What Can One Life Tell Us About the Battle Against H.I.V.?


Hindsight is a series from the Headway team looking back at predictions and promises from the past.

The story of the past two decades of the fight against H.I.V. can be told through the life of Juliet Awuor 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 H.I.V.

“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 H.I.V. I also did not want to be associated with H.I.V.”

That year, United Nations projections indicated that as many as 150 million people worldwide would have been infected with H.I.V. by 2021. But that disastrous fate did not come to pass. The Joint United Nations Program on H.I.V./AIDS, known as U.N.AIDS, estimates that around 79 million people have been infected with H.I.V. 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 H.I.V. 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 $10,000 to 15,000.

Ms. Otieno, a reproductive health advocate, was put on an antibiotic, Septrin, to avoid the opportunistic infections that can accompany H.I.V. “I was not even told about ART — I did not know about ART,” she said. She was ashamed of being H.I.V.-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 H.I.V. 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 paralyzed.

During this harrowing time for Ms. Otieno, H.I.V./AIDS was fast gaining attention as a global human rights issue, setting into motion changes that would begin to turn around the H.I.V. pandemic for the world — and for Ms. 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 $1,200. By 2018, it cost less than $100.

Governments and international organizations began to commit more seriously to fighting H.I.V./AIDS. In January 2002, the Global Fund to Fight AIDS, Tuberculosis and Malaria was established with $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 $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 Organization announced the “3 by 5” initiative, which aimed to get three 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 H.I.V. 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 specializes in H.I.V. 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 U.N.’s warning, H.I.V., 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, Ms. Otieno learned that antiretroviral treatment was available in Kenya. A counselor 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. Ms. Otieno, realizing 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.

The global fight against H.I.V./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 H.I.V. 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. Pediatric H.I.V. remains a difficult challenge. Covid has also diverted resources from H.I.V. treatment and prevention.

In July 2021, Ms. 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 H.I.V. services so that people can continue to get treatment; if long-term care doesn’t remain affordable for the millions living with H.I.V. 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 H.I.V. stigma.

“We cannot be triumphant,” Ms. 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.”

Headway is an initiative from The New York Times exploring the world’s challenges through the lens of progress.

The Headway initiative is funded through grants from the Ford Foundation, the William and Flora Hewlett Foundation and the Stavros Niarchos Foundation (SNF), with Rockefeller Philanthropy Advisors serving as a fiscal sponsor. The Woodcock Foundation is a funder of Headway’s public square.


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