Thank you for asking why. Whys are the best way to initiate important ideas and movements- because they require us to start by thinking.
So here is why: Because some of the leading causes of death in our countries have no proper treatment. We are not talking of a distant disease in Africa, we are talking of what is going on here, around your corner, affecting you, or your family. But we know how to fix it. Whilst diseases devastate our lives and the lives of our beloved ones, we are facing every day a massive loss of opportunities to solve them. The solution involves you, us. And for the first time there is a way for us members of the public, you, to act hands-on.
I have no doubt this statement sounds disruptive and not very credible. But it is actually accessisble enough for anybody to understand what we propose and see the opportunity. So with no further ado, let me plunge in the subject matter and show you the way.
Leading causes of death in our countries don't have a proper treatment
While we know how to treat ischemic heart disease, some cases of lung cancer, and pneumonia, we did see a massive decrease in their associated mortality. So did mortality with breast cancer and blood cancers. Surely, they remain massive killers and there is still work to do.
We all know that some diseases don't have a cure. But what seems to be missing from the public awareness and debate is that, we have no treatment at all, for what is no less than the leading cause of death in the UK since 2016, and also the number 4, while the 3rd has an effective treatment for which only 10% of patients are eligible. We tend to believe this is a "developing countries" problem or in rare diseases.
I have just described the status for respectively dementia, chronic bronchitis and stroke.
Uneven distribution of resources in publically-funded medical research
The next step is to explore the origin of this lack of solutions. When comparing the research activity in different diseases, it appears that sometimes it can be significantly lower in diseases with high mortality compared with diseases causing less mortality and/or having a known cure.
We used information on research activity and budgets in the 10 leading causes of death in the UK (2016). We used the budget of the US-based NIH (National Institute of Health) from 2014 to 2017 while the research activity was collected on the clinicaltrials.gov database, a registration that is mandatory for research aiming to be published in peer-reviewed journals. So the latter reflects global activity and not just US-funded. This means that the 2 columns are like pears and apples but at this point in time, it is extremely difficult to find proper information of countries budgets for research per disease category.
With this in mind, we looked on clinical trials that were just starting or started very recently, and we focused on non-industry projects, whatever the country (clinicaltrials.gov keywords searching for each disease: projects recruiting or not yet recruiting with all sponsors except industry, early phase 1, phase 1, 2, 3 and not applicable).
A good example is dementia, leading cause of death in the UK since 2016. Until recently budgets for research into "senile decay" were extremely low. The UK government allocated the first special budgets to catch up on years of delay only when the threat to the economy had become extremely clear and the disease was expected to make the headlines as the leading cause of death.