AIDS: We Must Not Forget

The world’s top HIV/AIDS experts are gathering in Durban, South Africa for the 21st International AIDS Conference – a meeting that fills me with hope that an opportunity is at hand to finally get the disease under control, but it’s an opportunity that is tempered with a little caution.

I am hopeful because the last time the conference was held in Durban in 2000, a moving experience for me personally, it was followed by real collective action around its theme “Breaking the Silence”, which was primarily about improving access to services and reversing widespread stigma and discrimination. I am also cautious in hoping for too much since we have known for some time what to do to bring the pandemic under control, yet that dream remains an elusive one.

At the time of Durban 2000, I was CDC’s Country Director in Botswana, which was a period of astronomical AIDS-related mortality and frustration throughout the region. Botswana had the highest HIV prevalence in the world. Funerals were a constant reality. The best and brightest segments of the population were dying at alarming rates – teachers, health workers, soldiers and police, businessmen, or anyone in which mobility affected their lives. President Bill Clinton had visited Botswana in 1998 and the word “AIDS” received no mention. A close colleague died from “that disease” and at the funeral in the home village relatives described how “demons had reached up from the underground”.  Fellow African health professionals, whom I admired tremendously for their endurance, were quitting or refusing to care for AIDS patients because of the inevitable mortality they had experienced time and time again. It was hard enough to access an HIV test, let alone treatment. Highly active anti-retroviral therapy, or HAART, had been revealed at the AIDS conference in 1996 yet the cost of drugs at $5,000 per year put that hope out of reach for the masses. That was the frustration.

Durban 2000 was to change that. Nkosi Johnson, an 11-year-old South African child living with HIV/AIDS gave an impassioned and tearful speech, calling on the South African government to make treatment accessible, which it has, albeit with delays during President’s Mbeki’s tenure of deadly denialism about the causes of AIDS. Nkosi died soon after the conference. Speaking at the closing, President Nelson Mandela further inspired the audience and left us with a resolve to return to our countries and fight the war:

“…… We need, and there is increasing evidence of, African resolve to fight this war. Others will not save us if we do not primarily commit ourselves. Let us, however, not underestimate the resources required to conduct this battle. Partnership with the international community is vital. A constant theme in all our messages has been that in this inter-dependent and globalized world, we have indeed again become the keepers of our brother and sister. That cannot be more graphically the case than in the common fight against HIV/AIDS. ….” Nelson Mandela, 2000

Thanks to the leadership of President Festus Mogae, a former World Bank economist, Botswana became the first African country to roll out national programs. Other government officials heard the promise of anti-retroviral therapy (ART) and returned to lobby their countries to invest in testing, prevention of mother-to-child transmission, and comprehensive ART programs. Many have, like South Africa invest more than $2 billion per year in the epidemic. Many countries could do much better, such as those who rely excessively on external donors and invest little in their own epidemics from their own national budgets. There was a call in Durban 2000 for the formation of a “Global Fund” as a global financing mechanism, and indeed it was established through collective governmental and non-governmental action in 2002. And then President George W. Bush announced PEPFAR (The United States President’s Emergency Plan for AIDS Relief) in his 2003 State of the Union Address, which with tremendous bipartisan Congressional support has been the largest investment in a single disease in history.

New HIV infections and HIV/AIDS-related mortality have since plummeted to record lows. But we must not forget the past when the high mortality rate was so visible, so tragic, so preventable, and so harmful to households, communities, and society as a whole. We must not forget the importance of placing stigma and discrimination, a major obstacle to access, at the top of the agenda and which will require more local leadership than ever. And we must not forget that, in Durban 2016, we now have the tools at our disposal to bring the HIV epidemic under control, unlike in Durban 2000.