In the context of the Alzheimer Europe Congress in Copenhagen, I would like to add my two pennies worth of insights.
Having witnessed how the disease affected my father, how it gradually reduced his his pride and his dignity, and especially in the months before he completely forgot who he was, when consciousness, cognition and memory were still battling with incomprehension, starting with the horror in his eyes when he realised he could no longer remember the names of his grand-children, his aborted willingness to enter into a conversation that could no longer take place, his half-way gestures, his withdrawal into a permanant smile that acted as a mask to cover his isolation, realising his powerlessness and dependency, having witnessed all this gradual decline, this reduction of a proud and successful person into a body without a mind, having witnessed all this, we can only hope that more is done to find treatments against this dirtiest of diseases.
Today, 7.4 million people are affected with the disease in Europe, at an estimated total cost of 160 bln euro, some say even 270 bln euro. These are incredible figures, and they will increase significantly over the next decades if nothing is being done about it, leading to an estimated 18.7 million people suffering from the disease by 2050.
Finding a cure is extremely difficult, because of the complexity of the brain, and because the disease is probably the result of a variety of neurological problems. The pharmaceutical industry has invested significantly in this area because the burden of the disease is so high, and efforts will probably continue at that pace. But because of the complexity of the disease "between 1998 through 2014, 123 potential medicines for Alzheimer’s were halted in clinical trials, while just four medicines were approved" (Source : phrma.org). Today, no less than 77 medicines are still under development, but with such failure rates, even that does not look too promising.
That is why public funding is really needed, together with a more coherent global approach.
At the Member State level, the biggest public funders are the UK, France and Germany with approximately 60 mio euro each. The European Commission has dedicated 143 million euro for the Horizon 2020 programme to neurodegenerative diseases, so that makes 20 million euro per year. It is impossible to find figures from the other member states, and that by itself says a lot. So let's assume the total adds up to 300 mio euro per year roughly for the entire European Union. In the United States, the National Institutes of Health invest US$ 910 mio per year on dementia research, that is three times the European amount. Or 1.1 billion euro a year in research, for a disease which costs 737 billion euro per year across the globe. So we spend 0.15% of the total burden of disease on research. That is an almost criminal figure. It is shocking for patients and their families to see there is such a lack of commitment by the public research authorities to tackle this problem. It is also shocking from a health economic perspective. We have to invest now to avoid complete public budget depletion because of dementia in the coming decades.
Yet the authorities still seem proud of their investments, when they shouldn't.
Second, there needs to be more coherence in the approach. A platform such as the Global Fund to Fight AIDS, Tuberculosis and Malaria is urgently needed, with all countries, philanthropists and industry working together to find solutions. Fledging initiatves exist, such as the Global Alzheimer Platform, or the Global CEO Alzheimer Initiative, but more is needed, much more is needed, and especially by the public funders. The Global CEO Alzheimer Initiative writes about 1% of the total burden of disease that should be allocated to research, or 6 billion dollar per year (they have different figures, apparently). I have no idea what industry invests. That may be several billion euro a year, but it would surprise me if we reached the total of 6 billion euro. It is time for our political leaders to act.