european multiple sclerosis platform aisbl

Multiple Sclerosis Information Dividend (MSID)

This report arises from the project Multiple Sclerosis - the Information Dividend (MSID), which has received funding from the European Union, in the framework of the Public Health Programme

Report on a European Multiple Sclerosis Platform Conferenceheld on May 29th & 30th 2007 in Brussels, Belgium

This report was made possible thanks to European Commission funding from DG SANCO. The information contained in this report does not necessarily reflect the position or opinion of the European Commission. The European Commission cannot be held liable for any use that may be made of the information contained therein.

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Glossary of acronyms

CNS Central Nervous System DMD Disease Modifying DrugDMT Disease Modifying Therapy EDSS Expanded Disability Status ScaleEMSP European Multiple Sclerosis Platform FP7 Seventh Framework ProgrammeGDP Gross Domestic Product MSID Multiple Sclerosis Information DividendNGO Non Governmental Organisation PTSR Polish MS SocietyPwMS Person with Multiple SclerosisQoL Quality of LifeR&D Research and Development RRMS Relapse Remitting Multiple Sclerosis SPMS Secondary Progressive Multiple Sclerosis

To contact EMSP:European Multiple Sclerosis Platform Rue Auguste Lambiotte 144/8B-1030 BrusselsBelgium

For MSID issues: Mairead O’Leary, European Project Co-ordinator mairead.oleary@emsp.org

For any other issues: Christoph Thalheim, Secretary General christoph.thalheim@emsp.org

This report arises from the project Multiple Sclerosis - the Information Dividend (MSID), which has received funding from the European Union, in the framework of the Public Health Programme

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Introduction

Key messages from the MSID Conference

Opening Session Programme (Day 1 - May 29th 2007) • Dorothea Pitschnau-Michel • Frieda Brepoels • Phillippe Brunet • Aliki Vrienniou • Uma Aaltonen • Christoph Thalheim

Existing data on MS in Europe • Prevalence and incidence of MS – Professor Christian Confavreux • Current and future therapeutic options – Professor David Bates

Data collection and methodology • Overview of MS data collection systems – Dr Peter Flachenecker

Cost of illness • Latest studies – Professor Gisela Kobelt • Evaluation schemes in Europe – Peter Wieninger

MS research in progress • Neurostem cells in MS – Dr Stefano Pluchino • The NeuroproMiSe project – Dr Francesca Aloisi

Keynote address (Day 2 - May 30th 2007) • Ulla Schmidt

MS Barometer based on the European Code of Good Practice Dorothea Pitschnau-Michel & Mairead O’Leary

Contents

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Rationale behind the European Code of Good Practice Nicola Bedlington

Consensus Paper: Immunomodulating Therapy Professor Peter Rieckmann

Consensus Paper: Symptomatic Treatment Professor Thomas Henze

Rehabilitation Guidelines Professor Alan Thompson

Palliative Care Professor Raymond Voltz

Pathways to Implementation – Laurentiu Lazar

Workgroups • Principles to Promote the Quality of Life of People with MS • Cost of Illness • European Code of Good Practice in MS: From Theory to Practice • Therapeutic Options

• Key messagesSpeeches

• Frieda Brepoels • Phillippe Brunet • Aliki Vrienniou • Uma Aaltonen • Ulla Schmidt

Annexes

• EMSP Mission and Vision Statement

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The conference was attended by over 1�0 delegates, to whom presentations on various aspects of this devastating disease were made by members of the European Commission, other policy makers, world-renowned neurologists, health insurance & social security organisations, academics and, of course, people with multiple sclerosis (PwMS).

Introduction

• This conference launched the Multiple Sclerosis Information Dividend (MSID) - a ground breaking new health initiative which seeks to enhance equity of treatment and quality of services for European Union (EU) citizens affected by MS. Indeed, the conference served as the launch venue for MSID, which will compare and contrast MS practice across the EU with a view to creating a standardised data collection and management system (in the form of a model European MS register). MSID will also facilitate the sharing of good practice in different approaches to the care of PwMS. The conference also highlighted the work to be undertaken in promoting the European Code of Good Practice in MS - a best practice policy document which promotes the adoption of a minimum and consistent level of care for PwMS throughout the EU.

• The conference was divided into plenary lectures and workshops. This report covers the key points and conclusions from each of the plenary sessions, as well as the questions, issues and recommendations raised in the workshops. All sides from speakers and workshops are included in a separate DVD.

• Multiple Sclerosis (MS) is a complex, chronic, disabling neurological disease. It affects twice as many women as men, and is usually first diagnosed between the ages of 20 and 40 - a critical stage in the life of young adults who often have considerable family and work responsibilities. Despite being an unpredictable and progressive disease, MS does not generally affect life expectancy. However, it does profoundly affect the person’s quality of life (QoL), from disease onset until the end of their life.

• Over �00,000 people in Central and Western Europe are thought to suffer from MS. The disease is the result of damage to myelin - a protective sheath surrounding nerve fibres of the central nervous system (CNS). Damage to myelin interferes with the transmission of messages between the brain and the other parts of the body. Symptoms vary widely and include blurred vision, limb weakness, tingling sensations, unsteadiness and fatigue. For some people, MS is characterized by alternating periods of relapse and remission, whereas for others, it has a steadily progressive pattern. However, for all sufferers, MS makes life unpredictable.

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• At present, MS can be treated but not cured; early intervention with disease-modifying drugs (DMDs) with a view to preventing further neurological damage is currently the main therapeutic focus. Medication must be taken on a long-term, regular basis.

• There are huge disparities across the EU in the way in which PwMS are treated and, consequently, in their QoL. This is due (at least in part) to a lack of awareness of and information on evidence-based good practice in the field. For example:

• On average, only 28% of the PwMS in Europe have access to vital DMDs. In Poland, this figure falls to below 2%.

• In many EU member states, there is a dire shortage of medical experts with in-depth knowledge of MS. For example, in the Republic of Ireland, there are only 17 neurologists for the entire country.

• Despite the above-mentioned disparities across the EU, all member states have at least one reprehensible common feature; employment rates and job retention rates for PwMS are two to three times lower than for the remainder of the population - despite stark evidence of the health benefits of remaining in work!

Delegates at the conference.

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• There are approximately 3 million cases of MS worldwide, and an estimated �00,000 cases in Europe. MS is twice as prevalent in women than men and is more prevalent in white populations with a Northern European ancestry.

• Early and easy access to MS treatment options has the potential to improve Quality of Life and significantly reduce healthcare costs. There are large disparities in the modalities and standards of MS care across Europe.

• Treatment is most effective when given within a five-year period following diagnosis. The immediate cost of treatment and diagnosis can be offset against savings on long-term and societal costs, such as unemployment and sickness benefits.

• The largest economic burden that can be ascribed to MS is diminished workplace productivity - representing approximately half of the total societal cost of the condition.

• From one European country to another, there are many discrepancies in MS diagnosis, the availability of therapy and access to and quality of care for PwMS. A standardised approach which compares and contrasts current best practice across Europe will significantly improve the management of MS.

• An MS-specific economic model should be developed to aid better decision making in the diagnosis, treatment and care of PwMS. The MSID project will play a crucial role in the creation of this much-needed resource.

• The European Parliament, the European Commission and the German Health Minister Ulla Schmidt, during the German Presidency of the European Union endorsed the European “Code of Good Practice” on Multiple Sclerosis and its reference documents. Implementation of the Code at national level will help overcome the current unacceptable inequalities in the diagnosis, treatment and care of PwMS within and across the EU Member States.

Professors Hans-Peter Hartung, Krzysztof Selmaj, Alan Thompson and Jan Hillert were the Scientific Chairs for the two-day meeting. The overall key messages and calls to action generated by the MSID Conference are listed below:

Dorothea Pitschnau-Michel (left) with Ulla Schmidt (centre), the German Health Minister and current Chairwoman of the EU Health Council and Uma Aaltonen (Ex-MEP) (right).

Key messages from the MSID Conference

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Dorothea Pitschnau-Michel President of the EMSP

“This conference will make a decisive contribution to achieving political support for the goal of equality of care across Europe for people with MS. Everything is in place with the ‘European Code of Good Practice in MS’ and the ‘MSID project’. Now is the time to make sure that the declared intentions of all European countries are not just paper promises, but that they are actually implemented and realised.”

Dorothea Pitschnau-Michel, the MSID Conference, May 29th 2007

• Multiple sclerosis (MS) is a chronic inflammatory disease of the central nervous system and the most common cause of neurological disability in young and middle-aged adults in the Western world.

• MS has a relatively high (and increasing) prevalence in Europe and poses a major socio-economic challenge.

• There are large differences in the way in which MS is treated and managed across Europe; the purpose of this conference is to launch the MSID project and to promote the European Code of Good Practice in MS.

• The present conference is the first of its kind. It has been organised in order to highlight these deficiencies and to actively generate meaningful strategies for overcoming these differences.

Frieda Brepoels Member of the European Parliament, MEP

“For people with MS to remain active and engaged citizens, they need access to high standard, appropriate treatments, therapies and services, to enable them to continue to participate and contribute to society on an equal basis.”

Frieda Brepoels, the MSID Conference, May 29th 2007

• As the representative of 480 million European citizens, the European Parliament supports the work of the EMSP.

• The most significant characteristic of MS is that it affects people who are in the prime of life, when many of the individuals diagnosed have young families and considerable career prospects.

Opening session - Day 1, May 29th 2007

The conference’s opening session was divided into six presentations, given by members of the European Multiple Sclerosis Platform (EMSP), PwMS and members of the European Commission and the European Parliament. The presentations were often complimentary and covered many common themes and subjects concerning MS, the Code of Good Practice, the MSID project and the challenges that PwMS face in Europe today. The key points from each presentation are summarised below.

Dorothea Pitschnau-Michel opens the first day.

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• The European Parliament played a key role in the birth of the European Code of Good Practice and is a good friend and ally of the MS community, which can count on the European Parliament’s continued support.

