GI The evolution of leadership by people living with and affected - - PowerPoint PPT Presentation

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

• 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

Why is it important that PLHIV lead the response to HIV?

FIRST argument

GIPA should not be seen merely as a principle.

The 90’s GIPA Hierarchy

SECOND

GIPA is not an “activity”

FINALLY

GIPA is not a program

so What Exactly

is GIPA?

GIPA is the greater investment in

PEOPLE

with HIV/AIDS

People largely from the margins: 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 IN PLHIV 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?

• 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

In countries most affected by HIV:

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

there are MANY MANY GIPA principles, programs, policies, practices and plans

• ut there.

HOW DO WE DECIDE WHICH WAY TO EVOLVE?

SO:

LISTEN TO WHAT THE PEOPLE ARE SAYING

GIPA= Individual +

• rganizational capacity

Greater involvement comes from greater investment in capacity building They are saying:

What’s the Return on Investment?

But is it worth it?

There are no evaluations of the economic or other impacts

• f GIPA

Bottom line: 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

Steps are being taken to assess GIPA value

On a positive note: Examples:

• USAID Baseline Study in Mekong Delta
• Stigma Index
• Monitoring Tools…
• The first sustained efforts to gather data

Despite these tools, policies and programs….

YET: We have not put GIPA within a Human Rights and Equity Framework

• r

held anyone Accountable This could be used as Proxy Indicators for UNGASS review, for MDG goals

GIPA without investment: tokenistic GIPA with investment: meaningful

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

PROFESSIONAL SKILLS BUILDING ORGANIZATIONAL CAPACITY BUILDING

So what to invest in?

PLHIV NETWORKS PLHIV PROFESSIONALS

GIPA

• 1. Professional Development:
• Building skills, knowledge, understanding
• Peer mentoring
• Collaborative learning
• Knowledge sharing

GOAL: EQUIPPING AND ENABLING

• f PLHIV

• 2. Organizational Development:
• Good governance
• Partnership building
• Accountability
• Communication campaigns
• Fund raising and distribution

GOAL: STRONGER NETWORKS

• f PLHIV

GIPA can become real and meaningful

We have to FOCUS

But first,

Is this how GIPA looks at your

• rganization?

FOCUS 1: Organizations that hire PLHIV

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

Invest in COLLABORATIVE partnerships for GIPA

And second,

A collaborative GIPA partnership

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.

We’ve invested in the capacity

• f individuals

and organizations

So let’s say…

With effective leadership at the highest levels And meeting PLHIV needs at the grassroots

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

Such that…

Only then will we have

Evolved GIPA to The next level

Thank you.