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Don’t Brexit on rare disease patients – The case of primary immunodeficiencies

31 January 2017

On Tuesday 24th January 2017, Health First Europe attended the 8th PID FORUM organised by the International Patient Organisation for Primary Immunodeficiencies (IPOPI) in the European Parliament to discuss the impact of Brexit on patients affected by rare diseases in both the EU and UK.

As highlighted by MEP Seb Dance (S&D, UK) in his introductory notes, Brexit symbolises the withdrawal of a key Member States in Europe that has and will have inevitable impact in many areas, especially in the healthcare sector. Over time, ‘the United Kingdom has developed an advanced level of medical research which has made positively outcomes for patients and job seekers. This does not have to be lost in two years of negotiations’, pointed out MEP Dance. On the contrary, networks are important and need to be strengthened among EU Member States, sharing new recommendations and practices.

In line with this, MEP Zorrinho (S&D, Portugal) declared that it is the right time to reinforce connections across Europe, dealing with citizens’ rights and being aware of correct priorities to guarantee the best assessment of treatment and care.

Mr Johan Prevot, Executive Director at IPOPI, shared a comprehensive presentation on what primary immunodefinciencies are and how the European Union supports them, favouring mobility and supporting developments of rare diseases’ plans. IPOPI is highly committed to raise awareness on this matter and influence the reality after Brexit. In this regard, a new set of recommendations both in the UK and EU will be developed and launched soon to support future discussions and ensure that PID care does not suffer from the Brexit.

Dr Siobhan Burns, Reader and Consultant in Immunology, presented his work at the University College London Centre for Immunodeficiency where multicenter trials are conducted for gene therapy for PIDs. Gene therapy has been supported by EU funding for the past 15 years. Here comes the need to keep the focus and ensure the UK participation in the H2020 Framework Programme. According to the British perspective, the challenges of Brexit are numerous, such as the access to clinical trials for patients, the disruption to current academic collaborations and networks, the lost opportunities for training doctors and the impact on recruitment for patients. Furthermore, the level of uncertainty, the increase of medication costs and employment difficulties for EU nationals are additional political challenges that may result from Brexit, as stated by Ms Sarita Workman, specialist sister in Immunologic Research at the Royal Free Hospital.

For all these aforementioned reasons, health care agreements need to be maintained to ensure the best quality of care for patients. More investment in cross-border healthcare along with more cooperation and sharing of best practices are key elements to strengthen the collaboration between health practitioners and policymakers. As underlined by Ms Susana Lopes da Silva, doctor at the Hospital Lusíadas in Lisboa, education and networking are crucial elements to maintain the bonds with the UK for the best interest of patients.

While it is clear that ‘Brexit will lead to market and currency fluctuations and will have an impact on patient community’, as stated Ms Amanda Box, CEO at the European Haemophilia Consortium (EHC), it is time to reinforce solidarity and community in shaping the upcoming agenda on Primary Immunodeficiencies at EU level. In this frame, as a basis for further Brexit discussions and future negotiations, new recommendations will be developed, sent to several MEPs and shared with different interested parties.

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