HIV and the politics of fear

By Matthew Weait, Professor of Law and Policy (Birkbeck College, University of London, United Kingdom)

For the past decade or so I have been privileged to participate in, and contribute to, national and international policy initiatives concerned with the criminalization of HIV transmission, exposure and non-disclosure. The people involved in this work, paid and unpaid, have been tireless in their efforts to draw the attention of those with legislative power to the negative impact that punitive responses to people living with HIV, and to those in key populations, has had and continues to have on prevention efforts and on reducing HIV-related stigma and discrimination. They could not, I think, have done more. 

Yet punitive responses remain – a stubborn stain that refuse to be shifted (except for a few notable exceptions). Why is this so? Why, in an era in which effective treatment (where it is accessible and available) means that people living with HIV with an early diagnosis have a similar life expectancy to those without HIV, should people be so afraid of infection that they want to punish and imprison? And why is this even more apparent in countries where that treatment is indeed accessible and available (North America, Australasia and Europe)? It seems to me that the answer lies in an increasingly obsessive focus on the value of security and in a perversion of that value during the last twenty years.

There was a time when we accepted that our bodies were fragile, porous, weak – open to disease and infection. To be human was to be a much more vulnerable organism, more susceptible during accidents, childbirth, and illness. As biological, medical, and pharmaceutical sciences have developed, as we have come increasingly to believe that we are able to regulate, manage and master the pathological agents that threaten our physiological integrity. 

It is thus completely explicable that HIV – despite being a manageable, if serious, chronic illness – should be stigmatized to the point of criminalization. Explicable because it is a reminder – an embodied reminder – that we are mortal; that the fantasy we entertain about our bodies is merely that – a fantasy.  Any threat to this – including the person who fails to let us know that they are a potential source of infection, and the person whose virus might (but doesn’t) escape – is, quite literally, intolerable. 

HIV is an environmental fact. It coexists with humans. The humans in whom it is embodied suffer criminalization, stigma, and discrimination not because of HIV itself – it’s a virus (!) – but because HIV confounds us, challenges us, frightens us, forces us to acknowledge what being human really means. And these negative effects of HIV can, and will, only be eradicated (for as long as there is neither vaccine nor cure) if we learn from the experience and practice of those who have organized so hard to counter them: if we (re)learn the value of, and progressive political opportunities that come from, working together and with a certain degree of humility in the face of nature. 

If there is one legacy from HIV that we might wish to remember, I hope that it is the reaffirmation of what can be achieved – for ourselves and for others – through a politics that acknowledges the value of community rather than one that thrives on the fear of difference.

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HIV Update: Rights in Action

By Kevin Osborne (IPPF)

Since the beginning of the epidemic, HIV has been at the crossroads of science, rights and moral values. All too often human-rights, tolerance, and acceptance are seen as ‘nice-to-haves’ but not ‘must haves’ as part of national and international responses to HIV. Yet studies have shown that failure to respect human rights undermines the return on investment. There is a financial as well as moral imperative to ensure that the efforts, attention and hard-earned currency invested in responding to HIV are as effective as possible.

There is an unconscionable economic, human and social cost of inaction on human rights. In my home country South Africa, a study by the Harvard School of Public Health found that the political inaction during the AIDS denialism of Thabo Mbeki’s government equated to 365,000 premature deaths. This included 330,000 South Africans who died for lack of treatment and the 35,000 babies who perished because of ineffective, incomplete or absent efforts to prevent the transmission of HIV from their mothers. In total, the economists found this was at least 3.8 million years of life, lost.

On a global scale, a recent study has also quantified the cost of inaction. A new investment framework incorporates major efficiency gains through community mobilisation, synergies between programme elements, and benefits of the extension of antiretroviral therapy for the prevention of HIV transmission.  The framework differentiates between (i) basic programme activities that aim to directly reduce HIV transmission, morbidity, and mortality; (ii) activities that are necessary to support the effectiveness and efficiency of these programmes (critical enablers); and (iii) investments in other sectors that can have a positive effect on HIV outcomes (synergies with development sectors). Human rights, tolerance and social inclusion are core principles at the heart of creating such an enabling environment. Scaling up and implementing   the new investment framework, would avert 12.2 million new HIV infections and 7.4 million deaths from AIDS between 2011 and 2020 compared with continuation of present approaches.

The significance of human rights in the response to HIV has been integral from the very beginning. Due to the link between HIV and traditionally sensitive issues, the epidemic has brought into the open differing values and attitudes related to human sexuality and behaviour. As the spotlight shines away from HIV and specific sources of funding are opened up to incorporate other diseases and health systems strengthening, there is a risk that addressing these rights could falter. With an ever-increasing focus on numbers and scales (which are both important) it is imperative that rights – which are often difficult to quantify – are not jeopardized, forgotten, or simply taken for granted.

For IPPF, putting rights into action by upholding the sexual rights of all and addressing HIV-related stigma are key priorities for our work. Practical measures such as ensuring that our workplace is a stigma-free environment and providing stigma-free services in all of our clinics, go a long way in maintaining a rights-based approach in everything we do.

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