Making Visible the Invisible on Headache Pain: Sharing Successful Experiences Across Europe

GAfPA, in the form of Neil Betteridge on behalf of the European Alliance for Patient Access (EAfPA), was represented at this event which was hosted by Portuguese MEP Sofia Ribeiro. It was organised by the Active Citizenship Network, one of GAfPA’s key partners, which provides secretariat support for the Interest Group on European Patients Rights and Cross Border Healthcare. Together with MEP Ribeiro, ACN’s Executive Director Mariano Votta introduced proceedings, highlighting that headache pain, like chronic pain as a whole, is too often a neglected area for policy makers.

There was a real focus on patient empowerment throughout the meeting,  beginning with Prof Paolo Rossi’s call for greater education for clinicians on headache pain, including the need for patients to act as teachers. This focus was powerfully taken forward by Kalina Tyminski from the Association Française Contre L’Algie Vasculaire de la Face, herself a headache pain patient whose severe attacks could occur 10-12 times per day before her surgical intervention. There was a strong consensus that attention needed to be shifted from being pain-centred to patient-centred.

Another plea was for better data in this area, which captures the impact of the condition but also of treatment. Arlene Wilkie form the Migraine Trust in the UK said they were planning to carry out clinical audits and use patient experience surveys to generate longitudinal data in order to make a more effective case for better access to treatment.

An international perspective on medication overuse in headache was provided by Prof Cristina Tassorelli, Chair of the IHS (International Headache Society) Sub-Committee for the Guidelines of Clinical Trials. She described how easy it was for patients to become dependent on their treatment. Through patient education and a programme of switching to preventive drugs the problem can be addressed but in the real world there is evidence that this happens only rarely. In a research project funded by Research Framework Programme 7, a study of more than 1,200 chronic migraine patients showed that only 4% were receiving preventive drugs.

The European Commission view was given by Ana Gracia from DG Research and Innovation, who summarised several of the projects currently funded by the
Horizon 2020 Research Framework. For example, the DOLORisk programme looks at both genetic and environmental risk factors for headache pain. Pain has also been explicitly added to the policy agenda of the Innovative Medicines Initiative (IMI). However, meeting moderator Elena Ruiz de la Torre, President of the European Headache Alliance, challenged the Commission in strong terms for not doing enough to promote research in this area, considering the prevalence (1 to 2.5% of the European population).

Overall the meeting highlighted that there are important policy issues attached to current access to headache therapies in Europe. Over the coming period EAfPA will increasingly be engaging with this agenda, promoting awareness of the impact of headache pain and ensuring that the voice of headache pain patients is widely heard and taken in to consideration by policy makers at national and EU levels.