Invisible: Do sick people with no money need to become rich before we see that we can keep them alive?

Clearly, not everybody can be saved - the ideal society is not of this world. But how many more could be, with even a modicum of political will? This is the crux of the matter. This is the question we put to doctors, the pharmaceutical industry and, especially, politicians.
Outside of armed conflict, victims sacrificed to the creation of the political order - local, national or international - are often hidden from the sight of ordinary people. Blatant violence is suited to the conquest and defense of power. Its use on a daily basis, however, is more likely to cover up its deadly character. For those condemned in this daily fashion, the sentence does not take the spectacular shape of violent death; rather it comes in a guise so perfectly integrated into the social landscape as to become invisible - that of extinction through deprivation of the very necessities of life (water, food, energy, medical care and shelter). Far from denying the existence of these victims, their proponents explain them away by saying that "you can't make an omelette without breaking eggs." In the end, the logic of a recipe serves to justify the untimely disappearance of part of humanity. Skin color, religious belief or political affiliation may lead to execution along the side of a road in a country at war. But for our hidden victims, the essential does not reside in such overt stigma that enable a society to distinguish those who can live from those who might - or must - die. For the majority of the inhabitants of our planet, survival depends instead on whether they can get treatment for infectious diseases. Clearly, not everybody can be saved - the ideal society is not of this world. But how many more could be, with even a modicum of political will? This is the crux of the matter. This is the question we put to doctors, the pharmaceutical industry and, especially, politicians. According to estimates by the World Health Organization (WHO), 3 million people die of AIDS each year, while about 300,000 are victims of war. In other words, AIDS kills ten times as many people as war. And AIDS-related deaths are only a fraction of yearly deaths due to the most lethal infectious diseases, nearly 15 million deaths in 2001, according to the WHO's The World Health Report 2002. Many of these are deaths from diseases which have either preventive (vaccines) or curative (antimicrobial) treatments. The very first treatments capable of prolonging the lives of patients whose immune systems were compromised by the AIDS virus, even those who were at death's door, appeared in the mid-1990s. In 2000, the price of these drugs ran to several thousand dollars a year per patient, thus making them inaccessible to the majority of AIDS sufferers. The reason behind this high price was not due to especially high production costs; indeed, under pressure from lobbying campaigns, the price of these vital medicines has been divided by 30 in the space of two years, without in any way pushing the pharmaceutical sector to the brink of bankruptcy. If treatments exist, why aren't they being used? Why has so little international attention been devoted, until recently that is, to the survival of millions of people? Driven into a corner by the dedicated campaigning of patient and caregiver organizations, Andrew Natsios, head of the US Agency for International Development, responded with a diatribe worthy of Gobineau, the 19th century advocate of European racial supremacy. Africans, he said, "don't know what Western time is. You have to take these (AIDS) drugs a certain number of hours each day, or they don't work. Many people in Africa have never seen a clock or a watch their entire lives. And if you say, one o'clock in the afternoon, they do not know what you are talking about." (Boston Globe June 7, 2001). This explanation merely serves to evade the question of the continued high price of treatments, and thus panders to the short-term interests of the pharmaceutical industry. The effects of generic competition and the increase in the volume of drugs produced and sold have already had on prices show us that the price of drugs could soon be less than US$100 per year per patient. The case of Brazil, where the government put into place a policy providing ARV treatment to all people who need it, has taught us that it is possible to treat large numbers of people without bringing the national economy into ruin. Why is South Africa, which is one of the most affected areas on the continent, so slowly committing itself to this line, while its economy is one of the strongest in Africa? The South African leaders' inertia, criticized by Nelson Mandela, has become so blatant that it can no longer be concealed by arguments about making the fight against poverty a priority. The weak response by politicians to the HIV/AIDS pandemic becomes tragic farce when US President George W. Bush announces that his country will, over the next five years, pump several billion dollars into programs aimed at promoting sexual abstinence in Africa. In terms of analyzing the responsibility for the destruction of human life, how can we distinguish the bombing of a civilian population during a conflict from the withholding of effective medicines to combat a pandemic that has already swallowed up 25 million human beings (or the promotion of ineffective medicines, as is the case for malaria, another treatable disease which itself claims 1-2 million lives each year)? Bloodshed has for a long time seemed to distinguish war from all other forms of social relations. However, is this a reason valid enough to isolate war as a separate social field to which humanitarian organizations should restrict themselves in accordance with the rights granted to them for this specific context by international law? To our mind, no. A distinction between war and peace predicated solely on the use or non-use of violence is radically transformed when we see the ultimate effects of, on the one hand, spectacular violence, and, on the other, denial of care for people deemed too poor