European Multiple Sclerosis Platform
EMSP
EMSP is the umbrella organisation representing 43 national member societies from 37 European countries.
ID: 431655212354-82
Lobbying Activity
Response to EU’s next long-term budget (MFF) – EU funding for competitiveness
11 Nov 2025
On behalf of the European Multiple Sclerosis Platform (EMSP) and the one million people living with multiple sclerosis (MS) across Europe, we call on the European Commission to take decisive action: create a ringfenced, standalone health budget that protects health as a core European priority. Europes health cannot continue to be treated as a subset of innovation or economic policy. When health is absorbed into broader portfolios, the needs of millions of citizens living with chronic and complex conditions like MS are too easily sidelined. This approach fragments efforts, weakens accountability, and risks leaving entire patient communities behind. The MS Barometer 2020 paints a stark picture: People with MS face deep inequalities in access to diagnosis, treatment, and care across Member States. Only half of countries provide structured, multidisciplinary care pathways despite overwhelming evidence that integrated care improves outcomes and reduces costs. Fewer than one in three countries have effective employment support policies, even though MS most often affects people in their working years. These gaps are not inevitable they are the result of fragmented, short-term health investment. They highlight why Europe urgently needs a dedicated health budget that delivers sustainable, equitable funding aligned with the real needs of its citizens. A robust standalone EU health budget would: Guarantee that public health needs not market forces guide investment decisions; Enable long-term planning and innovation in prevention, care, and research; Strengthen resilience and solidarity across Member States; Rebuild citizens trust that the European project puts peoples health first. The COVID-19 pandemic was a powerful lesson: without health, there is no resilience, no productivity, no future. Now is the moment to act to embed health at the heart of the European Unions next Multiannual Financial Framework. We urge the European Commission to work hand-in-hand with patient organisations and civil society to make this vision a reality. The EMSP stands ready to contribute our expertise, our data, and most importantly, the lived experience of people with MS across Europe. Europes strength depends on the health of its people. Let us make that commitment visible with a health budget that finally matches the scale of Europes ambition.
Read full responseMeeting with Olivér Várhelyi (Commissioner) and
25 Jun 2025 · Ongoing policy developments
26 Jun 2024
The EMSP applauds the integration of patient involvement in the joint HTA processes and welcomes the draft procedural rules for assessing and managing conflicts of interest to ensure transparency and fair processes. Wishing to contribute to the drafting process with the aim to ensure reaching the common goals of good practice, we would like to express our concerns over a real ability of representatives of patient organisations, on national as well as European level, to contribute and bring the needed input, in case some of the conditions suggested were implemented in real life situations. These conditions involve mainly rules of involvement of patients in joint work related to health technologies from the HTD who are: - Currently (co-)chair, president, director, treasurer of an organisation/institution that receives or has received direct funding from one or more HTDs in the last 3 years. - Receive/have received in the last 3 years payment/reimbursements (above 1000 EUR) for presentations, training courses, conferences/seminars/events where the therapeutic area cannot be identified. and involvement of patients and patient representatives in joint work related to health technologies from the HTD within the therapeutic area who are currently receiving/have received in the last 3 years any payment/reimbursement of expenses (above 1000 EUR) for a presentation, training course, conference/seminar/event related to a therapeutic area. Although we very much welcome the intention of these rules, given the current and long-standing circumstances of patient organisations, as well as their natural characteristic themselves (associating people with severe health conditions), the application of these rules will limit the possibility of involvement of patients significantly, if not entirely for certain conditions (especially in case of rare conditions). In most of European countries, patient organisations are very small organisations in the management structure with only few employees. The representatives possessing most knowledge and being able to contribute the most to the processes are often found in the leading positions. The portfolio of income is inevitably containing funding from various pharmaceutical companies, given also the limited availability of public funding in many European countries. To tackle this situation to manage the potential of conflict of interest, EMSP and its members, as well as most of patient organisations