HIV: Don’t Live in Ignorance (Part 1 of 2)

A reflexion on Lord Fowlers’ AIDS Don’t Die of Prejudice.

Whilst looking for an opening sentence for this musing, I wondered who could be interested in Lord Fowler’s book on Aids in the year 2014. I checked the Amazon website and found that Fowler’s travelogue was ranked 41,471 on Amazon UK Bestsellers list. Number 1 at the time of writing was a yet to be published adult version of a kindergarten activity book by a social media histrion who challenges his “readers” to complete a journal of pointlessness and do virtually nothing with pride. I shall come back to that.

Lord Fowler’s book is not an history of the response to HIV/Aids but an overview of how HIV is being dealt with more than 30 years since the discovery of the virus that causes Aids. In an engaging and lively narrative (gossips included) Lord Fowler recounts his journey through time and space, pinning the story on what is happening in nine cities across five continents where the epidemic is partially controlled, still uncontrolled or on the verge of exploding to expose the sheer nonsense that drives the response to the epidemic.

That in 2014 the virus and Aids are still a problem worldwide would surprise many who are not long-time familiar with HIV and who may hear every week that a cure is around the corner. But what is even more surprising is how little our perception of the virus and of those living with it or at risk of being infected with it has changed since 1981 when the first case was formally reported. This is even more tragic in those countries which have been most affected by Aids.

Iconic 80s billboard (Photo: Johnny Stiletto)

The opening chapter is set back in the late 80s, when little was known about the disease other than that it was mostly sexually transmitted and that there was no cure or treatment. “It was not a time be too delicate” wrote Lord Fowler recalling his struggle to get pass the Iron Lady’s objections to a national campaign of information based on straightforward messages. Today these would fall on deaf ears and would be perceived as unnecessary and inefficient scaremongering (rightly or not).

At the time, and still now, a common and shared fear of those in charge of preventing the spread of HIV was that straightforward sexual health advice, which often requires explicit language. would incite people to engage in risky sexual behaviours or in activities that they would not otherwise engage in (such as anal sex, much to the annoyance of then Lady Thatcher and now Pastor Martin Ssempa). It was a “regrettable necessity” in the words of the General Home Affairs Committee which finally approved the campaign back in 1986.

Despite tried and tested approaches providing the evidence that being direct works, the public and those most at risk were deprived of valuable information because it may give them ideas that conservative Britain preferred them not to know (or that a section of conservative Britain ignored existed or prefered to ignore existed). This patronising stance would find many emulators in the following 30 years, often men who knew little about sex such as Church leaders. Nowadays prevention that is too direct is still frown on, even by those it aims to help and even in “progressive” countries. But the first victims are often kids who are deprived of a knowledge that could make a crucial difference as they grow up.

One of the key issues of disagreement then and now was the framing of the epidemic? Was it a public health issue or was it a moral issue? In sub-Saharan Africa or in Central Europe and Asia, HIV is still perceived as a disease of those perceived as morally corrupt, such as sex workers and drug users or as sexual deviants such as gay men and transgender people. Though in all honesty the same beliefs can be found in the Western world.

The failure to understand HIV as a global health issue pervades the historic response to the epidemic and continue to hinder the implementation of evidence-based responses to it. The conservatism that prevents sex education at school (better left to parents who have themselves be taught little about it), the opposition to equal rights whatever one’s sexuality, the perception of sex workers and IDUs as social pariahs, and above all the lack of political will to tackle misconception, stigma and discrimination are found from Entebbe to Kiev, Moscow to Washington DC, London to New Delhi to name only a few places visited by Fowler.

But it is not just politicians who are failing the public. Churches and spiritual leaders have a huge responsibility in the propagation of the virus with their dogmatic position on condoms and their opposition to equal rights for LGBTs. In Uganda, Russia, or Ukraine, religious organisations whatever their denominations, have done more to spread Aids than to stop it. And when religious leaders such as Archbishop Orombi , former leader of the Anglican Church of Uganda wrote in 2007 that “the younger churches of Anglican Christianity will shape what it means to be Anglicans. The long season of British hegemony is over” (p. 83 and source here), there is little hope that a modern, more liberal form of Christianity would be able to affect the political and social response to HIV in an over-zealously religious sub-Saharan Africa. On the contrary, it would only be perceived as another attempt by the West to re-colonise Africa. It is saddening to see former European colonies gaining their political independence, often after long struggles, to remain victims of religious colonialism and be proud of it.

