of acknowledging HIV status publicly Lack of donor organizations prepared to partner with/contract with/work with PLHIV/AIDS Lack of professional skills and preparation for PLHIV/AIDS Lack of supportive conditions for HIV-Positive people within organizations Questions of sustainability Token involvement. Inviting PLHIV/AIDS to a meeting is assumed to have been enough

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. UNAIDS “From Principle to Practice: Greater Involvement of People Living with or Affected by HIV/AIDS (GIPA)”. September, 1999.

What can USAID and its partners do in-country? Develop capacity of PLHIV/AIDS organizations – in org. management, policy advocacy, technical areas, care and support Partner with PLHIV/AIDS organizations Build regular engagement with PLHIV/AIDS organizations in-country Urge USAID Partners and Field Support to contract with PLHIV/AIDS organizations Require RFAs to demonstrate PLHIV/AIDS partnership/involvement

How to support GIPA in your daily work Push for program mechanisms that promote the greater involvement of people living with HIV/AIDS. Model behavior – by developing meaningful/professional/respectful partnerships with PLHIV/AIDS – to offer guidance to national leaders Build on the knowledge of PLHIV/AIDS in developing USAID programs – in care, support, MTCT, OVC (our children !) Assure that USAID mission, partners and work environment reflect and respect GIPA

USAID support to PLHIV/AIDS Assisting with micro-grants and finance Support our community-based initiatives Providing training to further the activities of PLHIV/AIDS and the organizations supporting us. Communicating between groups- sharing successes and failures

So, here I am an ordinary person with what is rapidly becoming a most ordinary virus. I have stopped feeling sorry for myself and I have now learned to live, think and even act positively. I have come out of my hideout, and I have found a stage where I can tell the world over that I am not a victim but rather I am a messenger. A messenger of hope…Tell me I am not a number, a statistic but an equal partner in this struggle. -Asunta Wagura, Kenya Network of Women with AIDS (KENWA) “My Story: Coping with HIV/AIDS”