or uncivilized to be treated. In both cases, deaths result, due to deliberate action - or to deliberate inaction. From the point of view of saving human lives, the analogy between a war and a health catastrophe becomes clear when, during epidemics or endemics, a realistic treatment exists but is not being used. This is largely what happens in the field of infectious diseases, which have, in the course of history (and despite the incredible scientific and technical progress of the last century), been responsible for most deaths worldwide. In this case, the work of humanitarian organizations is to show the hidden deadliness of the current order and to show, through actions, that there are scientific, technical and economic ways to limit the number of deaths claimed by the great epidemics and endemics. It is the work of the humanitarian organization to show that the key ingredient that is lacking is political will. If we refuse to resign ourselves to seeing our patients die (along with the type of medicine we are practicing in the tropics) we need to understand another essential condition - medical innovation. In order to fully grasp its relevance, it is important to understand the reality of practicing medicine in our contexts of intervention. Africa is a good example in this regard: 65% of deaths are due to infectious diseases (WHO 2002), with nearly two-thirds resulting from three pathologies: HIV/AIDS, malaria and tuberculosis. For tuberculosis and malaria, there are curative treatments available; for AIDS, there are treatments that can stop the progression of the disease. If treated correctly, the majority of patients suffering from these three diseases would survive. Obviously, it is clear that for this to happen we must have effective drugs at affordable prices. But we must also be able to use them correctly. While the physical effects of viruses, parasites and bacteria on organisms are quite similar in all corners of the world, individual people have greatly differing lifestyles. And the aim is, of course, to treat sick people. There is a big difference between an African farmer whose immune system is compromised as a result of HIV and who is unable to pay for a bus fare to go to the dispensary (the initial stage in a multitude of obstacles to be negotiated in order to survive), and a European worker who continues to receive his salary during his illness, and whose health insurance covers 100% of all medical expenses, with a hospital bus coming to pick him up at home. The medicine we practice cannot offer the same level of care in both cases, even if, in an ideal world, this is imposed by a hypothetical universal medical ethic. The resources available and the living conditions are not the same. But do we have to wait for sick people with meagre incomes to become rich in order to start thinking about keeping them alive? With the exception of vaccination campaigns, current public health policy recommends that Africans, while they are waiting to "be developed," live under a mosquito net, genitals wrapped in latex, waiting to be asked (perhaps tomorrow) to wear a mask in order to avoid pulmonary infections. In reality, so-called preventive policies, reduced to sad rituals as a result of budgets that are vastly inadequate to cope with existing needs, are replacing any real response to the millions of deaths each year due to infectious diseases in Africa. Medicine is reduced to asking sick people to become rich in order to get medical care, or at least to avoid becoming ill if they can. To do this, they are advised to isolate themselves from the world by living behind a screen - the latex of the condom and the nylon of the mosquito net. It is this logic that we reject when we express the ambition to have rates of cure for our patients that are similar to those of sick people in rich countries, in spite of sub-optimal conditions. At the same time, the way to achieve this goal is not described in any manual. In order for anyone to claim to be an expert at this kind of practice it should first be practiced widely. Lest "the medicine of the poor" be reduced to poor medicine, we have to work to invent other medical practices, adapted to the cultures of our patients and their ways of life. Our teams, who take care of HIV/AIDS-infected patients in Africa and who, through the use of tri-therapies, obtain results that are comparable to those of European doctors, are leading the way. Let us hope that tomorrow we can transform these initial trials by exploring the possibility that our patients might be the first to benefit from new protocols that are in the offing: fusion inhibitors, "intermittent" treatments and therapeutic vaccines. These new therapeutic tools could enable us to treat patients whose virus becomes resistant to primary treatment and to relieve some of the heavy burden of daily doses for the follow-up treatments by patients and doctors. These are indispensable stages in order to increase the number of sick people treated, even as nearly six million HIV-positive patients around the world are awaiting treatment that can save their lives. The medical humanitarian effort, as we see it, is intended to question the logic that justifies the premature death of part of humankind. "Are some of these deaths avoidable?" is the question we repeatedly pose to the powers that be. Why? Because we have committed ourselves to attempting to care for those that society has chosen to forget. To put it another way, humanitarian aid must as a priority reach individuals whose lives have been stolen by violence, yes, but also those whose lives are threatened by the daily deprivation of vital health care. The subversive nature of this work is revealed when it goes beyond mere analysis of material needs to lay bare the discriminatory policies that cause exclusion from care and hinder effective aid. If the humanitarian effort is to be true to its mission, it must fly in the face of the established order. It is successful when, venturing off the beaten path, it takes the risk of creating innovative medical care out of the intuition of those who are committed to saving human lives.