When 11-year-old Nkosi Johnson took the stage at the opening ceremony of the 2000 International AIDS Conference in Durban, he was representative of many of those living with HIV in South Africa at the time. His mother was HIV-positive, with little money and no access to quality HIV prevention tools or treatment. Nkosi was born with the virus. In their small township east of Johannesburg, they lived in fear that the community would find out about their illness and chase them away. The environment could not have been less welcoming of people living with HIV. With Nkosi’s mother’s health rapidly deteriorating and no direct family willing to care for her son, she sent him to an AIDS centre in the city. He was cared for by one of the centre’s volunteer workers, Gail Johnson, who later became his foster mother. By the time he took centre stage at the conference in Durban, he was the longest-surviving child born with HIV. Speaking softly but with strong resolve, he reminded the world that he and other people with AIDS were no different than anyone else and all were equally deserving of care and treatment. His plea rings as true today as it did then.
In 2000, high-income countries were on the road to eliminating new HIV infections among children. But in developing countries, hundreds of thousands of children still began their lives with HIV. AIDS 2000 in South Africa vividly illustrated this tale of two worlds – developed versus developing – and not just for children. Millions of adults were denied access to lifesaving medicines for a variety of reasons, including questionable political commitment. As delegates met in Durban, the country’s senior-most political leaders were still blocking access to antiretroviral therapy, heeding myths rather than scientific evidence.
Delegates at AIDS 2000 launched perhaps the greatest movement in global health history. For the first time, our community vowed that there would no longer be one standard of care in rich countries and another one everywhere else. Whether someone benefited from the fruits of scientific research, it was agreed, would no longer depend on an accident of birth.
Sixteen years later, the HIV landscape has dramatically changed. Millions of people from all walks of life now have access to HIV treatment, and scores of countries are on track to eliminate mother-to-child transmission. South Africa, now home to the world’s largest antiretroviral treatment programme, has seen life expectancy rise by nearly a decade in only 10 years’ time.
In 2000, neither the limited array of proven HIV tools nor the state of the global response permitted even the most optimistic conference attendee to contemplate the end of the epidemic. Now, in 2016, we look back on a string of successful advances and approaches in HIV prevention, care and treatment. But these advances are still not reaching everyone most in need, and they are not enough on their own to end the epidemic. Much more remains to be done before we can realistically talk about the end of AIDS. Until those who are the most marginalized and stigmatized can meaningfully participate in scientific, community and policy gains, the end of AIDS will remain elusive.