EUCARE Political Action Group

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


• 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


• Raising awareness

– Questionnaire– Meeting with parliamentarians


• 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


• Questionnaire:– What is your gender? – What is your age? – Which country are you from?

• What are your reasons for attending this conference?


• “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


learning disabilty

0.0%

20.0%

40.0%

60.0%

80.0%

100.0%

Per

cen

t

categoryMEP

PAM


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


• 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


• 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


• 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


• Employers cannot obtain liability insurance for staff with epilepsy

• Insurance obtainable• No extra premiums• PWE no extra risk


obtain liability ins.

0.0%

10.0%

20.0%

30.0%

40.0%

50.0%

60.0%

70.0%

Per

cent

categoryMEP

PAM


• 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


• People with epilepsy should not work with computers

7% photosensitiveGadgets available


work with computers

0.0%

20.0%

40.0%

60.0%

80.0%

100.0%

Per

cen

t

categoryMEP

PAM


• One can die from epilepsy

• Excess mortality:- 2-3 times general population- Young people- Preventable


SUDEP

0.0%

20.0%

40.0%

60.0%

80.0%

100.0%

Per

cen

t

categoryMEP

PAM


• 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%

Documents

EUCARE Political Action Group