Members of the European Parliament turn out to support EUCAREs Political Action Group
(pictured from left): Simon Coveney MEP; Mairead McGuinness MEP; Rick OShea, RTE FM 102 (radio); Kathy Sinnott MEP; Mike Glynn, IBE Treasurer; Gay Mitchell MEP; Ava Battles, Brainwave The Irish Epilepsy Association.
A report from Hanneke M. de Boer, Chair EUCARE Political Action Group, on a meeting with Members of the European Parliament.
As reported in the IE News previously, EUCAREs Political Action Group (PAG) has been planning for some time to hold a lunch meeting with Members of the European Parliament (MEPs) at the Parliament in Brussels. The aim of this meeting would be to raise awareness about epilepsy among parliamentarians and, hopefully, to set up a Parliamentary Advocates for Epilepsy group. John Bowis, MEP for London, UK, a long-time supporter, had promised to help with the organisation of this event.
A date was set, 25 April 2006, and as a warming up exercise, an epilepsy knowledge questionnaire was developed and disseminated amongst all 700 parliamentarians in Brussels. The questionnaire contained only 12 questions, some medical and others concerning public health aspects of epilepsy.
Prior to the event in the Parliament the PAG had a preparatory meeting during which the event itself was discussed as well as future activities planned.
- Driving licences covering all classes of vehicles, drugs and alcohol issues as well as the European Union guidelines, i.e. where they are implemented and where they are not.
- Epilepsy curriculum to be included in the European harmonisation of medical education for doctors and nurses.
- Guidelines for photosensitivity some are already in existence e.g. for the BBC in the UK and in Japan.
- Consistency of supply and the use of generic Vs branded medication.
- Public education.
- Blood donations.
These topics will be considered in more detail during the next PAG meeting. Furthermore, it was proposed that guidelines could be produced by EUCARE, through expert working groups, that would clarify the ILAE/IBE position on any relevant topic.
The meeting at the Parliament was attended by 16 MEPs or their representatives, while another 26 MEPs had indicated an interest but were unable to attend on the day due to prior engagements. Given the busy workload and the high number of meetings that MEPs must attend, this was a very positive turnout.
The participants and speakers were welcomed to the meeting by John Bowis, who opened the proceedings.
Hanneke de Boer followed by presenting the results of the epilepsy knowledge questionnaire. She explained that one of the main objectives of the survey was to raise the levels of interest and awareness within the European political institutions and that 46 responses were received from 15 different countries.
Of the MEPs who responded 90% correctly identified that that epilepsy is a brain disorder, not a mental disorder. Public health aspects (e.g. costs, driving and insurance implications) were less well understood.
The presentation was followed by an extensive and lively discussion:
Rick OShea, a presenter from one of the largest national radio stations in Ireland, then spoke about how living with epilepsy affected many aspects of his life.
One of the issues he emphasised was his concern about the efficacy of his epilepsy medication if his doctor decided to change his prescription to a generic substitute. Generic drugs can be manufactured with anything between an 80 125% bioavailability of branded pharmaceuticals. This puts all people with epilepsy at risk of having breakthrough seizures.
It became clear that the MEPs were not aware of this situation and this issue will definitely come back in future discussions with MEPs. It was agreed that there is a need for research and that policy makers, medical professionals and patients need to be educated about this issue.
Arturo Furtado from the European Commission responded to the presentations. He explained that the commission can help by co-financing research in collaboration with non governmental organisations. Besides the treatment gap, there is an educational gap which can be addressed with information.
Here the European Commission has a flagship position to increase awareness through the Public Health Information Programme. Calls for proposals are issued every year and Mr Furtado urged participants to prepare a proposal for submission.
Issues which are being encouraged are:
- comparable data
- consistent definitions
- reliable health indicators
- up to date research
- production of high quality information
- definition of best practice
- dissemination of best practice issues that have direct consequence for patients, public, physicians and policy makers
In his concluding remarks John Bowis underlined the need for attention to be paid to the role played by the family and carers and to identify the support they required. Putting people in touch with the right organisation can be a low cost contribution of enormous benefit.
John Bowis asked the group to consider how best practice could be disseminated. Is there a member state which could be identified? What should the right ratio of neurologists to population be?
The meeting was then officially closed but, even afterwards, a number of MEPs stayed back, emphasising their willingness to help if ever their support was needed.
The EUCARE Political Action Group can assure you that communication with MEPs has only just begun!!!!