I have profound memories of the 13th International AIDS Conference in Durban, South Africa. It was July 2000 and I was among 12,000 people from across the world who attended: scientists, clinicians, health-care workers, public-health agencies, and people living with HIV/AIDS.
For me, it was a turning point. I realised that HIV/AIDS would be the most significant disease in my professional life. I wanted to contribute to the fight against it.
At the opening event, a tiny figure in a shiny dark suit walked up to address those gathered. Nkosi Johnson, who was just 11 at the time, brought most of the delegates to tears as he told his story. His words that night have stayed with me:
Hi, my name is Nkosi Johnson, I am 11 years old and I have full-blown AIDS. I was born HIV-positive … Care for us and accept us – we are all human beings … We are normal. We have hands. We have feet. We can walk, we can talk, we have needs just like everyone else. Don’t be afraid of us … we are all the same.
He died one year later, at the age of 12. At the time of his death, he was the longest surviving child born with HIV in South Africa.
Another delegate was Judge Edwin Cameron, a senior jurist in South Africa who was living with HIV. He delivered the Jonathan Mann lecture, one of the most passionate speeches I have ever listened to. Cameron addressed the prevailing inequity of access to antiretrovirals in Africa at the time. I particularly remember this quote:
I exist as a living embodiment of the inequity of drug availability and access in Africa. My presence here embodies the injustices of AIDS in Africa because, on a continent in which 290 million Africans survive on less than US$1 a day, I can afford monthly medication costs of approximately $400 per month. Amidst the poverty of Africa, I stand before you because I am able to purchase health and vigour. I am here because I can pay for life itself.
Cameron, who reflected on those epic years in his book, “Witness to AIDS”, still serves on the bench of South Africa’s Constitutional Court. At this year’s conference, he will once again be speaking – and, 16 years later, much has changed. At the time, there were just a handful of people on antiretrovirals in Africa. Today there are more than 7.5 million Africans on treatment.
On the periphery of the 2000 conference the Treatment Action Campaign, a South African HIV/AIDS activist organisation, was finding its voice. It was highlighting the fact that focusing on the science at a conference like this was not enough; that we also had a responsibility of “breaking the silence”, as the conference was themed – to speak up about the injustices of those times.
I had come to the conference on the back of a trip to Nigeria, where I had carried out a small study to expand access to AIDS through physicians in private practice. It was an exploratory survey of knowledge and practices in two Nigerian states. At the time, the talk of the town in Nigeria was of “Dr Abalaka”, a surgeon turned immunologist who claimed to have developed an HIV vaccine.
In one of the worst periods in Nigerian journalism, newspapers went to town extolling his virtues.
But out of the darkness of the reportage on Abalaka rose journalist and activist Omololu Falobi, who was one of a kind. In 1998, he formed a coalition called Journalists Against AIDS in Nigeria. His group became the most credible source for stories and policy advocacy on HIV/AIDS in the country.
Like most good things and people in Nigeria, we lost him too soon when unknown gunmen shot him on his way home from work in Lagos in 2006.
It was the norm in all the early years of the international conferences on AIDS that there were meetings called for all Nigerians attending or those working on HIV/AIDS in Nigeria. The meeting at the Durban conference in 2000 was chaired by Professor Ibironke Akinsete, the then chairperson of National Agency for the Control of AIDS, which was still a committee at the time.
Nigeria was one year into its new democracy, with an HIV prevalence that had just crossed the 5% mark, and Nigerians were enthusiastic about defining the way forward.
A wide variety of issues were discussed on the day – a plan to place the first 10,000 patients on antiretrovirals, a new strategic plan, negligence of non-governmental organisations, poor research capacity and the pervasive “Abalaka issue”.
In Nigeria there has been progress, but it’s been painfully slow despite the enormous resources thrown at the disease. There is a response programme that is still almost completely donor-funded. Less than 20% of those infected with HIV are on treatment and Nigeria has the biggest burden of mother-to-child transmission of HIV, leading to about 50,000 new infections in children every day. Yet despite all of this, there is no sense of urgency and it seems to be business as usual.
Things have changed but remain the same
This year we will return to Durban, 16 years after the first conference in Africa for only the second International Conference on AIDS held in Africa.
Globally, we still do not have a cure, but it is no longer the death sentence that it was in 2000. The discovery of highly active antiretroviral drugs has made HIV/AIDS more of a chronic disease, and is beginning to have an impact on prevention.
The cost of antiretrovirals has reduced significantly, to about $100 per patient per year. This has been driven by the aggressive advocacy of the 2000s and the roll-out of the biggest public-sector antiretroviral treatment programme in the world in South Africa in the years after Thabo Mbeki’s presidency, during which the government refused to roll-out antiretrovirals.
By 2013, an estimated 24.7 million people were living with HIV in sub-Saharan Africa accounting for 71% of the global total. In the same year, there were an estimated 1.5 million new HIV infections and 1.1 million AIDS-related deaths.
A lot has changed in 16 years and much has stayed the same. But there’s still lots to talk about. Join the conversation.
This is an edited version of a blog that appeared on Nigeria Health Watch. The blog will also be providing updates from the conference.