• Given that the free circulation of persons is recognised as a binding principle of the EU, better provisions are needed to give PwMS equal rights to treatment in all EU member states.

• The European Code of Good Practice in MS supports the right to independent living for PwMS, which requires the provision of timely and appropriate health & social care but also fundamental respect for personal dignity and choice.

Philippe Brunet (on behalf of Markus Kyprianou, the EU Commissioner for Health and Consumer Affairs)

“I am encouraged by the interest shown in the European Parliament in focusing on multiple sclerosis, and I can give you my undertaking that the attention to this important health issue will remain a priority of the Commission’s public health agenda in the coming months and years.”

Philippe Brunet, the MSID Conference, 29th May 2007

• The European Commission intends to discuss a proposal for a major European Consensus Conference on neurodegenerative, neurodevelopment and non-psychiatric brain diseases (including MS) with Member States. The Conference is to be organised in 2009 or 2010 and its outcomes could have a significant impact on the Commission’s future disease prevention and management strategy.

• The Commission attaches great importance to the MSID project; part of the EU Public Health Programme looks specifically at research on neurodegenerative diseases and includes a explicit reference to MS. The Commission is interested in measuring the prevalence of MS, learning of existing treatments, identifying & describing risk factors, devising & implementing risk reduction strategies, calculating cost of

Frieda Brepoels (Member of the European Parliament) speaking on the first day.

Philippe Brunet who spoke on behalf of the EU Commissioner for Health and Consumer Affairs, Markus Kyprianou

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illness, measuring the extent of available social support and identifying gaps in service provision.

• The model European MS Register will provide the Commission with data on the prevalence and epidemiology of MS in Europe. The MSID project seeks to review good practice on treatment & therapies and to develop & publish recommendations for better social support and disease management.

• The European Code of Good Practice in MS refers to the existing EU Directive 2000/78/EC, which states that employers must provide reasonable access for people with disabilities in the work place.

• The programme of Community action in the field of health places emphasis on strengthening the Community’s overall capacities by further developing cooperation between Member States. Non-governmental organisations (NGOs) and specialised networks will play an important role in developing this type of co-operation at the national and European levels, and funding for such activities will perhaps become available to them in the future.

• A new health strategy is to be adopted in 2007. It will propose actions for assisting citizens and patients, such as promoting a more healthier lifestyle and improving the quality of the information provided to patients.

• The Commission is developing a Community framework for safe, high quality and efficient health services, by reinforcing cooperation between Member States and providing certainty over the application of Community law to health services and healthcare. One of the ongoing actions within this framework involves creating reference networks (“centres of reference”) for rare diseases. Likewise, European reference networks for highly prevalent, chronic diseases (such as MS) can also be envisaged.

Aliki Vrienniou EMSP Executive Committee member and PwMS

“Securing a good quality of life for a PwMS is equal to gaining an active citizen.”

Aliki Vrienniou, the MSID Conference, May 29th 2007

• Having rights and being able to exercise them are not the same thing; to claim their vested rights, PwMS often have to meet great challenges.

• It is unfair (and goes against fundamental human rights) that PwMS be treated differently according to the EU country in which they live.

• Modernising the European Social Model, investing in people and combating social exclusion are avowed goals of the EU. Social exclusion cannot be reduced if policies create two categories of citizen: the privileged ones and the rest. Every EU citizen must have equal opportunities and equal rights.

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• Europe has an increasingly elderly population, and politicians are looking for ways to capitalize on senior citizens’ skills, knowledge and experience. Many PwMS are highly qualified in terms of their educational and professional experience. The EU cannot afford to squander its human resources through the social exclusion of the �00,000 people or so who suffer from MS. The social inclusion of all PwMS in Europe should be encouraged, by all means possible.

Uma Aaltonen PwMS and a former Member of the European Parliament

“As one of the 500,000 plus EU citizens with MS, I know how difficult the challenges other sufferers face with this disease are; these challenges can be overcome through the effective implementation of the European Code of Good Practice and the creation of a European wide and consistent approach to the care of PwMS”

Uma Aaltonen, the MSID Conference, May 29th 2007.

• The origins of the European Code of Good Practice in MS are to be found in the courageous petitioning of the EU by Louise McVay, a PwMS living in the UK. Louise wanted to know why she could not get DMD therapy in her country, while it was freely available in other parts of the EU.

• Integration and enthusiasm can be achieved across Europe in areas such as the arts, so it can also be achieved in healthcare!

• Priority must be given to the integrity and QoL of PwMS, regardless of their state of health. At present, there are huge differences in how QoL for PwMS is managed across the EU. Some countries are better than others at ensuring that sufferers receive high standards of care.

• The financial and human resource issues prompted by MS raise many difficult questions - as do the differing needs of PwMS, especially in the areas of rehabilitation and treatment options.

Uma Aaltonen (PwMS and a former Member of the European Parliament) during her address.

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Christoph Thalheim Secretary General of the EMSP

“The MSID project represents an important political opportunity and provides a strong statement to the EU Council of Health Ministers on MS, Quality of Life, the promotion of the European Code of Good Practice in MS and the need for comparative data.”

Christoph Thalheim, the MSID Conference, May 29th 2007

• “Multiple Sclerosis Information Dividend” (MSID) is a European project which seeks to enhance equity of treatment and quality of services for EU citizens affected by MS by comparing and contrasting current MS practices across the EU to create a standardised data collection and management system which enables the sharing of good practice for the various approaches to MS care.

• The MSID project involves four different stages:

1. Creation of a defined strategy for analysing and comparing MS data.

2. Assessment of the prevalence and epidemiology of MS in Europe.

3. Review of good practice in MS treatment and therapy.

4. Measurement of the social support and benefits of good MS management.

• The MSID project is being funded for 33 months by the European Commission as part of the European Union’s Public Health Programme, with a grant of just over €�00,000. The project started in January 2007 with the appointment of a project co-ordinator. Six national MS societies (from Germany, Iceland, Poland, Romania, Spain and the UK) are involved.

• The project is supported by a Scientific Advisory Committee made up of leading neurologists, health economists, social policy advisors and researchers. This group will provide specialist input on the development of the European MS Register and ensure that the project is performed with the scientific rigour expected of such an important task.

Christoph Thalheim summarises the MSID project.

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Existing Data on MS in Europe

Professors Confavreux and Bates reviewed two different but complementary perspectives of MS in Europe. Professor Confavreux summarised the latest thinking on the prevalence and incidence of MS in Europe, while Professor Bates discussed current and future therapeutic options for treatment of the disease.

(i) Prevalence and incidence - the key points:

“It is important that the policy makers understand the implications of these figures - MS affects people very often at the most economically productive years of their lives”.

Professor Christian Confavreux, the MSID Conference, May 29th 2007

• The world famous concert cellist Jacqueline du Pré (194�-1987) was cited by Professor Confavreux as an example of the typical profile of a PwMS. MS has a significant effect on the QoL for most patients over many years, with the disease lasting on average 30 years following diagnosis. The disease is at its peak in the most economically productive years of life. Jacqueline du Pré had to retire from giving world class concert recitals at an early age because of her worsening MS.

• There are approximately 3 million cases of MS worldwide, with approximately �00,000 cases in Europe. MS is more common

in women than men (approximately 2:1) and in a white population with a Northern European ancestry.

• The overall cause of MS is still unknown. MS is neither contagious nor directly inherited. It is thought that genetic and environmental factors are involved – but the actual trigger to the disease has not yet been discovered. The incidence of MS in first degree relatives is 20 times higher than in the general population, suggesting the influence of genetic factors on the disease.

• There is a very specific geographic distribution of this disease around the world. The farther from the equator (that is to say, the higher the latitude), the higher the prevalence of the disease. This is true for both hemispheres. This observation is based on the prevalence of the disease in the USA, Australia and also in Europe.

• Data from migration studies shows that if the exposure to a higher-risk environment occurs during adolescence (before 1� years of age) the migrant assumes the higher risk

of the environment. This data suggests that MS is contracted in early adolescence, with a long incubation period between exposure and signs of first symptoms.

• Leading theory for the cause of MS is by a virus. Epstein-Barr virus (the one that causes glandular fever) in particular or other herpes viruses may trigger MS and activate the immune system to be reactive against itself. There’s also some evidence that viral infections can, in some cases, trigger new MS attacks. There may equally be other environmental influences.

• Despite a lot of epidemiological data on MS, comparing epidemiological studies among European countries is a hard task and often leads only to approximate estimates. This represents a major methodological concern when evaluating the MS burden in Europe and when implementing specific cost-of-illness studies. The MSID project will help address this current problem.

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(ii) Current and future therapeutic options - the key points:

“Improving the health of PwMS can reduce the societal cost of caring for them. Treatment must be given in the first five years following diagnosis for it to have the maximum potential long term impact. Barriers to therapy must be reduced which include access to neurologists, economic barriers and lack of knowledge about treatments.”

Professor David Bates, the MSID Conference, May 29th 2007

• Although there is no cure for MS, medicines may slow disease progression and help control symptoms. Physical and occupational therapy may also help. The erratic course of MS makes it difficult to accurately evaluate and compare the effect of different treatments in clinical studies. Since remissions and relapses occur sporadically and unpredictably, it is difficult to assess whether improvement is due to the trialled therapy or naturally occurring remission. Aside from symptom management (see the presentation below by Professor Henze), MS is treated from two perspectives; treating the relapse and treating disease progression.

• Five disease-modifying therapies (DMTs) for the initial management of MS are available in Europe (or at least in some European countries): intramuscular interferon beta-1a (Avonex), subcutaneous interferon beta-1a (Rebif), interferon beta-1b (Betaferon), glatiramer acetate (Copaxone) and, lastly, a recently launched monoclonal antibody (Tysabri) that interferes with certain functions of the immune response. A sixth agent, mitoxantrone (Novantrone), is sometimes used to treat worsening forms of relapsing-remitting MS (RRMS) and secondary progressive MS (SPMS).

