The memory of what the world has lost must drive us forward

Stephen Lewis, Co-director of AIDS-Free World, recalls his years as the United Nations Secretary-General’s Special Envoy for HIV/AIDS in Africa from 2001–2006.

The Envoy years were revolving doors of death. I would sit down one evening in Kigali, or Lusaka, or Kampala, with several men and women from the national association of people living with AIDS, and we’d have an intense conversation about their struggle for survival, and I’d think to myself what a lovely and courageous group they were.

Then I’d return six months later for another meeting, and almost everyone was gone. I’ve never really come to terms with that awful rhythm of life and death. It haunts me still. Unlike others, of more optimistic mien, I just can’t get out of my mind the hundreds of thousands — probably millions — who died unnecessarily in the carnage of the pandemic.

‘For me, the progress is bitter, shrouded, as it is, by the memory of what the world has lost.’

I think of South Africa. In the denialist years of Thabo Mbeki and his lunatic Minister of Health, unbelievable numbers of people, tens of thousands, succumbed to AIDS because a supposedly smart President, with one terrible intellectual cavity, wouldn’t provide the drugs to keep them alive.

If it hadn’t been for the Treatment Action Campaign, God knows what might have happened to South Africa. The entire country could well have come to resemble a massive intensive care unit. And here’s the rub: through all those nightmare years, officials of real power and knowledge, in the UN and beyond, said nothing. Oh, they talked to Mbeki in whispered fragments behind the scenes, they begged him to change, always behind the scenes, but they never took him on publicly in the councils of the world.

And so he prevailed. And countless died.

I think of Dr. Julio Montaner, the remarkable head of the British Columbia Centre of Excellence for HIV/AIDS in Vancouver. I sat beside Dr. Montaner at the International AIDS Conference in Toronto in 2006 when he first expounded to the world his theory of Treatment as Prevention. He was greeted with Pavlovian skepticism, even though the theory was grounded in irrefutable scientific evidence, much of it taken from British Columbia itself.

It took another six to eight years before his original thesis was vindicated by additional studies. But the truth is that the additional studies weren’t necessary; they were driven, as so often seems to be the case, by unbridled scientific jealousy and competitiveness.

Just think of how many lives might have been saved if, using Dr. Montaner’s findings, antiretroviral treatment had been more urgently rolled out, and Treatment as Prevention had taken an earlier grip on the international community. Now of course, it’s a mantra.

Better late than never, except for those who died en route.

I think, above all, of women. It’s truly ironic that when, today, the world’s HIV experts talk of “high-risk groups”, they almost always mean men who have sex with men, or sex workers, or transgendered, or injecting drug users, or prison populations, but never women.

And yet it is incontrovertible that women have been and are most deeply ravaged by the pandemic. Gender inequality drives the virus, and we’ve done so little to protect women from being infected in monumentally disproportionate numbers.

In the treatment interventions over the years, women were included, but never given the intense, single-minded priority they should have received. If, as a category, women represent sixty percent of infections, the care cascade, as it’s called, should be hurtling towards the objective of getting every HIV-infected woman in sight into treatment.

But the care cascade has always been a slow, negligent trickle. And the fact that sexual violence and child marriage and female genital mutilation and sex trafficking are all known contributors to high rates of infection amongst women and adolescent girls has induced academic study rather than urgent intervention.

Alas, it was ever thus. And along the way, during the Envoy years, pregnant women were, for the longest time, left out of treatment altogether and their babies were born HIV-positive; then the women were given Nevirapine, even though it was known to be dangerous for future treatment. It’s only in the last couple of years that women have finally received antiretroviral treatment during pregnancy, birth and breastfeeding, and even then the women were an afterthought.

Come the end of 2015, the world will celebrate that so-called PMTCT (Prevention of Mother-To-Child Transmission) has resulted in dramatic reductions in the number of babies born HIV-positive. The mothers may or may not be mentioned. It’s instructive to note that the program is called “2014 Progress Report on the Global Plan Towards the Elimination of new HIV Infections among Children by 2015 and Keeping Their Mothers Alive.”

It is enraging, this contempt for women and the toll it has taken.

Yes, I know that great progress has been made on a number of fronts. But for me, the progress is bitter, shrouded, as it is, by the memory of what the world has lost.

That memory is what must drive us forward.