The Place of Multiple Sclerosis in the European

Union Policy –the example of EMSP’s

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

Port

ugal

Iceland

Ireland UK

France

Belgium

Netherlands

Lux

GermanyPoland

Italy

Estonia

Latvia

Lithuania

FinlandSweden

Norway

Russia

Belarus

Switzerland

SlovakiaCzech R.

Greece

Malta

RomaniaBosnia-

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 CyprusCzech Republic EstoniaGreeceHungaryIrelandLatviaLithuaniaMalta 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 2010

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! Exercice will be repeated annually!

For further information, please visit:

www.ms-id.org/barometer2008

Thank you for your attention!

MS-ID project is co-funded under the Public Health Programme by the European Community