• The major difference between the three interferon beta drugs is that intramuscular interferon beta-1a is given once a week, whereas subcutaneous interferon beta-1a and interferon beta-1b are given three times a week and every other day, respectively.

• Glatiramer acetate is a polypeptide mixture. Its mechanism of action is distinct from that of the beta interferons and so patients may respond differently to this drug. Glatiramer acetate is generally well tolerated and is not associated with influenza-like symptoms.

• Administered intravenously once a month, Tysabri was found to reduce the relapse rate of MS by two-thirds and showed great promise when it was launched in Europe in 200�. The product was withdrawn shortly after launch when three patients developed a brain infection known as progressive multifocal leukoencephalopathy (PML), a serious, progressive neurological disease. After a number of additional safety studies were undertaken, Tysabri is again now being used to treat patients but is available only to those who have not responded to other therapies.

• Mitoxantrone is a chemotherapeutic agent (used to treat cancers) that should only be prescribed and administered by experienced healthcare professionals. It is recommended for use in patients with worsening forms of MS. Short-term side effects of mitoxantrone include nausea and hair loss. There also is some concern about patients on mitoxantrone developing leukaemia.

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The goal of therapy

• In MS treatment, there are many issues for the patient and physician to consider. Goals may include reducing the number of attacks, improving recovery from attacks and halting further disease progression. An additional goal is relief from complications due to the loss of function of affected organs; this is called “symptomatic treatment”.

• An understanding of the potential side effects of drugs is critical for the patient because sometimes these phenomena alone deter people from taking a particular drug. Patients may choose to avoid drugs altogether or choose an alternative drug that may offer relief with fewer side effects.

Continuous dialogue between the patient and physician about medication is essential when determining the individual’s treatment needs.

• Given the available evidence, early, aggressive treatment is warranted in all patients at risk of developing MS. The rationale for early treatment is as follows: (i) the availability of safe and effective

(though expensive) drugs for patients with RRMS and after one attack, (ii) difficulty in identifying benign cases in the early stages of MS and (iii) indications that interferon beta treatment has beneficial effects on CNS inflammation, compared with placebo.

Drug Comments State of development Lamotrigine – also used to treat epilepsy

May provide neural protection Phase II trials

Campath (Alemtuzumab)

Monoclonal antibody – administered once a year

Still in early development – high incidence of Pneumocystis carinii pneumonia (PCP)

FTY 720 (Fingolimod) A sphingosine-1-phosphate receptor agonist. Sphingosine is a compound found in the myelin sheath. It stops invasion of the CNS by T cells

Phase II trials

Anti-interleukin-2 receptor monoclonal antibody

Has been tested in PwMS who have not responded to interferon therapy

Moving into phase III trials

Teriflunomide Immunomodulator Recruiting for a phase III trial in RRMS.

Daclizumab Interleukin-2 receptor antagonist Phase II trials

Professor David Bates reviewing MS treatments.

Some new drugs currently under development for the treatment of MS

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“A pan-European data collection system will allow us to compare how MS is being managed across the region and help us to identify and adopt best practice.”

Dr Peter Flachenecker, the MSID Conference, May 29th 2007

• Data collection in MS allows patient care to be monitored and tracked, creating standardised records with the ultimate aim of improving patient care. Furthermore, on a longer timescale, the data can be used in epidemiological studies (such as that described by Professor Confavreux) to track the spread of MS and to measure treatment availability/types.

• For example, the German register provides information on a wide range of topics, such as age, job status and time since diagnosis for all of the 120,000 to 130,000 PwMS (i.e. including young PwMS) in Germany. This is equivalent to 2�% of the PwMS in Europe as a whole. The register project was established in 2001. Five MS centres in Germany were involved in the pilot and

provided a representative selection of patients. Denmark, another country with a sophisticated data collection system, started its register in 19�� and collects data from many of the PwMS living in the country.

• A typical database will contain information on:

(a) Personal & demographic data, such as time of diagnosis, diagnostic accuracy, symptoms at onset and disease course.

(b) Disability and treatment (DMDs and symptomatic treatments used)

(c) Socio-economic and healthcare data, such as employment status, type of care given, hospitalisations and the characteristics of the medical establishments which treat PwMS.

• Existing Europe-wide databases include EDMUS and MS BASE. All operate to a very high standard and provide very useful information but do not collect and assess data in the same way. This means that it is very difficult to make meaningful

comparisons between databases and compare (for example) best practice sharing in MS care across Europe. The MSID project will provide a standardised approach to data collection and the assessment of MS care in Europe.

Data Collection and Methodology

Dr Peter Flachenecker from Germany looked at how current MS data collection systems work and the future role of the MSID project in this area. Professor Flachenecker is a member of the MSID project’s Scientific Advisory Committee, where he is involved in providing scientific input and data collection.

Professor Peter Flachenecker discussing data collection systems

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Cost of Illness

MS very often first affects European citizens at a time in their lives when they are at their most productive and are already working, planning for careers and/or wanting to have children. The disease is lifelong; at present, there is no cure for MS.

The MSID Conference featured two health economics presentations – one by Professor Kobelt (Sweden), who looked at the results of the latest European studies from an academic perspective, while Peter Wieninger from Austria reviewed evaluation schemes in Europe. Health economics is a branch of economics concerned with issues related to the allocation of healthcare resources.

Studies in MS need to include an assessment of the effect of treatment beyond the end of a clinical trial. Also, analysis should be done from a societal perspective, since many of the costs occur outside the healthcare system. The challenge in the economic evaluation of MS is the complexity of a progressive disease where acute symptoms are present either permanently or intermittently. Use of the Expanded Disability Status Scale (EDSS) – the standard tool for assessing the progression of MS and which notably measures an individual’s ability to walk unaided - shows that the higher the EDSS score, the greater the loss of QoL and the greater the reduction in economic output.

Symptoms may or may not represent risk factors for the progression to disability, for example. Economic evaluations must take both symptoms and disease progression into account. The economic impact of MS is higher in men, due to their greater participation in the labour market.

Some of the (direct) costs associated with MS are obvious, such as the price of DMDs. Less obvious (indirect) costs would be, for example, the number of days off work due to MS. Measures applied to humanistic issues (such as the suffering caused by the disease) are known as intangible costs. Health economics studies attempt to identify and measure direct, indirect and intangible costs. At present, it is impossible to compare different published health economic evaluations in MS; these studies are very often incomplete (because of the complexity of MS) and may have different objectives and endpoints. Like must be compared with like. However, all studies demonstrate the high costs associated with MS, both in terms of loss of QoL and impact on economic parameters.

Peter Wieninger describes an evaluation scheme for medicines.

Professor Kobelt outlines the economic impact of MS

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Key points from Professor Kobelt’s presentation:

“As a PwMS’ disability increases over time, their quality of life decreases and costs increase. Changing the speed of disease progression will prevent/delay PwMS going to disease states with high costs and low quality of life.”

Professor Gisela Kobelt, the MSID Conference, May 29th 2007

• Based on an economic model of 28 countries, the total cost of MS in Europe for 200� was estimated to be €12.� billion. Compared with other more common neurological diseases (such as stroke and migraine), MS has a far greater negative economic impact.

• As MS progresses, it results in a growing and significant burden on patients, families, national healthcare systems and society at large. Results from a pan-European study (Austria, Belgium, Germany, Italy, Netherlands, Spain, Sweden, Switzerland and the UK) clearly show that as MS progresses, work capacity and QoL decrease.

• The impact of increasing levels of MS disability on health-related QoL was strikingly similar across the various countries and demonstrated the significant effect of MS on patients’ physical and emotional well-being.

• The average MS patient loses the equivalent of 3-4 months of full QoL every year, while the economic burden of MS (due to healthcare costs and productivity losses) ranges from €10,000 per year in early disease to €��,000 per year in late disease. Countries with the highest incidence of MS have the highest economic cost; for example, Sweden – where there is a high prevalence of MS patients - bears the most significant economic cost, whereas Estonia has the lowest incidence of MS and the lowest economic impact.

• Costs increase significantly with the worsening of the disease. Patients with a severe disability provoked by MS were found to have total costs that are three- to four-fold higher than in the early stages of MS disability. The mean annual cost per patient is approximately €18,000 for patients with mild disease, €3�,�00 for moderate MS and €�2,000 for severe MS.

• The healthcare costs associated with an MS relapse (i.e. a period of increased disease activity) was between €2,800 and €4,000 per relapse. National health insurance systems cover approximately half the cost of care in most countries, with the remaining costs being absorbed by the patients and their families.

• The largest economic burden from MS is due to diminished workplace productivity, representing over 40% of the total societal cost of the disease. The percentage of patients in employment ranges from 24 to 41%, while 33 to 4�% had been forced into early retirement.

• Each year, the average MS patient is estimated to lose nearly one-third of a quality-adjusted life year, when compared with the general population. This loss is equivalent to 3-4 months of life in perfect health each year.

Cost of Illness

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Key points from Peter Wieninger’s presentation:

Medicines are evaluated in a three-step process. The first step involves looking at how the drug works and comparing it with other therapeutic alternatives; this includes comparisons (for example) in terms of safety and efficacy, often against a placebo (a dummy drug). The second step measures how effective the drug is relative to existing and/or standard therapies. The third and last step is a pharmaco-economic evaluation. The collective impact on the budget of all three measures are then reviewed.

“It is important to identify the most effective treatments and standards of care across Europe and the best way these can be used to help PwMS”.

Peter Wieninger, the MSID Conference, May 29th 2007

• The role of health insurers can be divided into four main areas; the first is to facilitate patient access to medicines via consistent and fair pricing; the second involves working with pharmaceutical companies to increase spending on R & D through improving the efficacy of new medicines (thanks to savings made in the marketing of medicines), the

third corresponds to increased innovation with a view to developing newer, more targeted medicines which meet a real medical need and, lastly, the fourth area seeks to control expenditure.

