Published: 14 March 2018

Eleven organisations representing patients across the UK and Europe have warned EU negotiators of the risk of drugs getting stuck at borders, regulatory systems for medicines splintering and potential breakthrough research collaborations being forced to stall.

In a letter to Brexit negotiators Michel Barnier and David Davis, the organisations make a plea to both sides of the negotiations not to forget about patients.

Ahead of the European Council meeting on 22 March where the guidelines for the negotiation of phase 2 will be agreed, the organisations are urging negotiators to consider a set of priorities to ensure there are no negative affects on patients, no matter what deal is achieved. The proposals have been put forward in order to safeguard the interests of patients and make sure that worst-case scenarios don’t happen.

The signatories to the letter, who include the heads of the Association of Medical Research Charities and the European Patients’ Forum, cite the future of European clinical research as being particularly important. For some patients, particularly those with a rare or less common disease, working together across nations is the only way that sufficient expertise and patient numbers can be brought together to progress research. It’s vital that patients across the EU can continue to take part in pioneering clinical trials.   

As the next phase of negotiations start, organisations with patients at the heart of their work have identified four priorities to make sure no patient loses out, no matter what their country of residency:

  1. Achieve close cooperation on medicines regulation to ensure safety and early access to innovative new treatments
  2. Don’t let trade agreements restrict the supply of medicines and medical devices
  3. Make sure patients across the EU can access Europe-wide clinical trials – this type of multi-nation collaboration is key to research
  4. Ensure a smooth transition to deliver changes as seamlessly as possible.

Talking about why organisations across the whole of Europe have got together to take this unprecedented step, Aisling Burnand MBE, Chief Executive of the Association of Medical Research Charities (AMRC) said:

“By working in partnership, the EU and the UK have together achieved many research breakthroughs and developed pioneering systems of medicines regulation that have saved and improved countless lives. As the second phase of Brexit negotiations begins, it is vital that the concerns of patients are addressed with urgency. By taking health care and research into consideration, Brexit negotiators have the opportunity to ensure that no patient, whichever country they live in, faces unnecessary delays in accessing existing as well as new and better treatments. Fishing and aviation have been identified as key areas of consideration ahead of discussions on the UK-EU relationship; we now urge negotiators to work together to make sure patients are front and centre of the second phase of talks.”

Susanne Logstrup, Director of the European Heart Network said:

“I think it is safe to say that neither the almost 49 million people who live with cardiovascular disease in the EU, nor their families and carers, would expect or want Brexit to jeopardise the current cutting-edge collaborative research, or the availability and price of life-saving medicines. We trust that our political leaders will not allow 40 years of progress in health and medicine to get de-railed.”

Derick Mitchell, Chief Executive of the Irish Platform for Patient Organisations, Science & Industry, said:

“The impact of Brexit on patients both in the UK and across the EU is significant and has not been sufficiently considered in negotiations to date. Any future regulatory alignment between the EU and UK must ensure sufficient and timely supply of medicines and medical devices. It must not exacerbate delays in access to the most innovative treatments for patients. In the interests of patients and public health, patient voices should be heard loud and clear by negotiators on both sides.”

Roisin Foster, Executive Board Member, Association of European Cancer Leagues, said:

“We are deeply concerned about the threat posed by Brexit to cancer patients – in their future access to new treatments, their inclusion in drug trials and the potential impact on the transfer of knowledge that ensures optimum treatment.  Given that this year alone 3.9 million people will be diagnosed with cancer across the European Union and over 1.9 million will die from the disease, we sincerely hope that Mr Barnier and Mr Davis will give a clear commitment to ensuring protection for cancer research and access to treatment in the forthcoming negotiations, planning and implementation of Brexit.”

Notes to Editors:

The signatories to the letter are:

  • Nicola Bedlington, Secretary General, European Patients’ Forum
  • Nina Renshaw, Secretary General, European Public Health Alliance
  • Wendy Yared, Director, Association of European Cancer Leagues
  • Susanne Logstrup, Director, European Heart Network
  • Derick Mitchell, Chief Executive, Irish Platform for Patient Organisations, Science & Industry
  • Aisling Burnand MBE, Chief Executive, Association of Medical Research Charities
  • Jeremy Taylor, Chief Executive, National Voices
  • Simon Gillespie, Chief Executive, British Heart Foundation
  • Sir Harpal Kumar, Chief Executive, Cancer Research UK
  • Jayne Spink PhD Chief Executive, Genetic Alliance UK,
  • Roisin Foster, Chief Executive, Cancer Focus Northern Ireland