For over 30 years activism has been the engine that has driven almost every advance in our response to the AIDS epidemic. Mark Heywood assesses the state of activism in 2018 and the way forward.
Activism forced the development of ARVs. Activism brought their prices down. Activism demanded the inclusion of people living with HIV in planning and implementing responses to AIDS. Activism made governments and the UN recognize the existence of sex workers and drug users and prisoners. Activism overcame AIDS denialism in South Africa. Activism forced political will and birthed UNAIDS, the Global Fund and PEPFAR.
This week, as the world gathers for the 22nd International AIDS Conference, we have again seen powerful activism, particularly by women demanding accountability and action on sexual harassment.
But even as we see that activism is alive and well (well sort of), it is necessary for activists to stop and reflect on where we are and where we must go if we are to end AIDS.
To start with we must recognize that AIDS activism started in a different world. Protests by groups like ACT-UP started in the era of George Bush and Margaret Thatcher, the conservative architects of the disastrous neo-liberal world we live in. But whilst neo-liberals were busy dismantling welfare states, the 1980s and 1990s were also a time when activists were growing more assertive about our human rights across the world.
You could say that people with AIDS were amongst the first activists to take human rights seriously and demand that they be felt in our lives. We formed organisations like the Treatment Action Campaign and used human rights and the law as swords against multi-national pharmaceutical companies and shields against bad governments.
Once the ‘human rights approach to AIDS’ was accepted it was captured in documents like the 1996 UNAIDS/OHCHR International Guidelines on HIV and Human Rights. We used these principles to build a movement that started in communities, spread across nations and eventually became global.
In those days activists took risks, we educated and mobilized ordinary people. We spread literacy about HIV, taught people about the law. We came to each other’s aid. We were independent and not conflicted.
We hadn’t been co-opted.
When we started fighting back nobody was on antiretroviral treatment. Through a continual mobilization we won great victories and helped to save millions of lives. Today an unthinkable 21.7 million people are on treatment worldwide. But eventually, in part because of our victories, we were tamed and became complacent.
We were co-opted with a cocktail of per diems, proximity to power and air travel.
We became part of the elite, part of the problem, we got a stake in the system. That means those who are left behind today got left behind because of us.
As a recent Lancet Commission report has shown us, amongst those left behind were the millions of women and girls who are still denied sexual and reproductive health rights that are fundamental to protection against HIV.
We left behind 200 million women who want to avoid pregnancy but can’t access modern contraception.
We left behind 25 million women who still have unsafe abortions every year.
We left behind everybody who still dies of TB.
We left behind people with mental illnesses. We forced the pharmaceutical companies to make medicines affordable for HIV but not for cancers.
The #MeToo movement and the scandal concerning sexual harassment at UNAIDS has exposed the tip of a big iceberg. We left behind women who are victims of male predators.
This week, reports presented to the International AIDS conference confirm what we have been saying: AIDS is far from over. We hear talk about a “rebound”.
But at the moment the activist engine feels like its stalled. Whilst they may engage in protest and noise-making in Amsterdam the truth is many of our civil society leaders have been co-opted. They collude and are morally corrupt.
So, we need to ask ourselves some questions.
How do we restore accountability and transparency amongst ourselves? What about life-style audits for activists?
What is our vision? For example, protest has always been one of the most essential ingredients of activism, but if it is to be effective it must be sustained and it must lead to a plan to resolve a problem. What is our plan? Without a plan protest risks being just theatre. The people we protest against have learned how to live with it.
What type of protest are you doing?
Finally, this week UNAIDS said again that “Health is a human rights imperative” claiming to be “deeply concerned about the lack of political commitment and the failure to invest in proven HIV programmes, particularly for young people and key populations.”
However, today as another generation considers how to revitalize activism it is important to discuss the implications of the fact that we live in a very different world from the one we started our campaigns in. This is the time of big men like Trump, Putin and Ji Xinping who no longer pretend to be concerned about human rights rules. It is a time of growing crisis facing poor and middle-class people, caused by economic dislocation, permanent unemployment, climate change and war. Each one of these crises will feed the AIDS epidemic and dismantle the systems we need to respond to it. In this new context the ‘human rights approach to AIDS’ must evolve into a ‘social justice approach to AIDS’.
Social justice means striving for equality and rights.
Inequality in education makes girls vulnerable to sexual abuse and HIV. Without quality education systems we cannot end AIDS.
Inequality in health means access to drugs for cancer or mental illness depends on whether you are rich or poor. Without quality public health systems, we cannot end AIDS.
Without housing, or sufficient food or water, we cannot end AIDS.
It’s time for AIDS activists to dream once more and to start to take risks again.
It’s time for AIDS activists to plan and make new alliances.
It’s time to join the dots or die.
Mark Heywood is an Activist and co-founder of the Treatment Action Campaign, AIDS Law Project and SECTION27.