Remembering Stephen Lewis means interrogating the world that made him necessary

What is the opposite of a eulogy?

I have been sitting with that question since Stephen Lewis died on 31 March 2026. Others have written his eulogy, and written it well. What I keep turning over is something harder to name: what this moment asks of those of us who were inside the struggle he is being remembered for. What it means to honour both a movement and a man who was part of it, not its author or its saviour, but someone who chose, when it mattered, to align himself with it.

The language of survival

In 2001, I signed my name to a document that said the South African government was letting children die.

Not in those words. The language of constitutional litigation is careful, almost surgical. The founding affidavit I signed as Deputy Chairperson of the Treatment Action Campaign, the document the Constitutional Court would later cite at the centre of its judgment, asked whether the state could refuse to provide nevirapine to HIV-positive pregnant women, and whether it was constitutionally obliged to prevent the mother-to-child transmission of HIV.

But beneath that language, the truth was stark. Seventy thousand children a year were being infected through mother-to-child transmission. A drug existed that could prevent this. It had been offered for free. And the government was saying no.

That refusal was not a failure of knowledge. It was a political decision.

This matters because the HIV struggle was never only about a virus – it was about power. It was an early, devastating lesson in how power decides who lives and who does not, and what it takes to force that power to account.

The architecture of movement

We were not silent. We were not the first.

Long before the TAC took its case to the Constitutional Court, community activists across the continent – women like Milly Katana in Uganda, and countless others whose names do not appear in the official record – were building community-led models of care, confronting stigma and holding their governments accountable from the inside. They were showing what solidarity looked like before the word became a slogan. I carry that inheritance. The TAC pushed the advocacy envelope, but the movement was always far larger than the TAC, and I am grateful for everything I learned from the parts of it that operated beyond our particular front.

By the time Stephen Lewis arrived as UN Special Envoy for HIV/Aids in Africa, the movement was already organised, analytically sharp and morally clear. Communities were mobilising. Activists were litigating. Grandmothers were holding together families, and the state had already begun to fail. We understood the global trade regime well enough to challenge it. We knew the science. We knew the law. We knew the stakes.

Read more

Farewell, Stephen Lewis, the man who shamed the world into seeing Africa's Aids catastrophe

April 1, 2026

What Lewis did was to refuse the etiquette of indifference. He spoke in rooms where power prefers euphemism, and he named what was happening. He carried our demands into global spaces that had the luxury of looking away, and made that luxury harder to sustain.

He did not give us a voice. He made it harder to ignore what was already known and already being said – in courts, clinics and communities.

Amplification, not direction

The tributes to Lewis speak of someone who walked alongside the movement rather than ahead of it. That is true, and it matters. But I want to complicate it, not to diminish what he did, but because the distinction is important for what we need to understand now. Walking alongside a movement is only possible when the movement is already moving. Lewis did not find a people waiting to be led. He found a people already in motion – already in court, already in the streets, already building the intellectual and organisational architecture of resistance. I know this because I was there.

What he offered was not direction but amplification. And that distinction matters enormously now, when we are again asking what outside solidarity can and cannot do for struggles that must, ultimately, be owned from within.

That, I think, is the opposite of a eulogy. Not silence. Not tribute. The act of telling the truth about a moment – what it revealed, what it demanded and whether we were equal to what we knew.

The DNA of activism

Pandemics don’t only produce tragedy. They expose political choices.

In moments of crisis, some reach for escape routes, for language that softens responsibility, delays action, or relocates blame. Others are forced into clarity because their lives depend on it. Those most affected had no distance from the problem. Their bodies were the evidence.

And so they organised.

LGBTIAQ+ activists who refused erasure. Black women who turned survival into systems of care and resistance. Grandmothers who buried one generation and refused to lose another.

At the International Aids Conference in Durban, Justice Edwin Cameron stood before thousands and said: “I am here because I can afford to pay for life itself.”

It was not a confession. It was an indictment.

We took that indictment to court. And we won.

But victory did not resolve the underlying question. It exposed it.

And yet, and this must be said clearly, because it is true and because the pessimists are wrong – the movement did not only win a court case. It became a conduit. The tools it carried – legal strategies from earlier struggles, community-led models of care rooted in decades of African women’s organising, the insistence that affected people must be at the centre of the response – were sharpened under extreme pressure and transmitted further than before.

They shaped how the world responded to Covid-19. They informed feminist health movements that put gender at the centre of pandemic response. New organisations, new legal strategies, new coalitions have grown directly from this transmission – taking governments to court over secret vaccine contracts, challenging patent monopolies, demanding transparency in procurement.

The methodology pioneered by community activists across the continent, who once operated at the margins of official attention, is now recognised as the architecture of effective public health. TB, cancer, rare diseases – the organising DNA the HIV movement helped transmit runs through all of it. It connected activists across the continent and beyond, forging solidarities that crossed borders because the movement understood, early and instinctively, that diseases do not respect them.

