Why?

Dear visitor,

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.

Leading causes of death in England & Wales in decreasing order of mortality, and mortality in 2016

No known cure

Cure can be used in limited circumstances

The cure is effective only in some patients

Mortality 
2016
England & Wales

Dementia & Alzheimer Disease

Ischaemic heart diseases

Cerebrovascular disease (stroke)

Chronic bronchitis

Lung cancer

62,948

57,777

32,627

31,384

30,570

1

2

3

4

5

103

117

147

42

504

10,974

8246

2357

401

1286

Influenza and pneumonia

Accidents

Blood cancers

Prostate cancer

Breast cancer

27,504

14,048

11,796

10,456

10,250

6

7

8

9

10

75

289

577

318

594

1994

 

 

1034

2701

Sum of all budgets labelled dementia and Alzheimer
Cardiovascular
Cerebrovascular & Stroke labels
Pneumonia and Pneumonia & Influnza labels
No corresponding labels

Another example is stroke. It is is the 3rd cause of death in England and Wales but only 10% of hospital admissions for stroke in the UK would be eligible for the only effective treatment, thrombolysis. Chronic bronchitis, has the smallest number of research projects starting up with no less than 31,384 deaths in the UK and number 4 cause of death in the US .with 154,596 victims in 2016.

As we can see, the numbers can be quite different from one disease to the other. What we should see, is research activity and budget are not always in line with the burden and mortality of each disease and wonder if this is the most effective management of publically-funded medical research.

 

While this question is hard to answer and certainly involves many various considerations, such as what are the priorities of the public, is the age of the victims important, I recently read in the press a discussion on the R&D budgets of significant corporations. Again, these are pears and apples but knowing that Alphabet research and development yearly budget is $16.6B &, Samsung Electronics $14.9B and Volkswagen $14.8B, makes public funding budgets in medical research very small, for a huge task. Even adding the EU funding for medical research, UK (£2B), Australia ($812M). Taking in account the challenge and complexity of solving stroke or dementia, what budget would we need if VW uses a $14.8B yearly for R&D? But this is of course reflected in the output, which is extremely poor in solving stroke and even poorer in solving dementia whilst VW R&D delivers every year numerous new products.

 

Some will wonder and rightly so why I didn't add to these budgets the pharmaceutical industry budgets. For 3 reasons. The first is that companies usually don't publish their budget per disease category. Second, because talking of leading causes of death affecting us and our families, should we discuss the business decisions of the pharmaceutical industry or the management of our taxes? Finally because other sources of information than those I used are less systematic. For example, an analysis of UK health research in 2015 reported that government and charity money allocated to stroke research in 2014 in the UK was £29M, £34M for all respiratory diseases (chronic bronchitis being a part thereof), and £194M for all the neurological diseases (except stroke but including dementia). It is noteworthy that in the UK the organisations members of the Association of Medical Research spent in 2016 £1.6B on medical research.