• As measured by the number of innovative drugs launched each year, pharmaceutical R & D productivity is decreasing - despite the fact that the total research spend has increased by 147% since 1993 (to a worldwide industry total of $�0 billion in 2004). There are various reasons for this, with the main three being (i) difficulty in translating basic research into effective medicines, (ii) a shortage of physician-scientists with both medical and research expertise and (iii) the industry’s emphasis on developing blockbuster drugs instead of making medicines that are more targeted and effective for specific patient populations.

• Across Europe, national healthcare budgets are always subject to political or administrative pressure. Total expenditure on health varies from one EU member state to another. Germany, for example, has the highest total expenditure on health (as measured by the percentage of gross domestic product (GDP) at 10.9%), while the Slovakian Republic has the lowest (�.9% of GDP).

• Possible future directions for new health economic approaches include (i) taking into account patients’ concerns about the pricing and reimbursement policy for new medicines, (ii) supporting improved access to medicines via (for example) the harmonisation of distribution costs & taxes and development of new systems to ensure best practice (in market authorisation procedures, for example) which, to some extent, is already being done: this also includes risk–sharing between the manufacturers of a medicine and the national payers; in the UK, for example, reimbursement of DMDs is linked to their long-term efficacy, (iii) better exchange of information and views on issues which affect high-cost medicines and alternatives such as biosimilars (copies of existing biotechnology-based medicines like DMDs but available at a lower cost).

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(i) Neurostem Cells in Research

“Stem cells can be thought of as ‘the body’s self-repair kit’ and have the potential to develop into a number of different cell types in the body, including neurons. Positive results have been seen in some cases with experimental MS but much work remains before stem cells can be considered an effective therapy in human MS”

Dr Stefano Pluchino, the MSID Conference, May 29th 2007

• Stem cells are a special type of “starter” cell that have the ability to persist in adult tissues. Stem cells are the foundation for every organ, tissue and cell in the human body. Stem cells may be able to repair or replace damaged tissue, thereby reversing diseases such as MS and cancer. Stem cells can continually renew themselves and can differentiate into a diverse range of specialised cell types, such as neurons.

• There are at least three major categories of mammalian stem cells: “Embryonic stem cell” (found in the inner cell mass of the early gestation embryo), adult stem cells (found in restricted areas or niches of adult tissues) and foetal stem cells (such as the cord blood stem cells which are found in the umbilical cord). In a developing embryo, stem cells differentiate into all of the specialised embryonic tissues. Once a set of stem cells has formed their final tissue (such as a muscle or a neuron), it mostly loses its ability to extensively regenerate.

• Many medical researchers believe that the broad concept of stem cell therapy might have the potential to radically change the scenario of future treatments for a number of human diseases. Hence, because of the ability of stem cells to either differentiate into tissue-specific, specialised daughter cells (such as myelin-forming cells and neurons) or interact with the immune system, intravenous stem cell transplantation might be soon used to tackle MS.

(ii) The NeuroproMiSe Project

The key aim of NeuroproMiSe is to identify genetic risk factors and disease mechanisms of MS and to provide new bio-therapeutic compounds to cure MS and other chronic neuro-immune diseases.”

Dr Francesca Aloisi, the MSID Conference, May 29th 2007

• “Neuroprotective Strategies for Multiple Sclerosis” (NeuroproMiSe) is an Integrated Project within the EU’s Sixth Framework Programme. It is part of the priority programme on “Life Sciences, Genomics and Biotechnology for Health”, which aims to advance medicine and QoL for European citizens. NeuroproMiSe is an EU-funded research programme which started in 200� and is scheduled to finish in 2010. Nearly €12 million in funding has been awarded. The project involves 20 participants from nine different EU counties (Italy, Germany, Finland, the UK, Sweden, the Netherlands, France, Austria

MS Research in Progress

Drs Pluchino and Aloisi provided a review of some of the most exciting and forward-thinking MS research currently being undertaken within the EU. Dr Pluchino provided a summary of the cutting-edge research now being undertaken using stem cells and their use in MS, while Dr Aloisi presented a major EU-funded research programme called NeuroproMiSe.

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and Greece). NeuroproMiSe focuses on three core themes underlying the MS-associated disease process:

1. Genes 2. Inflammation 3. Neurodegeneration

• The project aims to gain a better understanding of the causes of MS and to enable the development of more effective therapies.

• The first goal is to look at the genetic factors behind MS. It is hoped that this will lead to improvements in MS risk assessment, diagnosis and monitoring for treatment efficacy. Studies here feature research (in both animals and human populations) on genes which are thought to be responsible for (or involved in) the development of MS. Additional studies on models of neurodegeneration and the associated genetic changes will also be undertaken.

• The second goal is to better understand the immunological mechanisms behind neurodegeneration and to identify potential new medicines which can stop this process.

• The third goal is to study pathways of neuroprotection and to develop novel ways to prevent or limit neurodegeneration in experimental MS-like disease models.

• Results are expected according to the following timetable:

Date Activity End 2007 Development of new

experimental models for analysing the molecular pathways underlying neurodegeneration

2008 Identification of critical pathways in neurodegeneration

2008–2010 Development and testing of new neuroprotective compounds in experimental models

Ongoing - end 2010

Identification of MS susceptibility genes (with a focus on immune response genes)

2010 Identification of the most promising neuroprotective compounds for use in PwMS

More information can be found on the project website (http://www.neuropromise.eu) and a partner website (in Italian): Istituto Superiore di Sanità (http://www.iss.it)

NeuroproMiSe: the timetable for expected results

Dr Aloisi answers questions on the NeuroproMiSe Project

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Ulla Schmidt, the MSID Conference, May 30th 2007

Ulla Schmidt, Federal Minister of Health for Germany and Chairperson of the EU Council of Health Ministers, provided the keynote address. The key points were:

• There is considerable variation amongst EU member states as to how MS is treated and managed. Every member state is now called upon to develop a comprehensive framework for dealing with MS.

• Member States have to ensure that MS is detected at the earliest possible stage.

• Member States also have to ensure that patients diagnosed with MS do indeed have access to proper treatment and that they receive the most effective medication possible. Newer, more effective treatments should be made available as soon as possible.

• The European Code of Good Practice will help provide a framework for ensuring that all European citizens with MS receive the best treatments and care of the highest quality.

• The European Code of Good Practice calls for there to be no discrimination against PwMS in the workplace or in any other setting. Patient self-empowerment is key, and the involvement of the patient in all aspects of healthcare delivery must be strengthened.

• Qualified and transparent patient information is vital; the European Commission’s “Health-EU” portal will play an important role in disseminating the European Code of Good Practice. A presentation on MS to the Commission via the EU-Health Portal will be made shortly.

Ulla Schmidt, the German Health Minister and current Chairwoman of the EU Health Council, giving the key note address on Day 2.

Welcome and Keynote Address - Day 2, May 30th

“It must be ensured that MS patients throughout Europe are cared for and have access to treatment with suitable medicines at the earliest possible date, so that the quality of their life is improved. The achievement of such an equality of opportunity is our responsibility”.

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Mairead O’Leary and Dorothea Pitschnau-Michel, the MSIDConference, May 30th 2007• The MS Barometer is a tool that the EMSP

will develop during the MSID project in order to accurately compare the management of MS across European countries. At present, PwMS throughout Europe do not have equal opportunities to receive the best treatments available and, therefore, their QoL is far inferior to their counterparts in countries where MS is better managed. The MS Barometer will be a benchmarking tool by which all countries will be ranked. A country’s position on the table will show where it lies in relation to its neighbours.

• In Poland, for instance, only 1% of PwMS are treated with DMDs that can positively impact on the treatment of the disease, whilst in Sweden approximately �0% of PwMS have access to DMDs.

• Ireland only has 17 neurologists for the treatment of an estimated population of 7,000 PwMS, whereas Iceland has 18 neurologists for 330 PwMS!

• The latest treatments for severe cases of MS are covered by some national health insurance schemes and are being reimbursed in Germany and several other EU member states, while patients in the UK resorted to taking legal action to recover the costs of certain therapies taken.

MS Barometer

Mairead O’Leary, MSID project co-ordinator, presenting the MS Barometer.

“The initial results from a survey of EMSP members show that the range and magnitude of how MS is managed across the EU vary immensely. It indicates that some countries manage MS far better than others – it also illustrates how much needs to be improved upon in the coming years.”

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The Rationale Behind the “Code” - Nicola Bedlington

“The Code follows a rights-based approach and is not a static document, rather it will be a living one and will be amended with new consensus papers as and when they become available. It will have a critical role in the evaluation and benchmarking of MS care across Europe.”

Nicola Bedlington, the MSID Conference, May 30th 2007

• The European Code of Good Practice in MS is intended for all stakeholders involved in the lives of people affected by MS, including policy makers & administrators, the medical profession, the corporate sector, volunteers, families, and, of course, the PwMS.

• The Code has four sections:

1. Equal rights and access to treatment, therapies and services in the management of MS.

2. A shared agenda in MS research.

3. Employment and job retention.

4. Participation and empowerment.

• To be successful, the Code must be effectively implemented at national level by EMSP members. These national MS societies must work closely with their respective national health ministries to ensure that this happens.

The European Code of Good Practice in MS

This series of six presentations covered many common themes and issues concerning MS, its diagnosis & treatment and the European Code of Code Practice in MS. The key points from each presentation are summarised below.

Nicola Bedlington, responding to a delegate’s question on the Code of Good Practice.

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Consensus Paper: Immunomodulating Therapy - Professor Peter Rieckmann

“The goal is clear in the treatment of MS- reduce the damage and enhance the repair”.

Professor Peter Rieckmann, the MSID Conference, May 30th 2007

• There are several types of MS. Most vary in the degree to which they affect the Central Nervous System (CNS). The most frequent type of MS is RRMS, which affects 8�% of all PwMS. People with RRMS will experience periods of relapse, followed by complete or partial recovery. Half of this population will eventually experience progressive MS, with or without periods of recovery. There are other types of more aggressive, progressive MS, which affect the remaining 1�% of PwMS.

• There are various types of DMT available for PwMS: these include Tysabri, interferon beta and glatiramer acetate. DMTs regulate the immune system and reduce the relapse rate. Interferon beta treatments can slow the progression of physical disability.

