The social construction of the epidemic disaster

The great German poet Heinrich Heine, in exile in Paris, describes the great desolation and terror of the population in the face of this evil. He reports that " a woman seeing 300 hearses pass in her street in a single afternoon before succumbing herself, the guests at a mid-Lent ball, transported still in their masks and costumes to the Hôtel Dieu, where they give up the ghost, taking on a bluish complexion" (from hypo-volumic shock). Panic rages. Alexandre Dumas, stricken by the disease, drinks ether to cure himself, but also to knock himself out. The great physician Broussais had the Assistance Publique buy 1,000,000 leeches, but the cure was almost worse than the disease. Newspapers describe the rampage, the social disorganization and mock both the ignorance of the origins of the disease and the measures taken to combat it. Daumier's famous engraving shows the abandoned state of the capital.

In 1892, 70 years later, another cholera epidemic struck Hamburg, but in a very different form. From the end of August to the end of September, cholera exploded, causing 1,000 cases and 500 deaths a day. But this time, the reasons were obvious. The Prussian-administered district of Altona drank sand-filtered water and reported no cases, while the rest of the city, an independent city-state, drew its water directly from the Elbe estuary.

The famous bacteriologist Robert Koch, who had discovered vibrio cholerae 10 years earlier, was summoned from Berlin. He recommended systematic disinfection and treatment of all water with sand filters. This was followed by the creation of a port sanitation service, the industrial production of chlorine as a disinfectant, the closure of insalubrious districts and the systematic testing of foodstuffs by specially equipped laboratories. At the same time, the city of Hamburg was given a new, more democratic constitution, as punishment for the carelessness that had prevailed in the wealthy city senate when it came to the duty of providing drinking water supplies. This episode is undoubtedly at the origin of the idea that the epidemiological catastrophe is a product of the pre-industrial era. Sanitized housing, improved drinking water quality, food hygiene and all manner of other technologies were the key to eradicating disease. Epidemics are the anti-progress, the opposite of modernity. But from now on, it will stigmatize.

But let's take a look at cholera, which has not been on our radar for the last 10 years, apart from the recent dramatic episode in Haiti. Vibrio is still rampant in Africa, virtually ignored in news bulletins, and we continue to estimate its impact at between 100 and 200,000 deaths a year, and between 3 and 5 million cases.

The map, taken from a recent issue of the New England Journal of Medicine, gives an idea of the situation, admittedly biased as it is based on regulatory notifications alone: 500,000 cases and 7,800 deaths, but with a good view of the variations in mortality rates. The basic origin of this epidemic, which has become invisible, lies in the fact that 40% of the world's men and women have no access to drinking water.

The emergence of the social construct is therefore subject to negotiation, shifting priorities, changing labels, legitimacies and purposes. Sometimes a disaster remains invisible, because no intervention perspective is attached to it. This is the case with hepatitis C in Egypt.

7% of the population is infected, and if left untreated, the disease can lead to liver cirrhosis or hepatocellular cancer. Following rumors, we finally found the origin of this catastrophe. A mass treatment of bilharzia with antimony, administered with non-sterile equipment and very large needles to easily inject the oily product. Nothing happened for years, except that here and there extraordinary seroprevalence reports appeared. Until the Gulf states asked the many Egyptian migrant workers for HIV and hepatitis C serology certificates. Tens of thousands of migrants, including schoolteachers and teachers, lost their work permits at the same time as they learned that they were suffering from an incurable disease. A considerable stir ensued.

At one point, the Egyptian Minister of Health asked the European Union for help in setting up research and intervention projects. 15 years later, treatment protocols were established for all the different variants of the disease, and over 20 treatment centers were set up across the country, applying a specific plan based on the purchase of low-cost generic drugs. None of this had any impact on the social construction of hepatitis C, which is still seen as a problem for drug addicts.

The example of AIDS is more instructive. In its early days, it was visible only to a fraction of the population it affected - men who have sex with men (MSM) - and this was largely thanks to the justified and salutary activism of advocacy groups. It was their spectacular interventions in the public health debate that made visible a disease that wasn't supposed to exist. But AIDS began its journey through social construction. It quickly became the accessory of a sexually transmitted disease, then a violation of human rights, before showing itself to be the great reaper of men and women in Africa. When its demographic impact was verified in Botswana, a relatively affluent country with a seroprevalence of over 30%, the notion of catastrophe re-emerged, and social representation became associated with terms of urgency and the relief to be provided by treatment. Inevitably, the notion of catastrophe thus constructed signals the failure of prevention south of the Sahara, which nobody wants to talk about any more.

