By Chikwe Ihekweazu
I have profound memories of the 13th International AIDS Conference that was held in Durban, South Africa, in July 2000. I was privileged to be part of 12,000 people from all over the world who attended, including scientists, clinicians, healthcare workers, public health agencies, people living with HIV/AIDS, and at least 100 from Nigeria. For me, it was a turning point, as I realised that HIV/AIDS would be the most significant disease in my professional life and one I wanted to contribute to.
I arrived Durban on a chilly July afternoon on the first day of the conference. At the opening event that evening, a tiny figure in a shiny dark suit walked up to address those gathered. At that time just an 11-year-old boy, Nkosi Johnson 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.”
Nkosi Johnson speaking at the AIDS Conference in South Africa in July 2000. Image Credit: http://cdn.mg.co.za/crop/content/images/2016/03/11/nkosijohnson_landscape.jpg/744x418/
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.
I was one of the first to arrive that day, and took a seat on the front row. Judge Edwin Cameron, a senior judge in South Africa who was living with HIV was to deliver the Jonathan Mann lecture. He delivered one of the most passionate speeches I have ever listened to, addressing the prevailing inequity of access to ARVs in Africa at the time.
Judge Edwin Cameron says ARVs lifted him off his deathbed. Photo Credit: Chikwe Ihekweazu
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 one US dollar a day, I can afford monthly medication costs of approximately US$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 Constitutional Court in South Africa and will again be speaking at this year’s conference, 16 years later. At the time, there were just a handful of people on ARVs in Africa, today there are over 7.5 million Africans on treatment.
At the periphery of the conference the Treatment Action Campaign (TAC) was finding its voice, highlighting the fact that focusing on the science at a conference like this was not enough, but 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 look forward to meeting one of my heroines, Vuyiseka Dubuya, one of the leaders of the TAC, who reflected on her experience during her TEDxEuston talk in 2013.
I had come to the conference on the back of a trip to Nigeria, where I had carried out a small study on “Expanding Access to AIDS through Physicians in Private Practice: An Exploratory Survey of Knowledge and Practices in Two Nigerian States”. However, at the time, the talk of the town in Nigeria was of a certain “Dr Abalaka”. During one of the worst periods in journalism in Nigeria, newspapers went to town extoling his virtues.
But out of the darkness of the reportage on Abalaka rose journalist/activist Omololu Falobi, who was one of a kind. In 1998, he formed a coalition of journalists in Nigeria called Journalists Against AIDS in Nigeria (JAAIDS) and his group became the most credible source for stories and policy advocacy on HIV/AIDS in Nigeria. 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. Read Ike Anya’s emotional tribute to him. There is no doubt that Omololu’s pioneering work influenced the emergence on Nigeria Health Watch.
Nigerian HIV/AIDS activists in 2000, led by Mohammed Farouk Auwalu, who at the time was the President People Living With AIDS in Nigeria. Photo Credit: Chikwe Ihekweazu
As was the norm in all the early years of the international conferences on AIDS that we have attended, there are always 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 NACA, which was still a committee at the time. The meeting held at the Chamber of Commerce Building, Stanger Street, Durban. We were one year into our new democracy, with an HIV prevalence that had just crossed the 5% mark, and Nigerians were enthusiastic about defining the way forward. I remember that meeting like it was yesterday, as Professor Akinsete had asked me to take minutes. A wide variety of issues were discussed on the day — a plan to place the first 10,000 patients on ARVs, a new strategic plan, negligence of NGOs, poor research capacity and the pervasive “Abalaka issue”.
Attendees at the meeting of Nigerian delegates at the 13th International Conference on AIDS in 2000, in Durban. Photo Credit: Chikwe Ihekweazu
From the 16th of July 2016, we will return to Durban, 16 years after the first conference in Africa for only the second International Conference on AIDS to hold in Africa. A lot has changed in 16 years and a lot has stayed the same. 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 ARVs has reduced significantly, to about $100 per patient per year, driven by the aggressive advocacy of the 2000s and the post-Mbeki roll-out of the biggest public sector ARV treatment programme in the world, in South Africa. In 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.
In Nigeria, there has been progress, but it been painfully slow, despite enormous resources thrown at the disease. We have 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.
As we return to Durban for the 21st International AIDS Conference, taking place from. 17–22 July 2016 , we promise to bring you incisive stories from the conference as it concerns Nigeria.
If you are a researcher or policy-maker attending — let us know your contribution and we will share with Nigerians. You can reach us at firstname.lastname@example.org.
If you are a concerned citizen, you can either wait for our posts next week, or you can follow us on twitter @nighealthwatch.com, using the hashtag #AIDS2016.
Whatever you decide, join the conversation.