Open Letter to AIDS Activists across the Globe
By Mark Heywood
It will soon be six months since the circus of the International AIDS conference left Durban, KwaZulu-Natal, in South Africa. The tents have long been disassembled. In the meantime, a staggering 600,000 more people have died of AIDS, almost all of them in developing countries. In 2015, 1.8 million people died of the ancient and treatable disease of tuberculosis, according to the World Health Organisation (WHO) . That’s way more than the equally horrific almost half-a-million (450,000 people) murdered since 2011 in the Syrian civil war.
Activists tried to say loudly in Durban that we are nowhere near ‘the end of AIDS’ and its associated epidemics. There are still two million new HIV infections a year globally. Twenty million additional people will still need antiretroviral treatment in the next five years if they are to avoid death. But there’s not enough money being provided – and not enough political will to make the money available.
These frightening statistics are not making headline news. In fact, they hardly make any news at all. After all, who cares? These are mostly the lives of the world’s black and poor people. They are people who weren’t carrying guns, threatening white lives, disrupting the geo-politics of neo-liberalism.
Well you should care, because we are the world’s other power: its civic power.
But we are not being heard. Why?
The world in which AIDS had its infancy in the 1980s and 1990s is not the same world in which it will hopefully experience its old age and demise. There are new political threats, most obviously one soon to be United States President Donald Trump. There are new instabilities and rising authoritarianism. Democratic space is being shut down in many countries of Asia and Africa.
These political changes are of profound importance to determining whether we end AIDS or whether AIDS ends a lot of us. These changes require activists to re-look at our strategy and methods. One of the areas where we have to reconsider is how we tie HIV prevention and AIDS care to human rights and what exactly that requires of us.
The Times are ‘a changing
During the 1980s and 1990s there was a valiant and largely successful struggle to frame AIDS as a human rights issue and to entrench a ‘human rights approach’ to AIDS. ACT-UP and the Treatment Action Campaign (TAC) took AIDS onto the streets. Public health experts and lawyers like Jonathan Mann, Michael Kirby, Edwin Cameron and many many others forced the powers of the world, governments in particular, to understand that risk of being infected with HIV was linked to the degree of one’s marginalization and criminalization by the state.
We pointed out that protecting the non HIV-infected required that you first protect the rights of people who had already been infected. A non-discriminatory environment would create the openness needed to treat AIDS. This was termed the so-called ‘AIDS paradox’.
Fighting for the human rights of people with AIDS required a mighty battle. But in some ways it went with the flow of the times. Neo-liberalism was a new kid on the block and for its own reasons it promoted the protection of some human rights – as long as they didn’t extend too far. For a short time demanding civil and political human rights was seen by developed capitalist countries as a way to prise open markets and allow The Market access to populations of virgin consumers.
Activists seized the time and we were able to develop and have adopted foundational policies like the UNAIDS/UNCHR International Guidelines on HIV/AIDS and Human Rights. However there was never, it must be pointed out, money to invest in systems and structures for the formal implementation of human rights at state level. That is partly why there has been so little measurable progress on improving the rights of what UNAIDS now calls ‘key populations’.
During the first decade of the 2000s, as a result of activists’ struggle for access to treatment, we made some limited progress in curtailing corporate power over pharmaceutical Markets; even forcing the World Trade Organisation (WTO) and rich governments to accept the principle that poor governments had a right and duty to intervene to reduce medicines prices.
Thus the 2000s became the golden age of lip-service to human rights.
On World AIDS Day 2016 AIDS remains a human rights issue. Discrimination(s) against people with AIDS continue. ‘Key populations’, women in particular, are denied equality.
But AIDS is more than just a human rights issue. AIDS is a social justice issue. The two overlap – but they are not the same.
In this new context UNAIDS and many countries in the world have adopted the bold targets of 90- (% of people knowing their HIV status), 90- (% on ARVs) and 90- (% with undetectable viral load) and Zero discrimination. But there is an elephantine truth hiding in the room next door, one that UNAIDS will soon discover. It is that we’ve reached a point in the response to AIDS where we can’t go much further without dealing with the social injustices and inequalities that are the real social determinants of HIV and AIDS.
The modern markers of HIV infection and death from AIDS are poor schooling, poor housing, poor health services, poor access to justice, poor access to employment. Discrimination is not only a state of mind – of homophobes and selective moralists. Discrimination is equally a state of economy.
Discrimination and social injustice are a state of economy
What do I mean by that?
In South Africa per capita expenditure on a child in Limpopo, one of our poorest and most corrupt provinces, is R1,117 per annum (less than $80). In a private school in Johannesburg per capita expenditure is in the region R200,000 ($14,285). In poor schools the incidence of HIV and teenage pregnancy is very high. In the rich schools it barely exists.
The same can be said of gross inequality in access to health care services and gender inequality. The state of many hospitals in South Africa was recently captured in an article by Justice Malala, one of our political journalists and commentators . On a more scientific basis, facility audits conducted by the Office of Health Standards Compliance (OHSC) have shown that “in the four years to March 31 2016, only 89 of the 1,427 public hospitals and clinics had met the office’s 70% pass mark.” Whilst it is true, as we often say that ‘AIDS is not a health issue alone’, AIDS prevention and treatment depends on a functional public health system.
