this is a war that requires the mobilization of entire populations." Nelson Mandela
"I used to be afraid of dying, but I'm not anymore...
I'm more afraid of what happens to the people who live!" from "And The Band Played On"
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PEOPLE LIVING WITH HIV & AIDS
However, this leadership has not come easy. At the beginning of the epidemic at the Denver AIDS Conference in 1983 people living with HIV had to storm the stage to be heard. The Denver conference signalled the birth of the PLHIV movement, and first articulated the GIPA principle. People living with HIV and AIDS demanded the right to be involved in every level of decision making affecting their lives, and to determine their own agenda. These rights are as valid now as they were then.
Why is positive leadership important?
Networks of people living with HIV/AIDS have been harnessing the leadership of PLHIV for over twenty years.
Over that time global networks have organised eleven international PLHIV conferences. Women living with HIV have made the needs and challenges visible of children, mothers and grandmothers living with and affected by HIV.
Networks of PLHIV have been leaders in setting up The Global Fund against AIDS, TB and Malaria and have ensured the involvement of PLHIV is anchored in The Global fund mechanisms on global as well as national level.
PLHIV and their supporters have lead advocacy efforts with governments all over the world for faster and increased access to essential treatment. And in many places succeeded.
Nevertheless, PLHIV still struggle to remain in control over their own lives. International political leaders have been – at best – inconsistent in recognising the importance of leadership and involvement of PLHIV. On a global scale public health initiatives rarely are designed together with people living with HIV or with the interest of PLHIV in mind. Instead recent policies around testing, prevention, breast feeding and access to safe abortions are little more but virus containment strategies, which ultimately will be ineffective without PLHIV involvement.
It is essential that global leaders fully recognise the value of involving PLHIV. Without the leadership of PLHIV, universal access to prevention, treatment and care will remain a dream. Without the leadership of people living with HIV stigma and discrimination of PLHIV will prevail and human rights violations against people living with HIV will continue. And without an open environment for all people living with HIV the uptake of testing and prevention measures will lag behind, and the HIV epidemic will not be halted.
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South Bank HIVe CommUNITY-Based Network
The Denver Principles Empowerment Index:
"I’ve been asked to talk about the Denver Principles and their relevance today. The first question is, Why do we revisit the Denver Principles? It’s very simple, they’re the foundation of the People with HIV Self-Empowerment Movement. They show us how earlier activism influences our struggle today and what we can learn from that experience. The Denver Principles are also the foundation of building a grass roots movement, one led by people with HIV, into a powerful voice."
Renewing the Denver Principles:
“We condemn attempts to label us as ‘victims,’ a term that implies defeat, and we are only occasionally ‘patients’ a term that implies passivity, helplessness and dependence upon the care of others. We are people with HIV-AIDS.”
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From the AIDS Treatment Data Network:"On Coming Home"
"Home is not a place; it is an attitude. It is an attitude which depends on how much we are able to feel at home with ourselves as well as with others. Home is something which happens to a person; homecoming has less to do with geography than it has to do with a sense of personal integrity or inner wholeness.
The most important of all endeavors in life is to come home. The most terrifying of fears is loneliness. It means that one has become a stranger to himself, and consequently, to others. To be lonely is to feel fear, to be forever unsettled, never at rest, in need of more reassurance than life can give.
Someone truly loves us when he brings us home; when he makes us comfortable with ourselves, when he takes from us the strangeness we feel at being who we are. We are loved when we no longer are frightened with ourselves."
"Dawn Without Darkness" - Anthony Padavano
You don't have AIDS as soon as you're infected with HIV. The disease process takes a while, around 10 years on average. The process goes from being HIV+ without any symptoms or signs of disease to being HIV+ with symptoms to having AIDS. AIDS stands for Acquired Immune Deficiency Syndrome. Immune deficiency means that your immune system has been damaged by HIV. A damaged immune system can't protect you from infections as well as a healthy immune system.
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