The AIDS virus is still progressing in Europe, and social representation recognizes its modes of transmission, but not necessarily in the communities of drug addicts and the new generation of MSM themselves, where it proliferates.

The collective mobilization of these communities either never existed or rapidly disappeared with access to treatment, even if it was pre-emptive. The shock of AIDS will have lasted 25 years, and its ripple effect will have brought health into the European treaty. Its reality is expressed in the Treaty as associated with the notion of multiple scourges against which we must now protect ourselves.

Ladies and gentlemen, let me now turn to a basic characteristic of the social construction of infectious diseases. They are most often associated not with the notion of injustice and revolting misery, but above all, through rich military terminology, with a notion of threat against which economic and commercial exchanges must above all be protected.

The first major territorial eradication campaign was against yellow fever in the Panama Canal, led by Colonel Gorgas of the U.S. Army. Indeed, any interruption in traffic generates costs, but its very threat and the permanent instrumentalization of the infectious peril has become the very basic argument for protectionism, and has regularly come to support restrictive practices in international trade, as well as liberalization efforts.

For a very long time, plague, yellow fever and cholera were the three major diseases notifiable to the WHO under the old International Health Regulations. However, the relevance of these notifications became very low, if not non-existent, as it was soon noticed that a ship's captain had more economic incentive to rid his ship of rats eating and fouling his cargo than any obligation to the IHR to prevent his ship from spreading plague. The gradual but complete opening-up of the world, the globalization of trade and the capture of the last virgin spaces on our planet have created a new infectious biosphere, and at the same time, a new representation of catastrophe. Emerging diseases are deemed dangerous because they are new in themselves, presenting themselves as biologically elusive with unknown, highly variable genomes, and thus becoming more important by virtue of the fact that they do not fit into the usual categories and escape immediate knowledge.

The usual small list of Ebola, Nipah and SARS, with their associated menagerie of bats and civets, hides several hundred larger micro-organisms that have been identified simply by the existence of new molecular diagnostic techniques. The signal emitted by these entities is not associated with clinical conditions or parameters such as mortality; it's that of the laboratory photometer alone.

September 11, 2001 changed the world by making the unbelievable believable. We came to believe in the possibility of impossible events repeating themselves when anthrax spores of a particular experimental strain, the AMES strain, and originating from US military laboratories because of a particular chemical signature, claim victims among the agents handling mail destined for US legislators. All over the world, hundreds of samples of white powder invaded laboratory anterooms: sugar or flour, salt, plaster, deposited by disproportionately worried citizens.

In response to this irrational fear, the US government created a $50 billion Manhattan-style biotechnology research program. This program was used to develop a whole new generation of integrated molecular diagnostics, which are still struggling to be applied to the most widespread pathogens. Bioterrorism, which has struck a dozen men, is now preventing technological application to millions of malaria or typhoid fever carriers, by absorbing research and development funding and capacity.

Dustin Hoffman was paid more for his role in the film "Outbreak" than the WHO's annual budget for this field of research. These are the anecdotes that will bring health safety into the close circle of the 5 global health metaphors described by Martin McKee and David Stuckler, on a par with public health itself.

The scientific and health paradigms involved in social construction are not only nourished at source by metaphors, they also rapidly succeed and replace one another, and not without violence for the subjects whose interests they claim to represent. The term metaphor allows us to think that these can coexist peacefully. But when we look at the successive paradigms of development policies over the last 60 years, we see that there was a time when underdevelopment was defined as the result of overpopulation, and it was family planning that was to contain all the actions necessary for health. Soon after, it was the turn of malnutrition, first calorie-protein, then micro-nutritional. The vitamin A injunction became a panacea, the universal intervention to cure all ills, until its toxicity was demonstrated and its scope reduced to fair and effective but targeted measures.

The social construction of a universal, technical remedy locks scientific thinking into a small set of preconceived ideas. But these are not derived solely from politicians or the media, but above all from the research community organized according to priorities - territories. These communities resemble gregarious, highly mobile tribes, growing by co-optation and adopting diverse, but necessarily global, denominations: task-force, alliance, partnership, action.

As a result, international conferences on social constructs are transformed into communication exercises, their constructs becoming increasingly autonomous from the facts, as the pressure of communication demands simplicity and didactic rudiment. Health priorities are no longer aligned with needs, but with opportunities defined by a momentary political context. Thus, the novelty of the health security paradigm, to which the WHO devoted its 2007 annual report - and these reports are among the most important health policy documents - is represented by the fact that it has taken shape in its own legislation: the new International Health Regulations IHR, adopted in 2005, which no longer define notifiable diseases but public health events of international importance. This considerable innovation adds the extrapolation of non-events to the social construct, since the proper definition of an event only exists empirically in a global context.