However, it would be hypocritical to point a finger at the shortcomings of countries struggling to come to term with rapid development, the spread of democratic processes and the West’s vision of what a tolerant and modern society should be, when the rich and developed West (or North) is itself struggling to carry out at home what it preaches abroad and when it is proselytising in Africa. In many respects, the epidemics in Washington DC or in Lewisham is on a part with the epidemic in a number of African countries. Nothing to brag about. Syringes and needles exchange programmes are still banned in many US states, gay men are still being hounded out in the UK as much as in Russia, hanged in Iran, and sex workers are still criminalised pretty much everywhere but Australia.

The polity failing, it is international non-governmental organisations that have been leading the fight. Lord Fowler’s book is a reminder that although these seems to have been around for ever many institutions are at best a generation old. UNAIDS was established in 1994 and launched in January 1996. The Global Fund started to operate in January 2002 and PEPFAR was born out of “compassionate conservatism” in 2003. These organisations, though not always perfect (PEPFAR anti-prostitution pledge will remain a dark spot on the historical success of the programme), are nevertheless playing a key role in taming the epidemic and without the vision and leadership of a few men of good will the world would be a much worse place.

In a strange turn of events, Fowler notes that a few liberal heroes, such as Bill Clinton and Nelson Mandela, will bear the blemish of inaction for not having done much whilst they had an opportunity and the power to do so. But the US public and polity were more interested in their president’s sexual behaviour than in the sexual health of the nation. As for Mandela, managing the country’s transition out of Apartheid was understandably a more urgent issues on his agenda. Both men have however done much since they left power.

However, there was no pretext for his successor Thabo Mbeki for doing nothing and certainly no excuse for him and his health minister Manto Tshabalala-Msimang to actually worsen the epidemic. Between 1994 and 1999 Mbeki was serving as deputy President with Aids in his portfolio. The consequences? In 1990 there were fewer than 100,000 people living with HIV in South Africa, a decade later there were almost four millions; the result of political immobilism, scientific and cultural denialism, and political opportunism.

And this is a remarkable constant of the response to HIV/Aids: political will, or lack thereof. The response to Aids has been and still is “to do virtually nothing with pride” in many countries or worse, to pander to interests groups and to human fear. Fear, which manifests itself through stigma and discrimination against women, sexual minorities, the infected and many others perceived as social misfits. Fear, stigma and discrimination are recurring themes during Lord Fowler journey. Fear that sexual education will pervert children, fear that being up-front will send the wrong message, fear that gay men will pervert society’s institutions, fear that sex workers and IDUs will spread the virus amongst the good people if they are not controlled, jailed or even killed.

And the response?

Ignore the evidences, ignore that stigmatisation and discriminating restrict access to healthcare and increase risk of transmission, ignore that needles and syringes exchange programmes are an effective means to reduce the number of new infections amongst IDUs, ignore that human rights provide safety and security to those most at risk. On the contrary, go full steam for a knee-jerk reaction, criminalise all those most at risk or affected with HIV, criminalise transmission, sex-workers and gay men, strip and beat IDUs until they say that they will not inject (p.132).

The brutality and cruelty with which we treat each other, especially the most fragile elements of our society, is frightening.

However, we should not just focus on stigma and rejection, we need to look beyond the words and remember that they are born out of people, human beings, maybe far away, but maybe our neighbours and even ourselves. It is people who object to interventions based on evidence. It is corrupt people who divert funding for treatment and prevention. It is people, men and women, who abuse and beat gay men in Russia as much as in the streets of Edinburgh. It is people who object to their children being taught the basics of sexual health. It is people who let others, religious leaders or populist jingoistic politicians, to think for themselves.

But it is also people who may engage in behaviours that put them at risk (I refuse to use the word reckless – I don’t think it is ever a reckless decision). They do it for a number of reasons, one being the dangerous new belief “that all is needed these days is one pill a day” whether it is for prevention or for treatment or the naïve belief that people will tell you if they have HIV (And then what? Shun them off?). We should not ignore our individual responsibility in the epidemic and the role we can play to end it. We will need a revolution and it will have to come from within wrote Lord Fowler. That revolution will not happen if we keep living in ignorance.

In part 2 I will be looking at some of Lord Fowler’s propositions that could make a difference.


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