• The injection type and frequency varies from one treatment to another. The adequacy of weekly dosing has been questioned, although whether more frequent dosing is beneficial remains unclear. With more frequent subcutaneous dosing, an increased incidence of neutralising antibodies also must be considered.

• Treatment guidelines help physicians treat PwMS in the most effective way possible with DMDs. This is because the clinical trials undertaken when medicines are first tested do not include many “real world considerations” which confront patients and doctors when the clinical trial is over. The limitations of clinical trials are notably as follows:

1. The types of patients used in the clinical trial do not reflect the “real-life” patient population. For example, participants in clinical trials are selected according to very strict inclusion criteria, which is not seen in the real world.

2. Many different clinical trials cannot be compared. For example, this may be because they often use different dosages for different period of time – like must be compared with like.

3. The effect of increasing doses and using additional treatments are not always evaluated, so it is difficult to identify the most effective treatment programmes.

4. The definition of “treatment failure” is required. It is often difficult to know when a treatment has stopped working because of the complexity of MS – at the moment, there is no acknowledged way of defining this point.

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Symptomatic Treatment – Professor Thomas Henze

“Symptomatic treatment should be as effective as possible and aim to improve or eliminate the person’s typical disorder associated with MS in order the improve their Quality of Life to the maximum possible.”

Professor Thomas Henze, the MSID Conference, May 30th 2007

• Besides immunomodulation and immunosuppression, specific treatment of symptoms is an essential component of the overall MS management process. Symptomatic treatment seeks to eliminate or reduce the symptoms impairing the patients’ functional abilities and QoL. However, treatment of the symptoms does not affect the course of MS itself. The available drug treatments are limited both in efficacy and in the evidence available for guiding their use. Some agents are poorly tolerated - often because they exacerbate co-existing symptoms.

• The most common symptoms in MS are spasticity and muscular weakness, fatigue, cognitive dysfunction, pain, urinary problems and sexual dysfunction. Symptomatic treatment may delay or eliminate the development of a secondary physical impairment.

• Fatigue is a very common problem faced by PwMS. Fatigue may sometimes be managed by adjusting activities of daily living, with an emphasis on one or two brief periods of sleep during the day, plus moderate exercise. If these measures are not helpful, then medications such as amantadine can be used. Other medications include pemoline and fluoxetine. Pemoline is a CNS stimulant and should be used with caution. Fluoxetine (Prozac) is an antidepressant which also is sometimes helpful to increase “energy”. In some patients, modafinil may decrease fatigue, too. Other antidepressants and psychotherapy may also be used.

• Cognitive dysfunction is sometimes experienced by MS patients. This is associated with loss of retrieval rather than loss of memory. These difficulties can contribute to increased disability, social problems and coping abilities. PwMS with cognitive problems need to undergo detailed neuropsychiatric evaluation in order to be correctly advised on rehabilitation techniques and occupational therapy.

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Rehabilitation Guidelines - Professor Alan Thompson

“Specialist neurological and neurological rehabilitation services should be available to every person with MS, when they need them.”

Professor Alan Thompson, the MSID Conference, May 30th 2007

• Rehabilitation is a process requiring a highly-trained, well-informed team. Teamwork must be dynamic and flexible so that it can be tailored to the needs of the PwMS. On the basis of thorough assessment, achievable, measurable goals can be set. The PwMS is a key member of the care team.

• Successful rehabilitation services share four common principles:

1. The services must be of high quality.

2. They must be as accessible as possible (home-based, if feasible).

3. Services must be continuously adapted to the patient’s needs.

4. The services must be flexible, timely and evidence-based.

• Once a person has been diagnosed with MS, the guidelines recommend that the following 10-point approach be followed:

1. Referral to an expert team post-diagnosis.

2. Relevant information is made available at and after the time of diagnosis e.g. housing, vocational assistance, etc.

3. Focused symptom and disability management should be made available to the PwMS as required.

4. The care team should be multidisciplinary.

�. Set short- and long-term goals with the PwMS.

�. Provision of adequate and appropriate community care as a person’s disability levels increase (including respite care).

7. Healthcare needs of PwMS should be addressed according to the health system in their home country.

8. Rehabilitation services must be integrated across all boundaries.

9. Service delivery must be high quality, accessible, flexible and timely.

10. Service delivery must be equitable and home-based where required.

Professor Alan Thompson (right) and Professor Hans-Peter Hartung (left) talking with delegates.

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Palliative Care - Professor Raymond Voltz

“There is a need for a palliative care approach in MS – at the moment there are many unmet needs of people severely affected by MS”

Professor Raymond Voltz, the MSID Conference, May 30th 2007

• Palliative care should not just be associated with helping people with cancer; there is presently confusion about what this term means. When what palliative care represents is explained to PwMS, they become more interested in the approach.

• Palliative care is about helping the PwMS to live until death with respect to four different criteria:

1. Ensuring maximum QoL.

2. The PwMS lives safely and does not put him/herself or others at risk.

3. Assistance for living with the greatest amount of autonomy possible.

4. Control of symptoms to the greatest degree possible.

• Studies have shown that the needs of many people with severe MS are not being meet by current care. The most important failing is psychological support, followed by occupational therapy and speech therapy The European Code of Good Practice in MS cites the need for all PwMS to have access to high-quality palliative care.

Pathways to implementation - Laurenţiu Lazăr

Speaking as a national society, for the Code to be successfully implemented on a country-by-country level, it must be adapted to reflect the needs of the individual European State”.

Laurenţiu Lazăr, the MSID Conference, 30th May 2007

• Following an audit undertaken in 2000, the Romanian MS Society identified the need for (i) an information and counselling programme and (ii) an awareness raising programme.

• These two findings have led to the development of a national MS Helpdesk which has established a database of PwMS living in Romania. The database includes such information as age, disease status, date of diagnosis, rehabilitation care offered and whether the person is receiving DMDs.

• The information gathered in the Romanian MS database can be compared with the minimal requirements stated in the European Code of Good Practice in MS, in order to identify where current practice in the country falls short of the standard.

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1. Principles to Promote the Quality of Life of People with MS

Facilitators: Paul Rompani (MSIF) and Allen O’Connor (Ireland)

Key points:

• To be effective, initiatives designed to improve the QoL of people with MS must be implemented efficiently on a national level and must be seen to have an impact on the QoL of PwMS.

• The Multiple Sclerosis International Federation (MSIF) has developed a set of “Principles to Promote the Quality of Life of People with MS”, in order to support advocacy on a national level by MS societies and on an international level by the organisation itself. The national implementation of these QoL Principles has provided valuable best practice experience.

• The Spanish MS Society (FELEM) drafted a nationwide questionnaire around each of the 10 domains covered by the QoL Principles. �00 responses were received. On this basis, focus groups (comprising a wide range of stakeholders) were organised and the results were drawn together in a report at the end of 200�.

• National differences should be acknowledged – for example, in Greece, access to treatment is not a problem but communication with senior officials (notably about the importance of rehabilitation and management that contribute to an improved QoL for PwMS) is difficult. This contrasts with Ireland, where PwMS living in cities have a greater access to services and facilities than those living in isolated rural areas. A person-centred approach is essential in this case.

• Consensus on the best way to measure QoL is essential. QoL measures need to be introduced into services that are delivered to PwMS, along with tools to measure other parameters. These tools need to be sensitive to the individual needs of PwMS.

2. Cost of Illness - the Benefit of Early Treatment

Facilitators: Professor Gisela Kobelt (Sweden) and Christoph Thalheim (EMSP)

• As the disease and disability progresses, the societal costs increase. The secondary progressive form of the disease is associated with higher societal costs than the relapsing-remitting form. There is an abundance of economic data on MS but these are not used widely because many information resources cannot be compared and contrasted.

• Some factors are more consistent than others - the cost and method of treatment and losses associated with productivity of PwMS, for example. Differences and variations are seen in the uptake and place of treatment, as well as in the type of service provision.

• There is a constant decline in QoL as the disease progresses. This is seen in all countries. When the severity of the disease is low (as measured by the standard EDSS indicator, i.e. the ability to walk unaided), the costs are mainly directly associated with medical treatment. However, the latter still

Workgroups

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represent only a small percentage of the overall costs, when compared with more severe disease. In Austria, for example, the total annual cost of treating a PwMS who has a mild form of the disease is approximately €20,000 – this rises to over €�0,000 per year for a person who has a more severe form of the disease, as measured on the EDSS. This pattern is seen repeatedly across Europe.

• There is lower awareness of the higher societal costs, compared with the direct payer costs. This is where the challenge lies in communicating these higher but longer-term costs. Downward pressure on budgets emphasises the immediate view rather than the long-term view. In other words, a short-term position which is adopted because it appears less costly may, in reality, cost more in the long term.

3. The European Code of Good Practice – From Theory to Practice. The Role of MS Societies in Implementing and Monitoring the Code

Facilitators: Professor Peter Rieckmann (Germany) and Izabella Odrobinska (Poland)

• The Polish MS Society (PTSR) provided a handy and useful best practice case history. How the national society looks at itself and how it is looked at by external stakeholders is important. The MS society is best placed to provide guidance and support because it is probably the only organisation with the dedication and commitment needed to change the situation.

• Be proactive rather than reactive. A national MS society must be seen as a partner, rather than as a beggar who is continuously asking for something and providing nothing in return. For effective implementation of the Code, the society must be seen as a professional, well-organised, independent organisation which is willing to work with external stakeholders.

• Ensure that the society has both short-term and long-term strategies for improving QoL and that the Code is used as the reference document on which other activities are built. Check that the Code highlights needs and addresses issues that are of national importance.

• The PTSR’s advocacy project has one prime aim – to improve the QoL of PwMS in Poland. The advocacy project uses the Code as the cornerstone of its work. In Poland, the Code has been interpreted on a national level and the project is divided into three stages – information, advice and support.

