Narrowing the gap between luck and judgement in health

Opinion by European Alliance for Personalised Medicine (EAPM) Executive Director Denis Horgan

Currently in the news is a study suggesting that two-thirds of all cancers can be put down to ‘bad luck’ with randomly mutating stem cells the cause, rather than individual lifestyle choices or a lack of efforts at prevention.

The US researchers went so far as to say that even a focus on lifestyle and prevention would not stop the majority of cancers from developing,  While this is true, and hardly ‘news’, really, the fact remains that full DNA sequencing, in line with the principles of personalised medicine (PM), will very often flag up a propensity towards developing a certain type, or types, of cancer, before illness occurs. 

Also, once a cancer has developed, the same process will allow a patient to receive the right treatment at the right time, possibly catching and dealing with the cancer at an early stage and certainly improving the odds of a better patient outcome and quality of life. 

The results of the study, published in the journal Science, showed that, indeed, all cancer has an element of chance but what it doesn’t show is that; on top of this, often the chance of being diagnosed and given the best treatment at an early stage is down to the roll of a dice – or ‘bad luck’ – too. 

The study added that more resources should be focused upon finding ways to detect cancers at early, curable stages. This is something that the European Alliance for Personalised Medicine – EAPM – fully agrees with but, with the barriers to access when it comes to personalised medicine being many and varied, achieving this can be difficult. 

And this is where more ‘bad luck’ comes in – bad luck that could be financial, geographical, a lack of access to new drugs or simply down to the knowledge of available treatments on the part of particular doctors, for example.  Some doctors are not fully aware of PM’s potential and its current application, which strongly suggests that up-to-the-minute and continuous training for health care workers is urgently required.  And in the age of Big Data, legislation should take into account the specifics of PM and create an infrastructure in which genetic information is available in a regulated context. Assuming that satisfactory ethical and workable legislation is put in place; information then has to be collected, disseminated and understood. There is a huge education gap when it comes to PM, even among some doctors, nurses and patients. 

Meanwhile, Europe’s patients must be more involved in every aspect of their own health - from clinical trial remodelling to legislation and all other issues that affect them.  On a broader note, PM needs to be regulated centrally to ensure its safe and effective use. Regulations need to be robust and consistent while being flexible enough to adapt to a fast-moving field. 

When it comes to cross-border treatment, where a country cannot or will not give a patient the best treatment available in Europe, there is often a price lottery in which, if a patient travels to another, richer member state to be treated, the reimbursement levels back at home may be too low to make such treatment viable. 

Similarly, a patient isolated geographically, or with a rare disease, may not even hear of, let alone be able to get to, clinical trials that could improve, or even save, his or her life. Bad luck, indeed – or a disjointed system that can be, and must be, improved if we are to raise the quality of life for a potential 500 million patients across 28 member states. 

On the ‘good luck’ side, in 2014 the European Medicines Agency recommended the highest number of orphan designated medicines for marketing authorization in any single year. From 82 human-use medicines, 17 focus on a rare disease, giving patients more treatment options. 

Among the goals of EAPM is to ensure that any European patient needing these drugs will have equal and affordable access to them. The situation is improving, slowly, but there is still a long way to go. ‘Luck’ will only take us so far.

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