What was true of HIV was true of TB, of Covid-19, of every pathogen that travels with human movement and human poverty. That cross-border knowledge – that shared understanding that your fight and mine are the same – is part of what is now being deliberately unravelled. This is not a small thing. It is the most important thing: that a movement built in crisis carried forward knowledge and capacity that outlasted the crisis, and kept building.

People organised to force access to treatment. But the deeper issue – how to build systems that do not require struggle to secure what should be guaranteed – remained.

We knew this.

We said it, repeatedly.

We argued for resilient public health systems. For at least 15% of national budgets to be directed toward health. For continent-wide collaboration in research and development. For publicly owned pharmaceutical manufacturing capacity. Countries like Cuba, Brazil, Thailand and India had already shown what was possible when states chose sovereignty over dependency.

Many governments chose not to act.

That choice is visible now.

Across the continent, countries are again negotiating access to life-saving resources from positions of weakness, trading minerals, data and political concessions in exchange for health support. These are not inevitable trade-offs. They are the consequences of decisions not taken.

The persistence of inequality

SA’s story is not simple. Following sustained public pressure, the state made a significant intervention in its HIV response: millions of people are alive because of that, and it must be acknowledged fully.

SA now has the largest antiretroviral programme in the world. But that scale cannot be separated from the fact that the country’s early failure to respond helped produce one of the largest HIV burdens on earth. The programme and the crisis were made together.

That intervention landed inside one of the most unequal health systems, in one of the most unequal societies in the world. At 11.3% of the national budget, health spending exists. But spending without equity, without accountability and without systemic transformation is not the same as a right realised. A programme is not a system. Funding is not transformation. The inequality that Cameron named from that Durban stage was not resolved by the ARV rollout. It was deferred.

The health system strains. Accountability falters. National Health Insurance, intended to resolve the inequality that defined the epidemic, remains contested and incomplete. And when systems fail, we reach again for the easiest explanation: the outsider, the migrant, the visible other, rather than confronting the architecture of failure itself.

Weaponisation of funding

Globally, the pattern is repeating.

Funding commitments are not merely withdrawn – they are weaponised. In early 2025, Pepfar-funded HIV organisations across SA received letters overnight informing them that their grants had been permanently ended, their work deemed no longer aligned with agency priorities. Some were signed: “Thank you for partnering with USAid and God bless America.”

The consequences were immediate and predictable: clinics that had operated for years closed within days, researchers were laid off, and vaccine trials were suspended mid-process. The consequences of this retreat are not abstract. Early 2025 reporting, drawing on modelling by researchers at the Desmond Tutu HIV Centre, warned that SA could face up to 500,000 additional HIV-related deaths over the next decade. These are not distant projections but foreseeable outcomes of political decisions already taken – lives that will be lost not because solutions do not exist, but because systems remain fragile, dependent and too easily withdrawn.

At the same time, science does not pause. Lenacapavir, a twice-yearly injection that has demonstrated near-complete effectiveness at preventing HIV, was proven partly through trials conducted on South African bodies. SA researchers contributed the evidence. SA companies were then excluded from Gilead’s initial voluntary licensing agreements, which granted manufacturing rights to companies in India, Egypt and Pakistan. A civil society leader said it plainly: “You can’t come into the house to ask us to allow you to learn, and then run away and no longer include us.” SA is now negotiating for local production rights, a necessary battle that should not have been necessary at all.

This is the structure of the moment: breakthroughs exist, the knowledge is there, and access is again being rationed by the same logics of exclusion the movement fought to dismantle. Technical solutions cannot compensate for political retreat. And the political retreat is not incidental – it is deliberate.

What is also clear is that we can no longer claim we did not understand the consequences.

Disposability is not accidental. It is organised and sustained.

It is often said that movements are harder to build now.

Intolerable conditions

Perhaps. But the HIV movement was not built because conditions were favourable. It was built because they were intolerable. It was built by people who refused to accept that their lives were negotiable.

What figures like Stephen Lewis did was not to lead that movement, but to align with it, to use access to power to amplify rather than contain it.

We do not need to recreate that moment.

We need to exceed it. Not in the sense of nostalgia scaled upward, but in the sense of building what we always said we needed: states that treat health as a constitutional obligation rather than a donor-dependent programme. Continental pharmaceutical capacity that cannot be switched off by a licensing decision made in California. Health budgets that reflect what governments actually owe their people. An NHI that means something. Accountability for what is audited and found wanting, year after year, with consequences that amount to more than a report.

Because what is required now is not only mobilisation, but transformation at a scale we have long named and repeatedly deferred: systems that do not outsource survival, that do not collapse without external funding, and that cannot be withdrawn at will.

There is still work being done. There are still people organising, negotiating, holding the line where they can. But without a deeper shift in how power is structured, locally and globally, those efforts will remain fragile.

This is not a call to return. It is an answer to the question I began with.

The HIV struggle is not over. Nor is it a story confined to the past. It is an ongoing test of whether we are willing to act on what we already know – and have long known.

The question is no longer whether we can name the problem.

It is whether we are prepared to build differently because of it.

Because if we are not, then what we are writing, slowly, through policy, neglect and repetition, is not history.

It is a eulogy. DM