Women and girls bear the brunt of all this misery. Maternal and child mortality may have gone down – but not by enough. In South Africa there is an epidemic of infant mortality arising from negligence at birth in public hospitals. This takes more infant lives now than HIV. Consequently, when activists and donors proclaim a selective concern with women’s lives, many women will not hear them. Why, they will ask do we want to protect them and their children from HIV but not from death during childbirth?
They may also ask whether what happens to women in hospitals or girls in schools is not simply a symptom of what happens to the female sex throughout life?
Good question too.
In June this year I wrote an open letter to South Africa’s Deputy President, Cyril Ramaphosa, in his capacity as Chairperson of the SA National AIDS Council (SANAC) . In it I argued that in view of what we know about the extremely high rates of HIV infection among girls, schools should become the focus of a huge mobilization of information, health services and better quality schooling. I pointed out:
“There are 25 741 schools in our country. These should be the sites where we concentrate the struggle against HIV. We should say that within six months every school should offer continuous quality sexuality education, especially about gender and sex, voluntary male circumcision, male and female condoms, Pre Exposure Prophylaxis, HIV and TB testing, access to HIV and TB treatment and support for adherence. If we did this, we would win.”
Unfortunately, that advice seems to have been lost on the AIDS experts. The National Strategic Plan 2017-2022, whose outlines will be presented in Johannesburg today, is nigh impossible for an ordinary person to decipher or work out its real priorities on HIV prevention and care.
AIDS as a social justice issue – the implications for activism
In conclusion, if we accept that AIDS is a social justice issue, what implications does it have for activism?
In essence it means that fighting for quality basic education for all children regardless of their class must become a primary strategy for HIV prevention. Similarly fighting for quality public health services, properly funded, equipped and staffed healthcare facilities must become a priority strategy for stopping people from dying of AIDS or TB.
Activists also must take some time to look at ourselves and at our own culpability. In the nineteenth century Marx gave the term ‘petit-bourgeois’ to people who had a bit of property but no real power. In return they sided with the rich even though their real interests were with the poor.
In the twenty-first century, the world is being irreversibly damaged and dominated by the one percent, the elites. But are many activists not its petit-elites? We are people who accept certain trappings of privilege, to keep us tame. In return we shut our mouths in the face of outrages. We accustom ourselves to the horrors of the world and although we will rage on AIDS, we will not show the same solidarity with the people of Syria or the migrant populations trying to enter Europe.
We must escape from the hypocrisy of convenience and shake off the mindset of beggars.
For example, we have several million reasons to be thankful for the United States President’s Emergency Fund for AIDS Relief (PEPFAR). These are lives saved. But what the United States government gave through PEPFAR with one hand, it took with the other through an ill-advised and anti-poor foreign policy and through promoting and protecting elites whose reckless disregard of our world deepens inequality and suffering.
Do we understand this? Do we say this?
Finally, we must shout-out about how the roots of social injustice lie in politics.
AIDS activism cannot ignore the great political challenges of our time. BREXIT, the election of Donald Trump, the growing drift towards racism in Europe must all be a wake-up call (). Trump’s election changes the game. What you see is now what you get. Trump is very different from the Clinton team, who talked left and acted right; who gave with one hand what they had stolen with another and then expected Nobel Prizes for their generosity. His Presidency will mark the end of the age of insincerity.
As a result AIDS activists need urgently to forge an agenda and a programme of action that talks to the world we live in, that is pro-poor, that recognizes our great achievements but also acknowledges our recent demise. People who will campaign the hardest will be the people who have nothing to lose. We need new allies. We need to look for the centres of civic power, such as in the trade unions (the International Trade Union Confederation, for example, has 175 million members worldwide), the environmental justice movements and organisations of faith.
During the 2000s we organized transnationally and developed a transnational agenda on crucial rights questions, particularly access to medicines. Yet today the pharmaceutical companies are running rough-shod over us.
But access to medicines is not just an AIDS issue, it’s a health and equality issue. Ask Tobeka Daki, who you may have seen leading demonstrations at the AIDS Conference in Durban against Roche. Or rather don’t.
Tobeka is dead now . According to TAC, Tobeka needed the anti-cancer drug Trastuzumab but “could never access it due to its high price.” A few months ago her breast cancer spread to her spine. Her doctor previously wanted to put her on Trastuzumab. We do not know if Trastuzumab would have saved her life – but because of the high price she never had the opportunity to try.”
However, international organisation starts at home. It starts with activism in your community, wherever that community is, whatever part of the world you live in. Activism is about building self-reliant communities that know their rights and will confront injustice. It is about solidarity.
Activism promotes constant citizen engagement with political and economic powers to ensure accountability and quality of public services. It builds self-reliant branches of self-reliant people.
And the premise of our renewed struggle must be that that there’s enough money for universal access to health care and AIDS treatment and for quality education and access to sufficient food. As US playwright and activist Larry Kramer said so many years ago at the start of this epidemic It is “political choices” that deny this money to communities. Equality won’t be given to the poor on a plate.
It must be demanded.
In truth there’s no end to AIDS before the beginning of a new world.