# EAPM: Alienarea va contribui numai la problemele pacienților din Europa

There is no denying that many citizens in both Europe and the United States have felt, or still feel, alienated, scrie Alianța Europeană pentru personalizată Medicina (EAPM) Directorul executiv Denis Horgan.

On this side of the Atlantic there has long been a sense that many people across the EU’s current member states fail to see what the European Union does for them (or if they think they do, they don’t actually want it) and feel disconnected.

Over in America, meanwhile, it was clear from the election of Donald Trump that plenty of people Stateside felt cast aside by the political machine and were crying out for change.

Populism has been on the march and, at its core, can arguably be given as the reason for Brexit.

The sociologist Robert Nisbet wrote that alienation is a “state of mind that can find a social order remote, incomprehensible or fraudulent; beyond real hope or desire; inviting apathy, boredom, or even hostility”.

And in a recent opinion piece for New York Times, David Brooks argued that last year’s presidential campaign was “an education in the deep problems facing the country. Angry voters made a few things abundantly clear: that modern democratic capitalism is not working for them; that basic institutions like the family and communities are falling apart…”

Brooks added that: “The alienated long for something that will smash the system or change their situation, but they have no actual plan or any means to deliver it.”

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In the EU, laws are being debated all the time by the Council, Parliament and Commission, that will affect the lives of 500 million citizens across the current 28 member states. Regulations are formulated, Directives created, votes are cast in Brussels and Strasbourg, but the actual people it is being done for the good of are hardly jumping up and down and clapping.

That, of course, is the nature of the beast. But in some areas it cannot really afford to be that way.

Let’s take health, with all it implications for the EU countries: There have been incredible leaps in health care in recent years (not least in genetics), and the rise of personalised, better-targeted  medicine means that more patients are receiving the right treatment at the the right time.

On the other hand, a lot of them are not. Access is uneven, often undemocratic and certainly not equitable when taken across the EU as a whole.

Great EU plans, such as regulation on IVDs, clinical trials and cross-border healthcare are admirable but, in the latter case, not working properly due to a lack of full implementation by some member states as well as problems of reimbursement levels between richer and poorer countries.

Meanwhile, data protection laws have still not come to grips with the fact that health data is vital for research (most patients have realised this, however) while the institutions that collect, process and store health data have yet to fully grasp how best to disseminate it within strict laws surrounding ethics, ownership and permissions.

Our ageing population needs plenty of health care right now, and will need even more in the future as patients suffer from co-morbidities, yet healthcare systems are failing to deliver.

The prices of medicines for rare cancer sufferers, for example, are sky-high and often undelivered, bench-to-beside timelines for new drugs need to come down significantly (without letting safety suffer) and, while all the new health-monitoring gadgets keep pouring from Silicon Valley and elsewhere, many patients are still not getting what they need.

They often do not get information on clinical trials, if they don’t know the correct question to ask then most doctors won’t volunteer certain facts, their lifestyles are often not considered when deciding on treatment and they often have little or no part in the latter process.

Yes, health care is developing and developing fast. But there’s little point to all these new technologies, ideas and gadgets if patients are alienated for one reason or another.

The powers-that-be in Europe are certainly aware of all of the above. In fact, in December 2015, during the Luxembourg Presidency of the EU, the European Council issued its conclusions on personalised medicine for patients, highlighting how “the development of personalised medicine may offer new opportunities for the treatment of patients in the European Union’”.

But the presidency was also aware of issues such as increasing costs, inequitable access across European countries and regions and the need for a relevant ethical, regulatory and reimbursement environment.

Against this backdrop, the European Alliance for Personalised Medicine has been working hard to bring stakeholders together to solve access issues. The Alliance brings together European healthcare experts and patient advocates involved with major chronic diseases with the goal of improving patient and uptake of personalised medicine.

Its consultation base is wide, and it has ongoing dialogue with the likes of the European Commission, European Parliament and the European Medicines Agency.

In a nutshell, somehow Europe has to overcome the barriers in order to deliver the best healthcare possible to all of Europe’s citizens.

The bottom line is that having patients feeling alienated through inequitable access is as bad as them failing to ‘believe’ in political systems.