The EU’s Cross-border healthcare directive and you – an Alpha-1 patient’s chance for a better life

Published on November 29th, 2021

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Cross-border healthcare in the European Union – what’s it all about?

Every patient suffering from a rare disease is painfully familiar with the struggle of getting access to adequate care. For some, like Alpha-1 patients, the struggle begins at an even earlier stage, with troubles related to receiving a proper diagnosis. Should you even manage to successfully reach this milestone, however, the treatment troubles begin, as not all clinics or countries are equipped to deal with every problem.

That is where the EU’s Cross-border healthcare directive (CBHD) comes into play. Its main goal is to provide citizens of the European Union the chance to benefit from healthcare opportunities in different member states.

It first came into force in 2013 by setting out the conditions under which citizens can travel to other EU countries in order to receive medical treatment and adequate reimbursement. The directive also allows for the costs of healthcare, prescriptions, and medicine delivery to be covered, thus sparing citizens costly fees.

Furthermore, the CBHD encouraged the development of the vital European Reference Networks (ERNs) of medical expertise which allow for the broadening of cooperation between member states by adding substantial benefits for citizens in the fields of health technology assessment and e-health.

The ERNs and Alpha-1 – the pathway to improved healthcare services

The Networks are crucial for the provision and development of treatments for all patients suffering from rare diseases. Through them, doctors and healthcare providers have the opportunity to easily exchange information and discuss complex issues that require sophisticated treatments or highly specialized knowledge – thus ultimately providing better results to their patients.

For Alpha-1 patients, the most important Networks are the ones monitoring lung and liver diseases – aptly named ERN LUNG and ERN RARE-LIVER. It is through them that patients can truly achieve meaningful change when it comes to the early detection of Alpha-1 and its treatment.

Challenges for cross-border healthcare and its future

If this is the first time that you’re hearing about cross-border healthcare opportunities in the EU then you might have guessed what the main challenge for the CBHD is.

The Directive established a network of National Contact Points that allowed healthcare providers to freely disseminate accurate and concise information about the opportunities abroad – but that hasn’t gone according to plan. So far, only a minuscule number of EU citizens have taken advantage of cross-border healthcare opportunities and the CBHD has reached only a fraction of its target audience.

That is where you come in.

Having been in effect for nearly 10 years, the CBHD is currently undergoing an evaluation and assessment. EU officials are looking for input from all manner of stakeholders – but most importantly patients suffering from rare disease.

The Alpha-1 community stands to gain tremendously from improvements to the Cross-border health directive and it can and should aim to make its voice heard. Every voice is invaluable but the voices of Alpha-1 patients can also make use of this opportunity to insist on the expansion of the core group that focuses on their condition as part of the ERN, thus making the condition easier to diagnose and treat in even more member states.

By advocating for a stronger and more robust EU health space, patients suffering from rare diseases can not only expand their options when it comes to seeking treatments but can also live a better and healthier life overall.

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