GI The evolution of leadership by people living with and affected by HIV/AIDS PA
A presentation by Ron MacInnis
Agenda: 1. Why is leadership of PLHIV important to the global response to HIV? 2. A fresh definition of GIPA 3. A way to evolve GIPA
Why is it important that PLHIV lead the response to HIV? • Perspective of lived experience • Motivation of affected • Consumer point of view • Solutions from the epi-centre of the body politic • Key to evaluation of effectiveness, coverage and quality • Care as prevention
FIRST argument GIPA should not be seen merely as a principle.
The 90’s GIPA Hierarchy
SECOND GIPA is not an “activity”
GIPA is not a program FINALLY
is GIPA? so What Exactly
GIPA is the greater investment in PEOPLE People largely from the margins: with HIV/AIDS poor, female, minorities, sex workers, drug users: The disempowered and voiceless majority
It’s greater investment because... there cannot be greater involvement without greater investment
Its people because we need to invest in people with HIV/AIDS to drive policies to establish social practices and to demonstrate commitment to improving the lives of PLHIV
in other words...
IT’S INVESTMENT PLHIV IN for
Where is GIPA after 20 years? • Diffused - GIPA +, MIPA, RIPA... • Fragmented • Contingent • Difficult to Implement ⇒ tokenistic ⇒ mid-life crisis
Where has GIPA worked? • In developed countries: N. America, W. Europe, Australia It worked because… • The epidemic affected those who already had a high capacity e.g. gay community • Well developed civil society and legal frameworks • Willingness and ability of governments to invest
Where is GIPA struggling? In countries most affected by HIV: • Lack of supporting environment to ‘come out’ • Lack of genuine government commitment • Struggle with engaging with what are in many cases illegal/immoral practices • Stigma and discrimination make it too hard – HIV+ community leaders remain invisible
Where is GIPA struggling? • In PLHIV networks: • Volunteering is not an option – ‘unfair’ pay, grinding poverty, poor health • Inability to monitor or hold governments accountable • Lack of legitimacy hinders national representation • Over-burdened but under-resourced
Where is GIPA struggling? • In mindset: • Unless positive people themselves choose to get involved, GIPA will not work • The right environment must be created to encourage greater involvement • Governments and HIV/AIDS organizations need to believe that they need the real and genuine involvement of HIV+ people for an effective response • Lack of strategic thinking • Reactive rather than proactive
Where is GIPA struggling? • On the concept of “involvement” • single isolated voices without constituency • lack of experience in analysis and synthesis • lack of experience in collective decision making • at the table as tokens • Need for capacities in communication • not tied into communication channels and linkages • simple afterthought • cult mentality of the individual
Theory: GIPA and HUMAN RIGHTS are the PRISM through which the response is implemented and evaluated Practice: They are largely an afterthought, wheeled out when necessary
SO: there are MANY MANY GIPA principles, programs, policies, practices and plans out there. HOW DO WE DECIDE WHICH WAY TO EVOLVE?
LISTEN TO WHAT THE PEOPLE ARE SAYING
They are saying: GIPA= Individual + organizational capacity Greater involvement comes from greater investment in capacity building
What’s the Return on Investment? But is it worth it?
Bottom line: There are no evaluations of the economic or other impacts of GIPA Why not? • It’s difficult to measure a loose principle • Other than in developed countries, there isn’t much to show in the rest of the world
On a positive note: Steps are being taken to assess GIPA value Examples: •USAID Baseline Study in Mekong Delta •Stigma Index •Monitoring Tools… � The first sustained efforts to gather data
YET: Despite these tools, policies and programs…. We have not put GIPA within a Human Rights and Equity Framework or held anyone Accountable � This could be used as Proxy Indicators for UNGASS review, for MDG goals
GIPA with investment: meaningful GIPA without investment: tokenistic Without investment in people, GIPA is Half-empty A Concept/principle on paper
PROBLEM: INVOLVEMENT is separated from the PEOPLE by a wide gap
SOLUTION INVESTMENT IN PLHIV From REPRESENTATION To LEADERSHIP
So what to invest in? PLHIV PROFESSIONALS PROFESSIONAL SKILLS BUILDING GIPA ORGANIZATIONAL CAPACITY BUILDING PLHIV NETWORKS
1. Professional Development: •Building skills, knowledge, understanding • Peer mentoring • Collaborative learning • Knowledge sharing GOAL: EQUIPPING AND ENABLING of PLHIV
2. Organizational Development: • Good governance • Partnership building • Accountability • Communication campaigns • Fund raising and distribution GOAL: STRONGER NETWORKS of PLHIV
GIPA can become real and meaningful
We have to FOCUS But first,
FOCUS 1: Organizations that hire PLHIV Is this how GIPA looks at your organization?
THE FOCUS TEST: 1. Do you employ PLHIV? Do they have ‘real’ jobs and a career path? Are they allowed to focus on PLHIV leadership? 2. Are there PLHIV on your board? Do PLHIV occupy senior management positions? 3. Are PLHIV paid the same rate for the job as others? Do you encourage PLHIV to apply for jobs? 4. Do you provide support, workplace mentoring, capacity building? 5. Do you encourage PLHIV staff persons to give their views and listen to them?
FOCUS 2: Invest in PLHIV Networks CAPACITY BUILDING & ADVOCACY leaders
And second, Invest in COLLABORATIVE partnerships for GIPA
GIPA partnership A collaborative EXAMPLE:
1 + 1 = 11 11Organizations in LIVING2008 The sum is greater than its parts
WHY?
Because each organization has a senior staff Living with HIV
Evolving GIPA is a process, not a one-off
Evolving upstream and downstream
If GIPA is about investing, PLHIV will trust it They trust it, they own it.
So let’s say… We’ve invested in the capacity of individuals and organizations With effective leadership at the highest levels And meeting PLHIV needs at the grassroots
Such that… Our understanding of GIPA has shifted from a limited ‘greater involvement’ to an expansive vision aimed at investing in people living with HIV, investing in the capacity building/advocacy role of PLHIV groups/networks, investing in PLHIV leadership, and investing in measurable accountability mechanisms
Only then will we have Evolved GIPA to The next level
Thank you.
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