Emily Bass has spent more than 20 years writing about and working on HIV/AIDS in the United States and Africa. Her book, To End a Plague: America’s Fight to Defeat AIDS in Africa has been shortlisted for the 2022 Lionel Gelber Prize presented by the Munk School and Foreign Policy Magazine.
“AIDS has a woman’s face,” said Stephen Lewis, former UN Special Envoy for HIV/AIDS in Africa. He shared this phrase often, in rage and anguish, during and since his time in that post. In those days, AIDS was the most globally-recognized pandemic. Mr. Lewis was a fierce activist, but no one I knew was as fierce as the women living with HIV who were my friends and activist co-conspirators. Thanks to them – and many others – AIDS had both a face and a voice, shouting loudly that preventable deaths from a treatable disease were unacceptable.
This activism was all that prevented AIDS from becoming an acceptable, continuing plague – endemic to places and people that had little value to the state. A pandemic is an ongoing crisis; an endemic is an ongoing fact of life.
Right now, the wealthy countries of the world seem utterly intent on ensuring that COVID-19 ceases to be thought of as a pandemic and becomes, instead, an endemic – something that endures, without expectation of an end.
There are many reasons why this is unacceptable and unconscionable. Of all of them, the one that is closest to my heart is this: The endemic also has a woman’s face. If the grotesque combination of corporate greed, government inaction and global underfunding that perpetuates all plagues continues unchecked, endemicity is certain, and its burdens will be borne by people who are poor, Black, brown, LGBTQ and, often, women.
Technically speaking, the difference between pandemic and endemic infection is that the former is global; the latter is native to a specific place. Politically speaking, a pandemic is undeniably a crisis; an endemic is a crisis only to those who are native to that place where injustice or illness co-exist in perpetuity.
What actually makes the difference between pandemic and endemic reality is activists who assert that health is a human right. The HIV/AIDS pandemic had a woman’s face because women, among many other activists, insisted that it did. Without their faces and voices, HIV/AIDS would have become an endemic decades ago.
Now, just two years into COVID-19, the signs of accepting endemicity are everywhere. Earlier this week the U.S. senators declined to allocate any funding at all for global COVID-19, even though the U.S. Agency for International Development’s effort to support vaccine service delivery is about to run out of money.
There are activists fighting every day for a more just COVID-19 response. But lawmakers and others in power have taken advantage of the pathogen’s pervasiveness. This plague has not been assigned a face or a voice by the United Nations, the U.S. government or the World Health Organization. Instead, we are told that a pandemic anywhere is a pandemic everywhere. It is a universalization that erases reality: Endemic is the word for a pandemic in places that people in power can ignore.
And what of the women who insisted that AIDS could not be ignored? For me, there are four dear friends whose faces and voices I can conjure readily: Ugandan activist and health professional Milly Katana has a gap-toothed grin, South African fighter and fashion designer Yvette Raphael is the maestro of the theatrical pout. It has been far too long since I’ve basked in my Ugandan Cissy’s benevolent smile, or been witness to Ugandan Lillian Mworeko’s half-lidded mischief.
As I described in my first book – which is also dedicated to them – they changed the course of global health history with their insistence that AIDS medications could and must be delivered to Africa. But when I called each of them recently, they were as clear-eyed as always – but this time what they saw wasn’t a better future, but an endemic reality marked by isolation, gender-based violence and exhaustion.
Ms. Mworeko, executive director and founding member of the International Community of Women living with HIV Eastern Africa, wondered whether activists could keep on securing bold victories against public-health authorities when every meeting happens in a virtual space. “If I am in a [virtual] meeting, what is it that I need to do to make sure you feel what I am saying?” Frustrated to the point of tears with patchy internet, she wondered if female activists – at home cooking meals, fielding calls from children in boarding schools, caring for loved ones – had the skills to regroup in the digital arena.
“We know life is never going to be the same,” said Yvette Raphael, co-founder and co-director of Advocacy for Prevention of HIV and AIDS in South Africa, and the founder and creative force behind the fashion label Pozie by Latobyve. “It’s only going to get worse. Resisting it is only going to make it worse.” She meant that it was time to accept the endemic reality – where bread prices climbed and domestic violence surged. She was going to roll with the punches, she told me, and keep on fighting so that the young women who looked up to her, who texted her after they’d been raped, beaten, diagnosed with HIV, would see that she was still fighting.
Cissy talked to me about loneliness – of life without her mother, who’d died after having COVID-19, of life without hugging, greeting, getting a lift from a friend for fear they might be infected. She said it was like reaching “somewhere where you cannot even breathe, even talk. You’ve reached a dead end, you live in suspension, you fear people. You lose that touch of humanity.”
“COVID-19 has exposed the worst weaknesses in our society,” Milly Katana told me. A health professional and entrepreneur, Katana has recently started a new activist group, Women at 40, focused on rekindling activism by and for women living with HIV. Like all my other friends, she was worried about the rising costs of everyday items: soap, fuel, food, and of the enormous, nearly unbearable pressure of providing those things not just for themselves and their immediate families, but for the network of extended family and community each supports. “If I don’t earn in Kampala, I have nothing to send them. It’s an ecosystem,” Ms. Katana said.
The difference between a pandemic and an endemic may well be the energy that can be mustered to fight back. If there is anything more terrifying than the lethal lack of urgency on the part of governments in the global North, it is the insidious effects of COVID-19 related isolation, exhaustion and worry on a generation of feminist activist warriors who have already survived one plague. What I see in my friends, I also – if I am honest – see in myself. This week, when my own government could not find a single dollar for global COVID, I did not feel enraged, as I normally would. I was woolly-headed, exhausted and even, if only for an instant, resigned.
Endemicity causes and is caused by resignation. Ferocious refusal and resistance can turn the acceptable into the untenable, can make the endemic a pandemic, can insist that the crisis is not over. But such ferocity needs faces. It needs voices. Some of those most affected by COVID, those living with long COVID, often do not have the energy or ability to rise up and take to the street. The women who were and are the face of AIDS are fatigued, angry, worried. Must this be their struggle, too? Or could the face that speaks truth to the powerful forces edging COVID-19 ever closer to endemicity belong to someone else? Could it be yours?
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