Le Panoptique

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Universal Access… Now?

Publié le 1 octobre, 2008 | Pas de commentaires
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At this year’s International AIDS Conference in Mexico City, there appears to be a disjuncture between research and reality. Resources are being aimed at ‘our’ AIDS problem, a problem which is rooted in small pockets of the developed world’s population; whereas, ‘their’ AIDS problem is of a different nature altogether – and it forms the bulk of global infections. Recognizing this division and overcoming it will be crucial in the years to come if the AIDS community hopes to pursue truly universal solutions for a truly universal problem.

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Gustavo Pimenta, Sans titre, 2005
Certains droits réservés.

The theme for this month’s issue of The Panoptique is ‘Red,’ and while this means many things to many people, for myself the colour is nothing less than the colour of my research. As a graduate student examining HIV/AIDS policies, the colour is inescapable. It forms a crucial piece of the brand of the movement to fight this disease, it is the colour of the pins, the banners and the ribbons that are so ubiquitous – and it was a colour prominently displayed at the International AIDS Conference held this year in Mexico City.

Lessons Learned: Treatment, Prevention and Academic Capitalism

While the conference’s official slogan was “Universal Access Now,” a call to ensure that all people currently living with HIV/AIDS get access to life-extending therapies, there were several underlying themes that emerged through the discussions and the research on display. One was that treatment and prevention of HIV cannot be seen as separate, but must be tackled together. There are a host of reasons for this, but the most important is the recognition that people with lower viral loads are less likely to infect others. Another prevalent theme was the importance of a human rights based approach to combating HIV/AIDS. For many participants, along with the belief that treatment and prevention are inextricably linked came the argument that a sustainable solution to the AIDS pandemic is not possible without the guarantee of human rights. What is striking about the rights-based approach is that most marginalized groups advocate for it. Indeed, rights-based solutions are touted as being the key to reducing vulnerability along gender lines, amongst Commercial Sex Workers (CSWs), Injection Drug Users (IDUs) and the disabled. If you fix the rights, you fix a large chunk of the problem, at least for high-risk groups.

These two undercurrents – the equation of treatment and prevention, and the need for rights-based approaches – arose out of the academic contributions to the conference. But an equally important lesson can be taken from the make-up of the conference itself. Participants were a hodgepodge of members of NGOs, scientists, academics and activists: and each group jockeyed for attention as they tried to shape the conference’s agenda towards their message (‘academic capitalism,’ as a friend of mine put it). I was shocked at the degree to which groups – groups which clearly have the same objective in mind – attempted to shape the general agenda to fit their own very specific goals.

During Bill Clinton’s presentation, which focused on universal access to treatment and global action to combat the disease, a group of protestors marched in front of the podium and disrupted his speech with their calls for more attention to the plight of homeless people living with HIV/AIDS (PLWH). The conference itself has a long tradition of breaking down hierarchical structures and tolerating protests and free expression during its proceedings, but I must say that I was a little confused that anyone was able to get that close to a former President without being tackled. While I applaud the conference organizer’s commitment to horizontal engagement, I feel that the protestors missed the point. In a room full of people eager to help everyone affected by HIV, they were attempting to use President Clinton’s drawing power to draw attention to their specific cause – which is simply counter-productive: get your message out, but not at the expense of other efforts.

Another example of this agenda shaping came out of the CSWs who were represented at the conference. One of the major issues brought up by sex workers was their objection to the framing of sex work in most countries as a problem primarily of trafficking. Their response was that entering into commercial sex work was a choice, that they were not trafficked and that they were strong, empowered individuals who were quite happy with their career choice. Indeed, for them this was true. Unfortunately, it seems quite a stretch to apply the views of the privileged to those they represent. That empowerment and trafficking are non-issues because the most empowered members of the community entered it willfully seems tautological at best.

What is evident from these two examples is that both the homeless activists and the sex workers are the empowered. Both are representatives of their communities in their home countries. They could afford to travel to Mexico to attend a conference (which wasn’t cheap, I might add), and they represent the elite, empowered members of this group. One must take the demands of those representing these groups with a grain of salt, I fear. Not because their demands are not important – far from it – rather with all the talk of holistic approaches and right-based approaches to handling HIV/AIDS, it seems imperative to start viewing the problem in a broader scope, one that is not as fragmented as the activists make it seem as they compete for limited attention and resources.