• Information is disseminated via an MS Information Centre with a telephone helpline that provides information and advice to PwMS. Advice is given by professionals such as psychologists, lawyers and counsellors, although the onus on solving problems remains with the PwMS. The support function is represented by an ombudsman who can represent PwMS in court in cases of discrimination.

• The Code has also been used to support a lobbying campaign called “Positive Impulse from Poland”. The goal is to increase awareness of the appalling situation of PwMS in Poland. The PTSR has obtained the patronage of a Polish MEP and has successfully raised the profile of MS and PwMS using creative techniques such as a photography competition and presentations will be made during MS Days in the European Parliament in October 2007.

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4. Therapeutic Options

Facilitators: Professors David Bates (UK) and Alan Thompson(UK)

• Available therapies are only partially effective, and the ultimate goal of curing MS is still far from being attained. Future therapeutic options for MS will depend on improvements in understanding the precise factors involved in causation of the disease, how it progresses and, subsequently, the development of orally-administered medicines that can improve on today’s injectable therapies.

• In MS, a multidisciplinary approach is needed to support the PwMS, influence the various healthcare providers and offer clinical, rehabilitation & behavioural support. Such interventions must take account of the PwMS’ experience of the disease. This approach should:

1. improve PwMS-physician communication.

2. increase the use of specialised MS nurses in hospitals and in the community.

3. use support programmes sponsored by the pharmaceutical industry. However, transparency issues are important and have to be taken into consideration. For example, there may be commercial motives in these types of programme; rather than being hidden, these factors should be clear from the outset.

• Treatment should be tailored to the needs of the PwMS. Side effects are an important consideration. The exact side effects depend on whether beta interferons or glatiramer acetate are being taken. These symptoms can be managed in a variety of ways, including evening administration, gradual dose escalation or co-medication. Likewise, injection site reactions can be minimised using a combination of adequate training, aseptic injection techniques, site rotation, warming of the medication and the use of an auto-injector (very effective).

• The availability of DMT varies widely across Europe, as does the nature of symptomatic treatment, which is dependent on the drug formularies (the approved list of medications) within a given hospital or treatment centre.

The European Code of Good Practice should be used to ensure that all EU-based PwMS receive the best available treatment and care.

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1. Principles to Promote the Quality of Life of People with MS

• QoL principles must be applied on the individual level and MS societies need to acknowledge the importance of the individual.

• The measurement of an individual’s QoL must be standardised to ensure meaningful comparison across Europe.

2. Cost of Illness – the Benefit of Early Treatment

• Early treatment means that societal costs are offset in the long term and are combined with QoL gains. Consensus on an MS-specific economic model is needed; the latter should include data collection registers based on common definitions.

• Communication must be directed towards decision makers at all levels, and the cost issues around non-treatment must be emphasised as a priority.

3. The Code of Good Practice – From Theory to Practice. The Role of MS Societies in Implementing and Monitoring the Code

• Create an endorsement strategy at the national level, which includes a call for support from the country’s Health Minister. Each national MS society must ensure that momentum is maintained.

• Ensure that national associations have educational and awareness-raising strategies in place. A key point to remember is that material suitable for different audiences needs to be developed. Enhancing best practice sharing (as is happening in Ireland) and developing an effective communication strategy are important.

4. Therapeutic Options

• Increasing the number of professionals involved in MS care and raising their levels of expertise.

• Lobby at the national level for effective implementation of the Code of Good Practice.

Key messages coming from the workgroups

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Day 1 - MSID Conference - May 29th 2007

Frieda Brepoels (Member of the European Parliament)

Good afternoon Ladies and Gentlemen,

It is a great honour for me to have the chance to address a conference such important as this one on a subject that should be of great concern to all policy makers in the field of healthcare in our society. I want to express my gratitude to the European MS Platform for the invitation.

Before I start my speech I would like to congratulate and thank the executive committee of the EMSP for bringing together more than 30 MS national member associations under this European umbrella and for supporting thousands of persons with MS and their families to live their lives as normally as possible.

My introduction to the world of MS started already more than 2� years ago. Since then a lot has changed – developments in research, medical treatment,… I was very happy to get acquainted with your platform during the European MS awareness week last year in

the European Parliament. In particular, I was positively surprised by the commitment of so many people from all the different member states.

Today, I am amongst you again because I firmly believe that the European Parliament, as the representative of 480 million European citizens, has the important task and responsibility to support your work. Because more than �00.000 people across the EU are directly affected, but also because the disease indirectly affects many more people who are close to them.

At the end of 2003, the Parliament approved a report based upon a petition submitted by a British woman with Multiple Sclerosis, Louise McVay. She urged the Members of the Parliamentary petition committee to take the initiative for this report. Health Departments in most member states of the Union provided information which was included in the report.

The contents of the report analysed the experiences of people with MS in Europe. It looked at the type of medical support they were able to obtain from their respective healthcare services, as well as at the relation of MS patients with their social and family

environment, and in particular at their employment prospects. The report also emphasised the most significant characteristic of MS. Namely that it affects people who are at the prime of their life, when most will have young families and considerable career prospects.

This report was later the starting point of the code of good practice. It urged the Ministers of Health of the European Union to develop such a code with regard to MS patients. The draft of this code has been prepared by the European Multiple Sclerosis Platform. It is recognised that the European Parliament played a key-role in the birth of this code and is still a good friend of the world of MS which can count on its continued support.

This Code is in fact a political statement which outlines the state of the art practice of dealing with MS (patients). This good practice is described in four key areas, which are critical for persons with MS, their families and their carers.

The first area is equal rights and access to treatment, therapies and services in the management of Multiple Sclerosis. Equal treatment, non-discrimination and reasonable accommodation are concepts enshrined in

Speeches

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European Union law. For people with MS to remain active and engaged citizens they need access to high standard, appropriate treatments, therapies and services, to enable them to continue to participate and contribute to society on an equal basis.

Some people are fortunate in their access to treatments, therapies and services, but the disparities between the types of care and support available are simply too great both within and between the member states of the Union. This must be remedied by raising the level of care provided across the board bringing about equality of access as a clear objective. With free movement of persons recognised as a binding principle of the Union, better provisions are needed to enable people affected by MS equal rights to treatment in all EU member states.

At the end of the code there is a reference that provides a comprehensive and detailed guide on each aspect that people affected by MS need and thus should be equally provided for all citizens of the European Union. One of them is the provision of a clear, certain diagnosis as early as possible by a neurologist with specialist knowledge in MS; another important one is the timely access to appropriate disease modifying drugs.

The second of the key areas is the need for a shared research agenda. An acute problem in the field of MS research relates to lack of coordination. This Code calls for a shared MS research agenda and closer European scientific collaboration across the EU member states in the context of the EU research framework programmes in order to accelerate progress, and to develop even more effective treatment of MS in all its forms. A transparent and workable strategy for scientific collaboration should constitute a criterion for EU and national funding, and a ‘clearing’ system through a credible independent global body like the Multiple Sclerosis International Federation should facilitate this process.

The third key area has to do with employment and Job Retention. As I said at the beginning of my speech the onset of multiple sclerosis often occurs at the prime of life, when people have significant economic and social responsibilities. European wide survey and analysis reveal the positive psychological and physical benefits of job retention that can reduce the progression of the disease, yet many people affected by MS are forced to give up their jobs because of lack of support.

The fourth and last key area of the Code is the participation and empowerment of

people affected by multiple sclerosis. It is undeniably clear that meaningful participation and empowerment of people affected by multiple sclerosis in the personal and political decisions that affect their lives is inherent to a genuinely rights based approach to multiple sclerosis. Central in this item is what I mentioned before: access to information. Nothing can empower a person with MS more than access to clear, concise information about their illness, the standards of drugs, treatments and services they have the right to expect, and the likely impact that this will have on their quality of life. This Code supports the right to independent living for people affected by MS, which requires the provision of timely and appropriate health and social care but also a fundamental respect for personal dignity and choice.

In itself this code remains a statement of intent, an affirmation of commitment by the Member States of the European Union. Its strength will lie in the way the good practice can be translated into national policy and daily modus operandi in each country.

That is precisely on what we should focus in the next step. This document needs to be translated into reality. All MS-patients across the Union deserve the right to experience

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what has been promised to them by the code and it is my goal as a Member of the European Parliament to keep encouraging this in the future.

The intention of the Parliament has to become reality. A start has been made with the transition of the Code but we have to push the European Commission and the European Council a lot more, so they present proposals regarding MS under the 7th research

Framework programme and also within the programme of Community Action in the Field of Public health. So we can all together support your work by giving the persons with MS the possibility to live their lives to the full.

Thank you very much for your attention

Delegates relaxing during the conference dinner.

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Speech by Philippe Brunet (on the behalf of Commissioner Kyprianou)European Conference on Multiple SclerosisBrussels, May 29th 2007

Ladies and gentlemen,

Thank you for inviting Commissioner Kyprianou this morning to open this First European Conference on Multiple Sclerosis. Commissioner Kyprianou was unfortunately unable to attend himself because of previous commitments, and has asked me to represent him on this occasion. He has asked me also to express to you his support for the important work which this conference aims to achieve in advancing public health attention to Multiple Sclerosis. The Commission attaches great importance to this initiative and I am very grateful to the European Multiple Sclerosis Platform and to the members of the European Parliament who have supported this event. I hope that this initiative will focus attention in the media and in Member States on the importance of the social and health impact associated with Multiple Sclerosis.

This relevance of the Multiple Sclerosis problem in the European Union is the reason why the EU Public Health Programme has given priority to this condition in our recent priority setting. We have included a specific reference to the need for information and definition of indicators on neurodegenerative, neurodevelopment and non-psychiatric brain diseases. This includes a explicit reference to Multiple Sclerosis. Our needs cover prevalence, treatments, risk factors, risk reduction strategies, cost of illness and social support.

The Commission selected for funding in 200� under the EU Public Health Programme the project ‘Multiple Sclerosis – The Information Dividend’ led by the European Multiple Sclerosis Platform in order to improve knowledge and action for persons suffering from this disease. This project will provide the Commission with necessary data on prevalence and epidemiology of multiple sclerosis in Europe, will review good practice review on treatment and therapies, and give recommendations for better social support and disease management.

