Abstract
3 min read‘Le bon sens est la chose du monde la mieux partagée, car chacun pense en être bien pourvu.’Common sense is the most widely distributed commodity in the world: everyone believes to be well endowed with it.(Discours de la Méthode,René Descartes 1596 –1650) A few years ago, the ISTH initiated World Thrombosis Day. The idea was to enhance knowledge of thrombosis, and particularly venous thrombosis. By making the lay public, physicians and policy makers more familiar with thrombosis, we would improve prevention, diagnosis and treatment, as well as funding for research. Currently, in the research agenda of the European Union, H2020, many disorders are mentioned, but not thrombosis. Many of the diseases that national or regional funding agencies list have been included after awareness campaigns, such as ‘write your senator’ in the USA or meetings in the European Parliament. This led, for instance, to rheumatoid arthritis being specifically mentioned in EU research programs, but not thrombosis, which has an incidence that is 100‐fold higher. Often, groups give presentations in the European Parliament, in small meetings with several stakeholders and one or two interested members of Parliament. This may also include patients’ organizations, which are often well‐organized, and have clear messages of disparities of treatment availability across Europe, but are also often heavily sponsored by the pharmaceutical industry. Campaigns may focus on common diseases, and in that case data are presented mainly on the number of patients and deaths, or on rare disorders, where annual costs of treatment often hover on the border of the reimbursement limits that many governments are forced to apply. Quite understandably, all believe their disease is worthy of the most funding. None of this seems very rational, though. The same holds true for charitable organizations that collect money to, amongst others, sponsor research. Some diseases are more ‘popular’ than others, and related to the size of a field, some groups are better organized than others. There is a vast difference in willingness to donate for childhood malignancy or for epilepsy, to just give an example. While we cannot tell these charitable organizations what to do, let alone donors which one to donate to, we may advocate some rational thought in the public domain. What would be the determinants of a rational rather than emotional system to divide research funds? A reasonable one would be the total gain in high quality years of life as a potential outcome of the research. In young adults, aged 15–30, leading causes of death in Europe and the USA are traffic accidents and suicide (in the USA homicide is also in the top 3). Clearly, the young are those in whom saving a life would yield the greatest gain in years of life. One would therefore expect large amounts of funds to go to psychologic support and psychiatric care for teenagers and adolescents, and to research in this field, while the ironic truth is that in many countries this funding has gone down over the last decades. Obviously, only successful research would lead to health gains, and the greatest successes may follow difficult to predict high‐risk research. Most funding should go to research that is likely to affect the lives of many people, but this should not be disproportional, as seems to be the case with cancer research, or fully irrational, as is the case with diminishing funding for mental health research in adolescents. We will have to accept that predicting success is hard, and even that major improvements in health outcomes have little to do with biomedical research: the epidemics of infectious diseases that killed half of the population in Europe from the middle‐ages until the 19th century disappeared because of increased hygiene and not the invention of antibiotics, and we still do not understand why the incidence of myocardial infarctions has been more than halved since the 1950s. Therefore, a rational system would never be perfect, but arguably better than a system that only follows emotion.
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