The Place of Multiple Sclerosis in the European Union Policy – the example of EMSPs MS Barometer 2008 Christoph Thalheim Secretary General, European MS Platform

is the umbrella organisation of the predominant national MS-Societies in currently 34 European countries and represents more than half a million people with and more then 1,5 million people daily affected by MS ( such as family and other care givers ) Contrary to other disease areas, people with Multiple Sclerosis in Europe are represented by only one European MS umbrella organisation.

What does EMSP do? Lobbying & Awareness Raising Facilitating Pan-European projects Providing information from both internal & external sources

Austria Belarus Belgium Bosnia- Herzegovina Bulgaria Croatia Czech Republic Denmark Estonia Finland France Germany Greece Hungary Iceland Ireland Italy Austria Spain Portugal Iceland IrelandUK France Belgium Netherlands Lux Germany Poland Italy Estonia Latvia Lithuania Finland Sweden Norway Russia Belarus Switzerland Slovakia Czech R. Greece Malta Romania Bosnia- Herzegovi na Serbia Hungary Croatia Slovenia Bulgaria Latvia Lithuania Luxembourg Malta Netherlands Norway Poland Portugal Romania Russia Serbia Slovakia Slovenia Spain Sweden Switzerland UK

accurate picture needed about the situation of people with MS across Europe demonstrates the differences in how MS is managed between various countries Why the MS Barometer?

What is the MS Barometer? a benchmarking tool allowing us to make appropriate comparisons peer review across Europe permits identification of what aspects of the disease are well-managed highlights in what areas national administrations need to improve their policies and practices

Structure of the Barometer Seven areas Section 1: Access to treatment & therapies (19 Questions) Section 2: Research (3 Questions) Section 3: Employment (8 Questions) Section 4: Empowerment (9 Questions) Section 5: Reimbursement of Costs (11 Questions) Section 6: Data Collection (5 Questions) Section 7: Medication coming to the market (3 Questions) Structure of the Barometer inspired by the European Code of Good Practice (1st four categories) Extensive transnational consultation with the medical and patient communities to finalise content

The Barometer at a glance 32 countries represented Vast differences identified Positive and negative aspects in each contribution Maximum scoring of 270 points

MS Barometer 2008: overall results

Access to treatments & therapies

% PwMS receiving DMDs

PwMS receiving symptomatic treatment

PwMS receiving in-patient rehabilitation

PwMS receiving outpatient rehabilitation

Palliative Care programme available?

MS society having consultative status with the national administration? Austria Bulgaria Cyprus Czech Republic Estonia Greece Hungary Ireland Latvia Lithuania Malta Poland Portugal Romania Spain Switzerland Belgium Bosnia-Herzegovina Croatia Denmark Finland France Germany Iceland Italy Luxembourg Netherlands Norway Slovakia Slovenia Sweden UK

Healthcare Expenditure as % of GDP Source: OECD figures for 2006

AND WHAT IS NEXT? MS BAROMETER 2009 Revised version of the MS Barometer questionnaire has been launched in October 2009 Results will be available at the end of the year To be shown on our website as of January ! Exercice will be repeated annually!

For further information, please visit: Thank you for your attention! MS-ID project is co-funded under the Public Health Programme by the European Community