HIV medication from the ARV drug treatment is given out at a clinic in Arua, Uganda. Photo / Getty Images
In 2001, UN estimates suggested 150 million people would be infected with HIV by 2021. That preceded an ambitious global campaign to curb the virus. How well did it work?
The story of the past two decades of the fight against HIV can be told through the life of JulietAwuor Otieno. She was 18 years old and living in Nairobi, Kenya, in 2001, when she learned she was pregnant. On a visit to the doctor, she was tested for HIV.
"I was given the results in a paper that looks like a receipt that was stamped 'POSITIVE,' " she recalled. "I cried for 30 minutes. People didn't want to be associated with HIV I also did not want to be associated with HIV."
That year, United Nations projections indicated that as many as 150 million people worldwide would have been infected with HIV by 2021. But that disastrous fate did not come to pass. The Joint United Nations Programme on HIV/AIDS, known as U.N.AIDS, estimates that around 79 million people have been infected with HIV since the epidemic began — still a calamitous number, but just over half of the feared total.
In Kenya in 2001, as in many parts of the world, an HIV diagnosis came with the horror of imminent death. Antiretroviral therapy, or ART — a daily regimen that prevents the virus from multiplying in the body — had proven its general effectiveness but was costly. In 2000, according to Doctors Without Borders, a year's worth of treatment would cost a single patient US$10,000-US$15,000 ($14,800 to $22,200).
Otieno, a reproductive health advocate, was put on an antibiotic, Septrin, to avoid the opportunistic infections that can accompany HIV. "I was not even told about ART — I did not know about ART," she said. She was ashamed of being HIV-positive and fearful that her family would learn of her status, so she tossed most of the Septrin in the trash. Her baby boy, born in 2002, most likely contracted HIV from her and died from pneumonia when he was 5 months old. She developed toxoplasmosis, a parasitic infection, the following year; her right side is still partially paralysed.
During this harrowing time for Otieno, HIV/AIDS was fast gaining attention as a global human rights issue, setting into motion changes that would begin to turn around the HIV pandemic for the world — and for Otieno herself. Activists pressured pharmaceutical companies to remove patent protection on antiretroviral drugs to reduce the drugs' prices and called on manufacturers of generic medicines to create affordable versions. In 2003, a year's treatment cost a patient in a low- or middle-income country US$1,200 ($1,700). By 2018, it cost less than US$100 ($150).
Governments and international organisations began to commit more seriously to fighting HIV/AIDS. In January 2002, the Global Fund to Fight AIDS, Tuberculosis and Malaria was established with US$1.9 billion in pledges from Group of 8 nations. The next year, President George W. Bush announced the creation of the President's Emergency Plan for AIDS Relief, or PEPFAR, which began with a budget of US$15 billion for five years and was intended to bolster treatment and prevention in the hardest-hit countries, particularly in sub-Saharan Africa. In 2003, the World Health Organisation announced the "3 by 5" initiative, which aimed to get 3 million people on antiretroviral treatment by 2005. (The goal was not met, but it helped to spur international agencies into action.)
"PEPFAR changed the landscape of HIV services, bringing treatment to where the burden was," said Annette Reinisch, a senior disease adviser at the Global Fund.
"It sounds easy to say that more people are on ART today, but there's a big system behind that," said Lucie Cluver, a researcher at the University of Oxford and the University of Cape Town who specialises in HIV and children. "You have to get a pill from a pharmaceutical company to a tiny clinic on a hill, to get someone who knows enough and can engage the person who needs to take it every single day. There are all these logistical and procurement processes, all this stigma. These achievements reflect a level of complexity that is daunting when you think about it."
Within a decade of the UN's warning, HIV, which had been a lethal infection for millions of people around the world, had become a manageable chronic disease for many.
In January 2005, at a Doctors Without Borders clinic in a Nairobi slum, Otieno learned that antiretroviral treatment was available in Kenya. A counsellor warned her that the drugs could have side effects like rashes and vomiting, and that if she skipped any doses, she could develop worse infections. Support from loved ones was crucial. Otieno, realising she had a second chance at life, decided to take her treatment seriously. After years of keeping her status a secret, she disclosed the truth to her mother.
Are we winning the battle today?
The global fight against HIV/AIDS continues. In 2011, UNAIDS announced an ambitious campaign called Getting to Zero. Public health officials committed to the goal of zero new infections, zero discrimination and zero AIDS-related deaths by 2030.
But as the world has learned from Covid-19, lethal viruses have many ways of fighting back. In contrast to efforts to fight the virus that causes Covid, an HIV vaccine has eluded decades of effort. Many experts doubt the ambitious new targets will be reached by 2030. The virus still carries tremendous stigma, especially in places with laws that restrict homosexuality or policies that promote abstinence. Paediatric HIV remains a difficult challenge. Covid has also diverted resources from HIV treatment and prevention.
In July 2021, Otieno gave birth to a healthy baby boy. She continues to keep the virus under control through ART. Looking ahead, she says her work is focused on maintaining funding for HIV services so that people can continue to get treatment; if long-term care doesn't remain affordable for the millions living with HIV as a chronic disease, many people may fall off ART and become more infectious. Advocates are also pushing for advancements in preventive measures like pre-exposure prophylaxis, or PrEP — a daily pill to stave off infection — and trying to eradicate HIV stigma.
"We cannot be triumphant," Cluver said. "It would be a mistake to say we're winning. But we've made substantial inroads into reducing what could have been even worse."