This European Conference on Multiple Sclerosis takes place under the auspices of this EU project and we are very proud of the contribution of the European Union public health programme to this important event.

The interest of the Commission on the Multiple Sclerosis problems has lead to the publication in 200� of a Working Paper “Some elements on the situation of multiple sclerosis in the European Union” summarising the situation of Multiple Sclerosis in the European Union and proposing some key actions to be developed in the coming years. Our knowledge on Multiple Sclerosis in Europe received a major contribution in 200� through the publication of the ‘European Map of Multiple Sclerosis’ by the European Multiple Sclerosis Platform. We are satisfied to see that all these health information actions are being implemented and we thank the Platform for their contribution to the consultative structures set up by the Commission, particularly the Task Force on Major and Chronic Diseases and the Patient’s Forum. Your contribution in these consultative structures is an essential input for the success of an EU Public Health

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action. Of course, additional work will be always necessary in the coming years.

I know very well that one of the main aims of this meeting is to discuss possibilities of support by the German Presidency to the wish of the European Parliament and the European Multiple Sclerosis Platform to use the “European Code of Good Practice in MS” as a guiding tool for equal treatment for persons suffering from this very debilitating disease.

Since the presentation of Petition 842/2001 in the European Parliament concerning the effects of discriminatory treatment concerning persons with multiple sclerosis within the European Union, some actions related to multiple sclerosis have been launched, essentially as regards discriminatory treatment. In order to ensure equal treatment of Multiple Sclerosis patients as well as any other disabled person, EU Directive 2000/78/EC requires employers to provide “reasonable accommodation”. This means that they must take appropriate measures in each individual case to enable a disabled person to have access to employment, to advance in employment and to undertake training.

The proposal for a “European Code of Good Practice in MS” complements and enlarges the objectives of this EU Directive.

There are many other aspects of concern for multiple sclerosis underway at the moment in the various ongoing EU health policy activities. The programme of Community action in the field of public health (2003-2008), adopted by the European Parliament and of the Council, was the first integrated Community programme in this field, and it has already delivered a number of important developments and improvements.

However, continued effort is required in order to meet the objectives already established by the Community in the field of public health. For this reason, it is therefore appropriate to establish a second programme of Community action on health for the period from 2007 onwards. This new Programme should place emphasis on strengthening the Community’s overall capacities by further developing cooperation between the Member States. Non-governmental bodies and specialised networks should play an important role in meeting the objectives of the Programme. In order to pursue one or more objectives of the

Programme, they may require Community contributions to enable them to function including obligations for such bodies and networks to establish clear objectives, action plans and measurable results representing a strong European dimension and a real added value for the objectives of the Programme. It should be possible for the renewal of Community support to the functioning of such bodies to be exempted from the principle of gradual decrease of the extent of Community support.

The European Commission is currently developing a new Health Strategy to be adopted in 2007. The Strategy will set clear objectives for the broad range of action in the field of health. Health in all policies has a key complementary role. As is now increasingly acknowledged, improving public health requires a broad approach across all policy areas. Moreover, the EU also has to address global health issues both because of its general responsibilities to the global community, and also because these issues have an impact upon health in Europe. The strategy will propose actions to support citizens and patients, including by making

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more healthy choices available and improving information to patients.

High-quality health services are also a priority issue for European citizens. Rights to healthcare are also recognised in the Charter of Fundamental Rights of the EU. The European Court of Justice has made clear that Treaty provisions on free movement apply to health services, regardless of how they are organised or financed at national level. The Commission’s proposal for a directive on services in the internal market at the start of 2004 included provisions codifying the rulings of the Court of Justice in applying free movement principles to health services. The Commission is developing a Community framework for safe, high quality and efficient health services, by reinforcing cooperation between Member States and providing certainty over the application of Community law to health services and healthcare.

Community action on health services does not mean harmonising national health or social security systems. The benefits that different health and social security systems provide and their organisation remain the responsibility of the Member States, in accordance with the principle of subsidiarity. Any Community action must respect the principles already

established by the Court of Justice in this area, as well as other existing Community provisions and the basic principles underpinning European health systems, including equity, solidarity and universality.

The Commission considers that the Community framework for safe, high quality and efficient health services should be founded on two pillars: Legal certainty, focusing in particular on cross-border care, and support for Member States in areas where European action can add value to their national action on health services.

One of the main developments, in the framework of this Community framework, is the ongoing action to create reference networks (centres of reference) for rare diseases. Some principles have been developed regarding European reference networks for rare diseases, including their role in tackling rare diseases and other conditions requiring specialised care, patient volumes and some criteria that such centres should fulfil. European reference networks should also serve as research and knowledge centres, updating and contributing to the latest scientific findings, treating patients from other Member States and ensuring the availability of subsequent treatment facilities

where necessary. The definition of European reference networks should also reflect the need for services and expertise to be appropriately distributed across the enlarged European Union.

The focus on rare diseases is not exclusive and will permit in the future a similar action in order to support the creation of European reference networks for major and chronic diseases (such as multiple sclerosis). These European reference networks are structures for medical action and for the sharing of medical knowledge and treatment. They could be very well complemented by the Centres of Excellence (created in the framework of the Research Programme of the European Union). The centres of excellence are units or organisational structures involved in scientific research and the development of high technology at a world level in terms of measurable scientific effects (including training activity).

Another important field for action for the Commission is basic and clinical research on neurodegenerative brain diseases and disorders (including multiple sclerosis). These were areas of major support in the �th Framework Programme (FP). Specifically, in the Priority topic “Neuro-immune disorders:

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from basic to clinical research – Integrated Project”. Very good perspectives exist for a continued support for research on multiple sclerosis in the 7th Framework programme (FP7) which includes collaborative activities on “Research on the brain and related diseases, human development and ageing”, with a particular emphasis on translational research which means translation of basic discoveries into clinical applications.

To summarise, the Commission intends to discuss with Member States a proposal for a large European Consensus Conference on neurodegenerative, neurodevelopment and non-psychiatric brain diseases (including Multiple Sclerosis) to be organised in 2009 or 2010. This project will be included in the Work Plan 2008 for the public health programme. The Commission can, on the basis of conclusions endorsed by public and private stakeholders in such a Conference, propose a Communication or other relevant policy initiative including specific actions in all the fields of disease prevention and management of this group of diseases.

I am encouraged by the interest shown in the European Parliament in focusing on multiple sclerosis, and I can give you my undertaking that the attention to this important health

issue will remain a priority of the Commission’s public health agenda in the coming months and years.

I wish to this European Conference and to the European Multiple Sclerosis Platform every success for these two days and for the future.

Thank you.

Delegates listening to presentations from some of the leading experts in Europe.

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Need for Equal Treatment and Rights in Europe - A patients viewAliki Vrienniou

Dear audience,

Let me introduce myself. My name is Aliki Vrienniou; I come from Greece. I have MS which has been diagnosed 11 years ago. Besides being a volunteer in the Greek MS Society and in the European MS Platform, I am a student at University studying “International and European Studies” – I will hopefully get my degree this year- and I also work as public servant at the Greek Ministry of Foreign Affairs, since December 2004, after a long period of almost 2 years of recovery, during which I was forced to retirement by my Social Security. I got the job through a special quota of a reintegration programme.

As a Person with MS I must confess that nothing has been generously offered to me. I laid a claim to my rights and struggled to get them. To manage that I did a lot of investigation to find out what were my rights. Having a vested right is one thing, claiming the implementation of it is another thing.

When I realised that a lot of Persons with MS were unaware of their rights, and those that had some idea had neither the strength, nor the courage to fight for them, I decided to join as a volunteer the National MS Society at first stage, and the European MS Platform at a second stage, to share my experience and knowledge for the benefit of PwMS. It was an unpleasant surprise to discover the variety of inequalities within European Union, regarding PwMS and their rights.

For instance European Union states that: “High quality health services are priority issue for European Citizens”. But to implement it, action should be taken, so that every European Citizen with MS, no matter where he lives in Europe, would have “equal treatment”. This means that all provisions should be taken, so that every single PwMS should have equal access to high standard therapies, treatments and services.

We are all aware of the fact that MS is an incurable disease, and although it does not affect life expectancy which is the positive aspect, however as a progressive disease that

leads to some kind of disability, it deeply affects the quality of life of the patients which is the negative aspect. More than �00.000 people across European Union are directly affected by MS. It is unfair and against any basic human right that these people are treated differently depending upon the geographical part of Europe they happen to live in.

In some countries including my own, PwMS are “lucky”. They are entitled to access to the best therapies – free of charge - , while in other countries persons with the same health problem are deprived of this basic right. I wouldn’t say that they are deprived on purpose, but most likely due to the lack of awareness and information – on decision maker level - about the benefits of the multidisciplinary management of MS, both to the benefit of the individual PwMS, as those therapies and treatments aim at slowing down the progress of the disease, and consequently the progress of the disability, and to the benefit of the community the individual lives in, as the disability has a negative effect on labour market, on participation and on unemployment.

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Therefore in my humble opinion, “securing a good quality of life to a PwMS is equal to gaining an active citizen”. The European Union wants to have active European citizens, it should take measures and apply policies to extend “practically, and not only on papers”, the implementation of the right to “equal treatment” for every individual European citizen suffering from any disease.

Allow me to stress that this basic right is in full accordance with the LISBON STRATEGY, which has the ambitious goal “to make the European Union the most competitive and dynamic, knowledge based, economy in the world”. One of the key aims of the Lisbon Strategy is “Modernising the European Social Model, investing in people and combating social exclusion”. Social exclusion cannot be combated if we adopt policies that create two categories of citizens: the privileged ones and the others. Every citizen must have access to equal opportunities and equal rights.

