EUCARE Political Action Group
Hanneke M. de BoerChair
EUCARE Political Action Group
• EUCARE: joint initiative ILAE/IBE supported by unrestricted educational grant from UCB
• EUCARE mission: raise profile of epilepsy across Europe through education, research and political action.
EUCARE Political Action
Members EUCARE Political Action Group:
• Hanneke de Boer (Chair) The Netherlands - GCAE• Anthanasios Covanis Greece - IBE• Peter Dahlqvist Sweden - IBE European Committee• Mike Glynn Ireland - IBE• Svein Johannessen Norway – ILAE European
Comm.• Cigdem Ozkara Turkey – ILAE uropean Committee
Administrative support: Karen Lee-Donaldson
EUCARE Political Action
• Fonde– Objective: assess clinical + social outcomes in people
with newly-diagnosed epilepsy
• Political Action Group– Aims
• Raise awareness about epilepsy among parlementarians European Parliament
• Establish group of Parliamentary Advocates for Epilepsy
– Objectives• Identify issues to be addressed by EUCARE within
political arena• Formulate plan + develop proposal re. political
activities
EUCARE Political Action
• Raising awareness
– Questionnaire– Meeting with parliamentarians
EUCARE Political Action
• Questionnaire:
– The number of people with Epilepsy in Europe is– The costs of epilepsy in Europe are in excess of– Seizures can be stopped by medication in– The percentage of people with epilepsy in employment– Employers cannot obtain liability insurance for staff with
epilepsy– In order to hold a driving licence in the European Union, people
with epilepsy must not have had seizures for:– The majority of people with epilepsy have a learning disability – People with epilepsy should not work with computers– One can die from epilepsy
EUCARE Political Action
• Questionnaire:– What is your gender? – What is your age? – Which country are you from?
• What are your reasons for attending this conference?
EUCARE Political Action
• “medical aspects”
True False don't know
brain disorder
0.0%
20.0%
40.0%
60.0%
80.0%
100.0%
Per
cen
t
categoryMEP
PAM
True False don't know
learning disabilty
0.0%
20.0%
40.0%
60.0%
80.0%
100.0%
Per
cen
t
categoryMEP
PAM
EUCARE Political Action
Number of people with epilepsy in Europe
6.000.000
40.000.000 Europeans history of seizures
2,000,000 4,000,000 6,000,000 8,000,000 don't know
prevalence
0.0%
10.0%
20.0%
30.0%
40.0%
50.0%
Per
cen
t
categoryMEP
PAM
EUCARE Political Action
• Costs of epilepsy in Europe
• € 24 billion
€ 10 million € 1 billion € 10 billion don't know
annual costs
0.0%
10.0%
20.0%
30.0%
40.0%
50.0%
60.0%
Perc
en
t
categoryMEP
PAM
EUCARE Political Action
• Seizure-free on medication
• 60-70%
40-50% 60-70% 80-90% don't know
efficacy of medication
0.0%
20.0%
40.0%
60.0%
80.0%
Per
cen
t
categoryMEP
PAM
EUCARE Political Action
• Percentage in employment
• 40-60%
0-20% 21-40% 41-60% 61-80% 81-100% don't know
% in employment
0.0%
10.0%
20.0%
30.0%
40.0%
50.0%
60.0%
Per
cen
t
categoryMEP
PAM
EUCARE Political Action
• Employers cannot obtain liability insurance for staff with epilepsy
• Insurance obtainable• No extra premiums• PWE no extra risk
True False don't know
obtain liability ins.
0.0%
10.0%
20.0%
30.0%
40.0%
50.0%
60.0%
70.0%
Per
cent
categoryMEP
PAM
EUCARE Political Action
• Driving licence: no seizures
• UK, Ireland, Netherlands12 months
• Sweden24 months
EU Experts recommendation: 12 months
6 months 12 months18 months24 months never don't know
hold driving licence
0.0%
10.0%
20.0%
30.0%
40.0%
50.0%
60.0%
70.0%
Per
cen
t
categoryMEP
PAM
EUCARE Political Action
• People with epilepsy should not work with computers
7% photosensitiveGadgets available
True False don't know
work with computers
0.0%
20.0%
40.0%
60.0%
80.0%
100.0%
Per
cen
t
categoryMEP
PAM
EUCARE Political Action
• One can die from epilepsy
• Excess mortality:- 2-3 times general population- Young people- Preventable
True False don't know
SUDEP
0.0%
20.0%
40.0%
60.0%
80.0%
100.0%
Per
cen
t
categoryMEP
PAM
EUCARE Political Action
• Conclusion knowledge about epilepsy
– Knowledge about the condition 80% 85%– Number people with epilepsy 35% 45%– Costs epilepsy 50% 35%– Medication 55% 75%– Employment <40%
55%– Liability insurance 60% 65%– Drivers licence 35% 60%– Computers 85% 90%– Deaths 60% 85%