Our Pandemic and their Pandemic

Tragically this is destined not to happen if major changes in the international response to HIV/AIDS are not implemented; in particular, it needs to be recognized that ‘our’ HIV pandemic is much different than ‘theirs.’ This is crucial. By ‘our’ I mean those of us who were able to attend the XVII Annual International AIDS Conference. The students, the academics, the activists, the PLWH in the developed world – in short, the privileged. By ‘their’ I mean those excluded – the people represented by the activists, the people studied by the students and academics, PLWH in the developing world. Nowhere is the importance of this more clear than in the disjuncture between the global HIV pandemic and the representation at the International AIDS conference. To put it in perspective, South Africa currently has HIV-prevalence rates that top 21% which places an estimated 5.3 million people into the infected bracket (1). In such a situation, everyone in the society is at high risk of infection, regardless of other factors. Contrast this with the United States, where overall prevalence rates are at 0.6% and where it is widely recognized that the highest risk groups are men who have sex with men, commercial sex workers and injection drug users – not heterosexual women as is the case in most African nations. In the developed world, we focus on harm reduction and targeting of specific high-risk groups to limit the spread of HIV. But this model, while effective within these groups, will have little impact on those in the developing world who are at risk because they are the social norm, not because they fall outside of it.

So why is it that if Africa in particular houses 68% of global HIV cases (2), the International AIDS Conference had by my count ten major discussions on MSM (including the Jonathan Mann Memorial Lecture), IDUs, CSWs and other ‘vulnerable populations’ – in short the problems that are facing the developed world – and only one major discussion on Africa, whose entire population is vulnerable? It should be noted as well that the African discussion was the regional session, a session which every region has by default. The discrepancy seemed to lean the same way in terms of participants as well. From my (non-scientific) observations, the vast majority of participants to the conference were from the developed world, and the organizations which were represented were skewed heavily towards at-risk populations in the developed world.

To be sure, the emphasis on prevention and rights, as well as the stated motto of ‘Universal Action Now,’ are positive contributions to combating this disease. But they are also limited by context, and they are clearly the product of the participants who engage in this dialogue – the representatives of vulnerable communities, the elites, those who engage with ‘our’ HIV problem. Unfortunately, ‘our’ solutions are not necessarily ‘theirs.’

A commitment to universal access works well in countries with health bureaucracies, money, and stable political structures (though not always, as South Africa demonstrates). Not so in countries racked by war, facing uncontrollable inflation, or where electricity to refrigerate drugs and the expertise to properly distribute and administer them is scarce. Such a commitment requires a supportive environment, one which unfortunately does not exist where it is often most needed. Equating treatment with prevention works only where treatment is a viable option. If international research on HIV/AIDS focuses for the next few years on this view, without addressing the problem of treatment in regions not amenable to bio-medical treatment options, then the developing world will be not one bit better off – even if the research shows that treatment is the best prevention method.

The same is true of a commitment to rights. Rights are not merely social – they are also economic, and fall prey to the same problems just mentioned. Women, minorities and other marginalized groups can be granted legal rights, but rights are not empowerment. Empowerment requires the ability to act independently, and this cannot be done without providing marginalized groups with other forms of independence, most notably economic. Regardless of the degree of protection of human rights on paper, if a mother cannot feed her family, she is automatically in a position where higher-risk of HIV-infection is more likely.

Importantly, the major breakthroughs and hopes for handling the ‘global’ epidemic are more appropriate for the developed world than the developing; they are more apt for ‘our’ problem than for ‘theirs’. And this is a serious problem if we truly wish to address this as the global issue that it is. Not only is the research focused on the wrong areas, but we have inadvertently imposed a hierarchy on the various epidemics and on the victims themselves. We have prioritized the plight of the vulnerable populations in the developed world at the expense of the vulnerable population of the developing world – and through no intention or design – merely through the day-to-day operation of the movement. This is no excuse. The recognition that our best way of coming together as a community to address the epidemic is flawed is impetus enough to do something about it. We have already recognized that treatment and prevention must be handled as the same thing. The time has come to recognize that ‘their’ pandemic is ‘ours’ as well, that the only true way to address this global issue is to treat it as one.

Special thanks to Beth Sully for pointing out the attempts of CSW to shape the agenda in such a unique way.

References

(1) « World Factbook: South Africa. » CIA. 28 January 2007. https://www.cia.gov/library/publications/the-world-factbook/geos/sf.html. Accessed on 6 September, 2008.
(2) « HIV/AIDS Regional Update: Africa. » The World Bank. 2008. http://web.worldbank.org/WBSITE/EXTERNAL/COUNTRIES/AFRICAEXT/EXTAFRHEANUTPOP/
EXTAFRREGTOPHIVAIDS/0,,contentMDK:20415756~menuPK:1830800~pagePK:34004173~piPK:34003707~
theSitePK:717148,00.html Accessed on 6 September, 2008.

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