A table showing the evolution of costs associated with epidemiological disasters illustrates the lack of relationship between their true impact in terms of health impact, traditionally measured by mortality, and the ever-increasing costs. It is to be feared that these costs will continue to grow, as long as we lack an instrument that can once again link the constructed with the real. Very often, these figures are shown in order to mobilize preventive spending in proportion to the presumed economic impact of the event, even though they already include some of this spending, which is often disproportionate and not rationally justified

In the case of the H1N1 epidemic in 2009, a very recent study shows that almost everyone - well, a quarter of the world's population - was affected in the space of a few months, without as many people being sick or carrying the virus. In this case, the instrument used to smooth out the estimates is the serological incidence cohort, and the work published months, if not years, later than usual demonstrates the difficulty of developing this instrument in a coordinated fashion.

The biases that social constructs introduce into the setting of priorities are not insignificant. Before 2009, the impact of a new influenza pandemic was estimated at 1,000 billion in terms of costs and 65 million deaths, by extrapolating from the Spanish flu - an extrapolation that was not without its weaknesses and was highly open to criticism. In an atmosphere marked by the financial crisis, the aim was to invest a proportion of these expected costs in technical prevention. The idea of investing in strengthening healthcare systems so that they could implement better prevention and care measures, including the promotion of hand hygiene, was never on the agenda. Epidemiological disaster is therefore only defined in the specific world of OECD countries, where the focus is typically on logistical or material solutions such as stockpiling masks or medicines. Like other elements to be noted, this feature means that international public health has reached the ultimate stage of financialization.

This imprisonment of scientific ideas within the constraints of social construction obviously adds nothing to the effectiveness of medical research.

In 2004, Chalmers and Glasziou, founders and moderators of the Cochrane Collaboration, noted that of the 100 billion invested annually in medical research (resulting in 1 million publications), only 10% goes towards evaluating treatments, which is the closest thing to patients.

As we all know, a new paradigm always brings with it a whole new set of research agendas, with a penchant for basic research, which is certainly magnificent and exciting, but the simplest things are rarely looked at.

This basic research, successively carried out by different constructs, constantly renewed, diluting the targeted effort, involves a kind of increased operational risk. Thus, as a baseline, at least 30%, perhaps 50%, of research efforts result in no publication at all. The absence of a direct link between health needs and social constructs is at the root of one of the major inefficiencies in the research system.

Social construction continues like the Tower of Babel, and its limit is only reached when it stops. It then tends to become valueless.

Let's return to the question of quarantine. International regulations no longer recommend its use. In today's highly interdependent world, closing borders means locking oneself behind a frontier, preventing help from arriving. However, halting air traffic and lowering land and sea barriers are expected, predictable measures that give the impression of immediate, short-term success, for which political decision-makers remain the prime beneficiaries. However, there is a further level of success. In 2009, the Chinese government is described as quarantining travellers from countries where H1N1 is already present. The People's Republic of China was celebrating the ^60th anniversary of its proclamation, and the powers-that-be wanted to give the population the idea that they intended to protect it with every means at their disposal, even if it meant sacrificing important diplomatic and commercial interests - something they had perhaps been slow to contemplate in 2003 during the SARS outbreak.

Social construction is thus reduced to an exclusively political gesture. It derives from the pure expression of power. The social construction of catastrophe breaks out of the once obligatory north-south, rich-poor, technologically equipped or unequipped framework, and reveals itself to represent in essence the government's relationship with its citizens or subjects.

In fact, and this is my conclusion, social construction is an unnecessary logical detour. Very recently, the director of the WHO, Madame Margaret Chan, expressed her dismay that, despite the numerous manuals, workshops and subsidies made available by her organization and others, the IHR is still not applicable on the scale required. Seven years after its adoption by consensus, too many countries still lack almost everything they need to organize their surveillance systems and report events according to standards that can help build the necessary confidence: they lack the equipment, supplies, laboratory resources, communications resources, and above all the teams of experienced epidemiologists to guarantee reliable interaction with third countries. She goes on to point out that 65% of the population lives without a demographic data registry system, and therefore without civil status. So, in this two-thirds post-modern state, no births or deaths will be registered, and no deaths investigated. This figure corresponds to that of the 40% without access to drinking water, thus remaining exposed to cholera and other water-borne diseases: here is a reality without representation, and here is the catastrophe.