The Pandemrix Narcolepsy European Alliance will tell the European Commissioner for Health and Food Safety next week that he needs to launch a pan-EU public inquiry into the cases of narcolepsy that were triggered by use of the Pandemrix vaccine to treat the 2009/10 swine flu outbreak.
Meeting Commissioner Vytenis Andriukaiti in Brussels next Monday (5 December) will be representatives of national narcolepsy groups from the UK, Ireland, Sweden, Finland, Denmark and Norway.
They support the 1,698 adults and children across Europe registered in the EU database of adverse drug reactions who have developed narcolepsy following use of the Pandemrix® 2009 pandemic H1N1 vaccine. The delegation includes parents of affected children.
The Alliance members will be calling for:
- Recognition of the Pandemrix/narcolepsy incident – They will ask the European Commission to make a public statement which acknowledges the scientific evidence that shows Pandemrix is likely to have been responsible for causing narcolepsy in over 1,000 people across Europe, and sets out the consequent actions that the Commission considers appropriate.
- Clarity around funding for research into treatment – In its 2014 meeting with the former health and food safety commissioner, Tonio Borg, the Alliance discussed funding for research into treatments and was advised that applications in relation to narcolepsy would be favourably considered. The Alliance will want to clarify if this is still the case and whether any research will be forthcoming.
- A public inquiry into lessons learned for future pandemics – As Pandemrix was licensed by the EU, the Alliance believes that a European inquiry is appropriate. It would allow for a full understanding of how this happened by reviewing all the paperwork and hearing from witnesses, such as members of the European Medicines Agency.
- The introduction of vaccine injury compensation standards across the EU – There exists a wide disparity in statutory vaccine injury compensation systems across EU member states. The Alliance will ask whether the Commission would consider implementing by directive a minimum standard of safety net, in the same way that one exists for standards of motor insurance.
Peter Todd, a solicitor and partner with Hodge Jones & Allen, a law firm in London, represents 88 people injured as a result of the Pandemrix vaccination in the UK. A key member of the Alliance, he says: “Narcolepsy is a serious life-long disability and given how many people across Europe were affected, this was a major incident that demands an appropriate response from governments, including the European Union.
“It is comparable in scale to the thalidomide birth defect cases, having regard to the numbers affected and the severity of the disablement. It is highly likely that many more people have been affected by the vaccination but are as yet unaware of what their symptoms indicate.
“It is vital that lessons are learned from this incident to stop a repeat when another pandemic strikes in the future.”
The Pandemrix Narcolepsy European Alliance will be holding a press conference in the lobby of the European Commission at 4.30pm CET on Monday, 5 December immediately following its meeting with Commissioner Andriukaiti.
Media interested in attending the press conference should register their interest with firstname.lastname@example.org or +44 20 3567 1208.
Notes for Editors
- Narcolepsy is a very rare and incurable autoimmune sleep disorder caused by the destruction of the part of the brain that produces hypocretin, a peptide that regulates sleep. The absence of hypocretin can lead to a range of serious symptoms including excessive daytime sleepiness, fragmented sleep, cataplexy (sudden collapses), frightening hallucinations, “micro-sleeps” during everyday activities, weight gain and sleep paralysis.
- The Pandemrix Narcolepsy European Alliance group meeting Commissioner Andriukaiti are:
– SOUND – the Irish Pandemrix narcolepsy association
– Narcolepsy UK
– Narkolepsiforeningen (Sweden)
– Tatu narcolepsy division (Finland)
– Norwegian Sleep Association
– Hodge Jones & Allen law firm (UK)
– A Danish parent of child affected by Pandemrix narcolepsy
About Hodge Jones & Allen
- Hodge Jones & Allen is one of the UK’s most progressive law firms, renowned for doing things differently and fighting injustice.
- For almost 40 years’ the firm has been at the centre of many of the UK’s landmark legal cases that have changed the lives and rights of many people.
- The firm’s team of specialists have been operating across: Personal Injury, Medical Negligence, Industrial Disease, Civil Liberties, Criminal Defence, Court of Protection, Dispute Resolution, Employment, Family Law, Military Claims, Serious Fraud, Social Housing, Wills & Probate and Property Disputes.
- Co-founder Patrick Allen is still at the helm of the firm he co-founded in 1977.
- In 2016 the firm launched Hearing their voices – a campaign to raise awareness and build conversations around the issues and the injustices we might all face.