Brexit and Brain Tumours: patient advocates and rare disease experts urge clarity on future of cross-border healthcare

By 1st May 2018 July 16th, 2018 News archive
[1st May 2018] On the 29th March 2019, the United Kingdom is to leave the European Union (EU), which will see the UK no longer being under the jurisdiction of EU regulations. There has been widespread concern among brain tumour and rare cancer organisations about how ‘Brexit’ might affect research funding and cross border access to treatment, care and support for people with brain tumours and other cancers.

Organisations representing people affected by a brain tumour and representatives of an EU-wide network for rare and complex diseases have now called upon the UK and EU Governments to clarify their intentions on the status of European Reference Networks (ERNs) in the UK after Brexit. The ERNs operate on the principle of open, cross-border healthcare and connect existing centres of excellence virtually to establish world-leading and sustainable networks of collaborating, multidisciplinary, research-intensive clinical centres. The ERNs are made up of 900 highly specialised healthcare units located in 313 hospitals in 25 EU member states. Seventy per cent of healthcare providers in the ERNs come from France, Italy, Germany, the Netherlands and the UK.  There is currently no guarantee that UK centres will be able to continue to participate in the initiative after Brexit, because ERNS are supported by the European Commission and only centres within the EU and EEA (European Economic Area) are able to join, meaning that UK patients could miss out on the benefit of collective action and improved care.

Both EURACAN (the European Reference Network for rare adult solid tumours) and “Domain 10”, which is the ERN subgroup for brain and central nervous system (CNS) tumours, have made official statements asking the UK and EU Governments to clarify their intentions on the status of European Reference Networks in the UK post-Brexit, and what progress has been made in relation to this specifically since the publication of the “Collaboration on science and innovation: a future partnership paper” in September 2017.

In their statement, Domain 10 says: “Patients, knowledge, expertise and capacity are dispersed across Europe. In reality, it is difficult, if not impossible, to make any real progress in research in this area as a single country. The engagement of sufficient cohorts of both brain tumour researchers and widely-scattered patient populations, such as those with a specific, very rare type of brain tumour, requires collaboration. Consequently, pan-European co-operation and collaboration is now inherent in the field of brain tumours as a result of open borders.

“Patients’ cross border access to treatment is central to EURACAN. Patients physically cross borders to access healthcare in a limited number of cases and it is envisioned that, in practice, under the EURACAN umbrella, patients’ data will travel instead of the need for them physically to do so. But the uninterrupted exchange of information and data is crucial to the treatment of patients with rare cancers like a brain tumour. An example of where EURACAN adds value is the secure sharing of patient data between healthcare professionals through the Clinical Patient Management System (CPMS). The CPMS can enable clinicians to provide a second opinion or seek suggestions for treatment protocols where relevant expertise does not exist within their own country or contacts.”

Both the EURACAN and Domain 10 statements - which are supported by the International Brain Tumour Alliance (IBTA), The Brain Tumour Charity, Brain Tumour Research, brainstrust, Brain Tumour Action, Brain Tumour Support, and Brain Tumour Research and Support Across Yorkshire - highlight that brain tumours are not just one disease (there are over 150 different types) and affect people of any age, from tiny babies to the elderly in any geographic locality.

The brain tumour charities, together with EURACAN and Domain 10 state: “…brain tumours remain one of the least well-understood and one of the most intransigent cancers. Tragically, around 60% of people diagnosed with a brain tumour will die within one year.”

The group concludes: “For the sake of brain tumour patients in the UK and Europe now and in the future, we urge the UK Government and EU Member States to provide clarity and commitment that the European Reference Networks such as EURACAN and Domain 10 will be able to operate as designed following BREXIT.”

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