NOT PITY, PARTNERSHIP: THE RISE OF COMMUNITY LEADERSHIP

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ITPC Annual Review 2022

DEAR FRIENDS IN THE FIGHT,

As we mark the momentous occasion of our 20th anniversary, my heart swells with pride and gratitude for our remarkable journey. Not Pity, Partnership: The Rise of Community Leadership marks the path from which we came and encapsulates the spirit of our shared mission to achieve health and social justice through robust community engagement. This theme reflects the mission of our global activist network to make space for communities as equal partners in the fight for quality health for all. Today, Community Leadership is a foundational part of the strategies of PEPFAR, the Global Fund, and UNAIDS. But it did not start this way.

Every single ounce of visibility, resourcing, and credibility that communities have today was hard-fought and earned.

Two decades ago, we dared to dream of a world where quality health is not a luxury and where communities affected by HIV and AIDS would live long, healthy, and fulfilling lives. In 2001 — just two years before the International Treatment Preparedness Summit that would launch our organization — the US government’s Bush administration opposed any extensive use of the life-extending anti-AIDS drugs in Africa. It insisted that the healthcare infrastructure was too primitive and that Africans were incapable of following the regimen as they “don’t know what Western time is … never seen a clock or a watch their entire lives.” Inexcusably, the head of the U.S. Agency for International Development (USAID) said the money raised by a new global fund to fight AIDS should be used almost entirely for prevention services, not for the antiretroviral (ARV) drugs that had been so successful in extending the lives of people living with HIV. He went on to explain that attempting to get treatment drugs to Africans any time soon would not be worth the effort.

It was in this context that ITPC was birthed — in inequity, injustice, morbidity, death, and blow after blow to our collective drive as we watched our friends die. But, together, we defied the odds, increased resource allocations, and changed how governments valued communities. By refusing to accept the status quo and steadfastly pushing for quality medicines for all, everywhere, we changed the course of history and reshaped the discourse around access to treatment and health altogether.

In 2003, even though the AIDS response was moving into a new phase, globally, with growing political commitment (WHO’s 3×5 initiative to bring antiretroviral treatment to 3 million people by 2005 would be launched that December) and increasing funding that led to treatment programs shifting into gear and prevention efforts being expanded, ARVs cost more than USD 1,000 per person per year. Less than 500,000 people had access to ARVs, and HIV prevalence in Botswana was a staggering 40% — there was no pre-exposure prophylaxis (PrEP), no long-acting injectables, no routine viral load testing, and no strategic initiatives for community-led monitoring.

This was the backdrop for the start of our global activism. What caused a ragtag group of people across the globe to come together and stay the course, over 20 years? What is in ITPC’s DNA that sustains us and pushes us to face the challenges of the future?

This Annual Report explores the answers to these questions. Unlike other reports, our 20 Year Anniversary Special Edition not only reflects where have come from, but who we are; it showcases our 2022 work and shares our vision for the work ahead.

The year 2022 marks the second year of work under our current Strategic Plan. This report highlights how we have continued to share knowledge and critical resources with grassroots activists, held decisionmakers accountable, and increased the availability and affordability of diagnostics and medicines. In every corner of the world, our community-led efforts have unleashed the potential of ordinary people to bring about extraordinary change. From generating CLM data for the removal of user fees in Cote d’Ivoire to successful patent oppositions in Argentina saving literally millions of dollars and lives, our work has proven time and again that when communities are at the heart of the response, the impact is undeniable.

As we think about the future, although we see a dark world filled with colliding crises and yawning equity gaps, we reaffirm our pledge to challenge injustice, dismantle barriers, and amplify the voices of those on the frontlines of the consequences of policies. We commit to evidence-informed advocacy, the elevation of community data, and a grounding in human rights.

For ITPC, people will always be first — before investment cases, before government protocols, before cost-benefit analyses, and before profit. Together, we will continue to push the boundaries of what is possible and foster a world where health equity is the norm, not the exception. I stand in awe of the relentless passion and commitment of the community leaders, activists, advocates, and allies who have refused to be silenced by adversity – and the camaraderie, humor, and heart that has sustained us through it all. I extend my heartfelt gratitude to each one of you. Our secret formula is no secret: ordinary individuals accomplishing extraordinary feats united under the banner of shared purpose and collective action.

Community leadership is not a footnote; it’s the anthem of progress.

WITH UNWAVERING DETERMINATION,

Solange