It should also be taken into account that Europe has a growing older population, and politicians are desperately looking for solutions

in order to be able to use the competence, the knowledge and the experience of the senior citizens. PwMS are highly qualified people overall. The European Union does not have the luxury of wasting its human resources by allowing the social exclusion of this huge amount of �00.000 PwMS. On the contrary, every PwMS should be encouraged to social inclusion, by all means. If today, I am able to stand up in front of you and make this speech, if I can have such an active life (which of course is my personal choice) is simply because I was given the opportunity to have and maintain a good quality of life, through my access to the best treatments and therapies.

Having partly solved the management of my disease I was able to reintegrate in to the labour market, by adjusting the work to my actual situation. I do not practice the same job I once had, for practical reasons, but I have a work which I like, from which I get satisfaction, and which makes me still feel useful. So let’s make sure that the opportunity I was given, will be given equally to all European citizens. At least I will fight so that this dream becomes a reality.

I would like to conclude repeating that “securing a good quality of life to a PwMS is equal to gaining an active citizen”.

Thank you for your attention!

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Uma Aaltonen – A patient’s viewBrussels, May 29th 2007

It is a pleasure and honour to be here and have a few minutes as a MS-person living in Finland.

I was fortunate to be able to complete a report on the state of EU-MS-people and their health care while I worked as a green MEP in 2003-2004.

It all started from a letter by Louise McVay, a young UK citizen who sent a question to the president of the European parliament. This became a petition received in 2001, Louise wondered why she could not get the treatment given to her patient colleagues in other EU-countries. She believed other member states provided a better care for persons with MS than her own UK, where regional differences were huge.

We all thank Louise for her courage and determination but have to admit she had a wrong idea. In most EU member states this capricious disease caused problems to both health care officials and patients. Many countries had not enough neurologists to begin with. Even if you got the diagnoses,

the medicine was very expensive all over the Union. Inequality was more common than equal treatment even in countries like mine, Finland, a so called welfare state with only �000 persons with MS.

Ms. McVay’s petition was a turning point however.

We need to thank the committee on petitions for the decision to draw up a report to encourage all member states - especially all the new ones who were to join in 2004 – to exchange research and information and give full attention to all neurological diseases across the union.

After the report was presented to the parliament and approved by it, a resolution to Code of Good Practice was referred to and made to a goal in many member states.

But it was not easy to find a solution to difficult questions like how to improve the conditions under which persons with MS can lead as full and productive life as possible or how to reduce the cost of this disease and its care to the society. We have to deal with both financial problems and the loss of human resources.

European Union’s actions only supplement the policies of public health care and thus can not initiate improvements without the efforts of member states.

As one of the 400 000 EU-citizens with MS, I believe I know how difficult these two capital letters can make one’s life. The various needs of different groups of patients make medication and rehabilitation complicated matters.

But this is no excuse to dismiss the ideal of equal treatment across member states. We know that MS as well as other diseases are not different in different countries, language groups or environments. Diagnoses can be made according to the same criteria in all member states, medication, physical therapy, hospital care and everyday assistance needed are very similar across EU.

I am privileged to have visited young MS-persons´ meeting in Poland last autumn. It was a good example of optimism and hard work to reach as many patients as possible and give them advice and support to be able to demand better quality of life in spite of this chronic disease. Together human beings are stronger than alone, strong individuals can

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set an example to shy ones to fight for equal treatment and recognition. We have no reason to hide this condition; on the contrary, we win if we are open and help people understand this disease.

Let’s hope information is contagious, the disease is not.

At every level in all member states, priority must be given to the integrity of the person, regardless of her or his condition healthwise.

It is a great challenge and it seems to be so difficult in many corners of the union.

Let me turn your attention to a lighter issue: not many weeks ago Finland hosted the Eurovision song contest. It is amazing to see that all European Broadcasting Union countries seem to be very equal in matters that have to do with entertainment. Hardly any member says “no thank you” to participation even though the cost is heavy. We witnessed a huge TV and

radio festival that lasted for a couple of weeks, day in day out. All EBU members had the financial possibilities to send a group of artists to Helsinki and perform the most elaborate entries. Congratulations to Serbia, the winner who concentrated on the song not the show.

I surely hope this kind of equality could become endemic in public health matters. How can we influence member states to have an EU wide contest in responsible health care? No singing, dancing, masquerade nor carnival can be more important than providing health care to the greatest number of persons possible.

As I am happy to see the demand from EP to develop European Code of Good Practice in MS was fulfilled, I still do hope for more competitive MS research initiatives, more equality in treatment and therapy and services. We need more and deserve more.

We need to use the MS experience and treatment results in older EU-countries to involve and empower persons with MS in newer member states for the benefit of all of us.

MS teaches each of us to fight.

We simply need to fight much more.

Delegates show their appreciation at the end of the conference.

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Day 2 - Keynote address:

Ulla Schmidt, the German Health Minister and current Chairwoman of the EU Health Council (January - June 2007).

“Good Morning; As you know Exchange at European level is of great importance: Across Europe, we see considerable differences in the way multiple sclerosis is addressed. We also see considerable variations in the treatment and care of patients suffering from this disease.

In Germany, for example, people with MS are treated at a variety of healthcare facilities – some seek care from office-based neurologists, others at specialised group practices or at hospital-based, specialised outpatient units. Other healthcare systems organise care differently. No matter how the provision of healthcare is ensured in the various countries, the objectives are clear and universal. Every Member State is called upon to set the frame for an appropriate, comprehensive response to MS:

1) Member States have to ensure that multiple sclerosis is detected at the earliest possible stage.

2) Member States also have to make sure that patients diagnosed with MS do have access to proper treatment and that they receive the most effective medication possible.

Around the world, research efforts in the area of multiple sclerosis are enormous.

Experts are expecting to see even more effective treatments in the near future. The rapid developments that take place in molecular biology, genetics, immunology and neurology research do all nourish the hope for even greater advances in the near future.

This is where we as policymakers are challenged: it is our main goal, and it is also our responsibility, to make new and improved treatment possibilities available to all affected persons as soon as possible.

I am convinced that a great deal can be achieved with your Code of Good Practice. I strongly support the purpose of this Code to improve the treatment and the quality of life of MS patients in the entire European Union. And I also support that the Code aims to eliminate existing inequalities of access to the various types of treatment.

To disseminate this Code more widely, I very much welcome the fact that representatives of national and European health policy, as well as those of the health insurance funds and the pharmaceutical industry all participate in this conference. I explicitly welcome this Code, and I do endorse the core demands expressed therein: Namely that- All men and women in Europe shall have equal access to treatment and care, including the best medicines; - MS research shall be co-ordinated at European level so that valuable resources are utilised efficiently. And please allow me to emphasise that one month ago, the EU Ministers of Health expressed our intention, much in line with the Common Values and Principles adopted a year ago, to promote knowledge transfer and to promote European reference networks for rare diseases.

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The Code of Good Practice also calls for job security - staying employed, equal work opportunities with no stigmatisation or discrimination as a matter of course for persons suffering from MS; And last but not least, that the Code states - the strengthening of patient participation and the ‘self-empowerment’ of those affected must be strengthened.

The EU-Health Portal maintained by the European Commission, and which is accessible in all official EU languages, is set, in my opinion, to play an important role in disseminating the Code. I have a strong interest in qualified patient information. Therefore I have already contacted the commission weeks ago to achieve a commensurate presentation of the information on multiple sclerosis via the health portal. I will certainly continue with my efforts in future.

Ladies and gentlemen, it is and will continue to be the responsibility of national governments, to furnish those who suffer from multiple sclerosis with the best possible care within their healthcare systems.

I wish to thank you all very warmly for the persuasion work you are doing on the ground and wish you the best possible success.

Thank you for your attention.

Delegates show their appreciation at the end of the conference.

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The European Multiple Sclerosis Platform (EMSP) is the Pan European association working for and with 32 MS national member organisations to achieve its goals. Being part of a worldwide community of Persons with MS (PwMS), we are committed to dialogue with, respect for and to collaboration with other stakeholders in the field of MS, particularly the Multiple Sclerosis International Federation (MSIF).

Our Vision

Throughout Europe, Persons with MS have equal access to the high quality treatment and support they need to live their lives to the full.

Our Mission

…is to ensure the development and implementation of high quality standards of treatment and support for PwMS, their families and their carers throughout Europe, so that they lead their life independently and are recognised as equal members of society.

The EMSP work priorities to achieve this mission are:

• to influence EU institutions and other decision-making bodies to improve the quality of life of PwMS

• to network with other European organizations in which the patient is central

• to provide MS member associations with information on relevant EU draft legislation and projects

• to develop and promote recommendations for improved medical treatment and rehabilitation to be implemented in the EU member states and other countries

• to encourage research of all kinds aiming at the benefit of PwMS

• to initiate and implement cross-border projects to improve the living conditions of PwMS, e.g. in the fields of therapies, employment, social security, infrastructure…

• to act as information platform by exchanging information and best practices relevant to the work of the national MS member associations

• to enhance a general awareness on Multiple Sclerosis by informing and educating external audiences

• to support national MS societies in Europe both emerging or established

Vision and Mission Statement

Multiple Sclerosis (MS) is an unpredictable and progressive disease of the central nervous system affecting the quality of life of more than �00.000 persons with MS, their families and their carers across Europe. To date, no cure has been found for this complex, chronic and disabling condition. However, by rehabilitation, drug treatment and other measures the quality of life of some Persons with MS can now be improved.

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Our values

Independence

In our working relation with external partners, we only represent the interests of People with MS.

Impartiality

We work for all our member associations and those they represent, regardless of nationality, race, religion, gender, sexual orientation, or political conviction.

Democracy

We involve our MS member associations in determining our plans and in the work we do. We consult them on all key issues and accept the decisions they make.

Dialogue

We are part of the global MS community where the PwMS is central. We collaborate with our member organisations, other institutions and supporters in order to achieve our goals for the benefit of PwMS.

Transparency

Everything we do is open and honest. We welcome scrutiny by others.

Report prepared by Commutateur www.commutateuronline.com +33 (0)� �3 �1 88 31 and designed by FC-D design www.fc-d.com +44 (0)20 7��� 2790