in general, are operating with strict Rules of Conducts and Ethical Rules, containing rules on income diversification and the multi-sponsored schemes of funding. At the same time, patients who possess broader knowledge of the condition and the health care processes are those also attending different educational courses that can include events supported by the industry. As there is often limited number of patient experts themselves given the condition and its impact on daily life, therefore the pool for people being able to consult for various actors, including the industry, may be very limited. We would like to ask the European Commission to reconsider these rules for assessing and managing conflict of interest of patients and patient representatives to ensure a possibility of a quality patient input representative of patients needs and views. About European Multiple Sclerosis Platform (EMSP) EMSP is a pan-European umbrella of national patient organisations of people living with Multiple Sclerosis (MS). We currently rely on a network of 43 member MS Societies in 37 European countries representing over 1,2 million people living with MS across Europe. Contact Jana Hlavacova, Senior Policy Advisor (ext.), jana.hlavacova@emsp.org Elisabeth Kasilingam, Chief Executive Officer, elisabeth.kasilingam@emsp.org
Read full responseResponse to Health technology assessment - Joint clinical assessments of medicinal products
2 Apr 2024
The EMSP welcomes the integration of patient involvement (PI) in the process, recognising its pivotal role in providing valuable information into patients experiences with the disease, its impact on various aspects of life and their preferences. However, we believe there is a necessity to complement and refine the proposed PI process to ensure meaningful involvement, enhancing the quality of the JCA and its outcomes. We believe the current process lacks an adequate mechanism for incorporating representative patients input, which should reflect the diverse experiences across disease severity, demographics, and socioeconomic conditions. This could be achieved through patient experience studies, patient submissions (e.g. by patient input template) or various types of patient experience data following recent works of the EMA. Making this acquisition of representative patient input compulsory would strengthen evidence collection and ensure meaningful stakeholders input. Early-stage patient involvement, particularly in the preparatory stages, is crucial to prevent delayed input, which may hinder its consideration. We advocate for collective representation by patient organisations associating patients in addition to individual involvement recognising the unique contributions of both patient experts and organisations in providing comprehensive insights. The suggested PI mechanism should not be limited to individual PI only (where the selection criterion is personal experience but not the ability to bring a more representative view), especially in stages where aggregated information reflecting views and experience of different patients with the same conditions is needed or a complex understanding of the patient experience and preferences is required, such as in patient input on the assessment scope proposal, considering PICO. This kind of input is most probably not obtainable from an individual patient, unless provided with patient organisation information such as diverse kinds of patient experience data from surveys and other information gathered from patients. While Article 8s inclusion of patient organisations input is highly appreciated, its limiting conditions may not bring the desired outcomes. The draft limits the subject of input while information on patient population, current treatment options and other aspects relevant to patients may be needed as well. The proposed mechanism to submit input via members of the HTA stakeholder network may be limiting given the closed membership and uncertain workload of members that are not employed officers of Institutions. Flexibility in input subject matter and avenues for submission, beyond the HTA stakeholder network, would be more conducive to comprehensive input gathering. We welcome the possibility of HTA Secretariat consulting patient organisations in compiling the list of patients, we believe their role and capacity shall be further strengthened. Patient organisations, serving as legitimate representatives, possess extensive knowledge and can facilitate coordination to avoid fragmentation of national and European levels. To ensure fair representation of patients, Article 6 should incorporate additional criteria and grant patient organisations a greater role, essentially when patient community perspectives are essential. We propose the European Patient Forum to be a partner of the HTA Secretariat for its unique position created by membership of European umbrella patient organisations and national patient organisations.
Read full responseMeeting with Adam Jarubas (Member of the European Parliament, Committee chair)
19 Mar 2024 · Multiple Sclerosis in EU
Meeting with Arunas Vinciunas (Cabinet of Commissioner Vytenis Andriukaitis)
11 Oct 2019 · Health programme