Reinventing the HIV Organising: Lessons from ICASA 2019


Dennis van Wanrooij


From 2-7 December 2019, the largest regional HIV conference took place in Kigali, Rwanda. The country that once witnessed the genocide of the Tutsi minority and civil war from the early to mid-90s opened its conference centre to discuss the impact of the HIV epidemic in Africa. Today Rwanda is led by President Paul Kagame, who has been a political leader for the past two decades. Although criticism of his government is not permitted in Rwanda, he and his ministers did show up at the conference. And promises to end the epidemic were made.

Just like Rwanda changed, the post-colonial context in Africa is rapidly evolving as well. Greater appetite for democracy has led to higher hopes that the Human Rights framework can be used to support community demands. In the context of HIV, we observe the continuous call to put communities at the centre of the HIV response. But who are these communities? These are the very often criminalised, stigmatised and discriminated-against communities targeted by laws against homosexuality, sex work, drug use, and to not forget, HIV.

In this context, the so-called ‘key populations’ are both the solution and the problem. They are the solution because a significant amount of scientific research points out to better public health outcomes when communities are involved in the HIV response. The problem, on the other hand, is the limitation of the HIV framework to talk about Africa’s Human Rights concerns that fuel the epidemic. Hence, the language of ‘key population’ is at least distracting. Colonialism played a significant role in making sure that people at the margins of society in many African countries do not have a voice. Today, those at the margins are slowly taking up their power and advocating for their Human Rights, despite the increasingly challenging and closing space for civil society.

Some had high hopes that conversations around Universal Health Coverage (UHC) would lead to a more comprehensive health framework to address the needs of the communities most impacted by the epidemic, as well as create a better integration of HIV and SRHR services. The reality is that UHC is another framework created by governments and not by communities themselves, which results both in regional and global neglect of HIV and limited financing and commitments to the priorities set by civil society.

Similarly, the Sustainable Development Goals (SDGs) remain a segregated conversation. HIV is no longer an SDG priority. Not surprisingly, a global financing crisis to the HIV response is taking place amidst heated discussions on sustainability and social contracting. What we do know is that sustainability is not possible when the people most affected by HIV are criminalised. Delegates were outspoken about governments not willing to decicate funds to advocacy and community responses.

Under these political and economic instabilities, HIV activists see themselves obliged to reinvent HIV organising. ICASA 2019 has proven so far that another HIV movement is urgently needed. HIV can no longer be the one and only theme in the conference despite the still alarming epidemiological and stigma index data in sub-Saharan Africa. The reignition of the fight will come with communities taking over the agenda of the HIV movement, including its conferences. It comes with the need for reframing HIV demands in the face of the evolving Human Rights, UHC and SDG frameworks. It comes with the necessity of more radical and politicised conferences that talk about people power to change the systems of oppression that make HIV a higher burden to specific communities. It comes with reinventing the language we use and the way we convene and form alliances.

As a non-binary person attending ICASA, I was surprised to see how many delegates have made discriminatory gestures and comments towards me in the corridors of the conference because of my gender identity. Other trans people who attended the event also experienced high levels of discrimination on site. Given the industry that HIV has become, we cannot take solidarity for granted. Nor can we forget the vision that established the HIV movement in its earlier days. We have silenced our voices while growing into key populations. And we have still not solved the urgent issues experienced by our communities because the agenda is not designed by those affected by systems of oppression.

A global shift in the way we organise needs to happen not only in the HIV sector. We need to build a critical and activist mass that own their agendas and strive against the institutionalisation and pharmacalisation of the HIV movement. Although technology and science are critical they come with a hidden neoliberalist and economic agenda that create inequality and most of the problems our communities experience including HIV. We need to draw the line now, learn from the past and create something new.

Dennis van Wanrooij is Internartional Project Manager at COC Nederland

Comments (2)


Thank you for such a well articulated article Dennis! I couldn't have agreed with you more as I also re-echo your words, "And we have still not solved the urgent issues experienced by our communities because the agenda is not designed by those affected by systems of oppression."


Thank you for the Article and as GNC person, I can hear my Voice in your words! Bottom line: "And we have still not solved the urgent issues experienced by our communities because the agenda is not designed by those affected by systems of oppression." Thank you Dennis!

Leave a Reply

Your email address will not be published. Required fields are marked *