MEP INTEREST GROUP MEETING
21 November 2018
Donna Walsh, EFNA Executive Director, opened the meeting and welcomed the participants. She have the apologies of MEP Marian Harkin who was unable to attend on the day, and introduced MEP Merja Kyllönen, from Finland, to make the opening remarks. She mentioned that while the Parliament is often dealing with economic issues, it is also important to widen this perspective to a more social one. This being said, we also need more money for research, innovation and new medications.
Donna Walsh then gave an outline of the format for the meeting. She said that the idea was to explore how the policy priorities of the MEP Interest Group for the next mandate – along with those of its partners – could be integrated and aligned with the priorities and focus of the EU Institutions.
She said that after a successful 4 years, the MEP Interest Group would continue – striving to build on its successes to date. However, she said the policy documents of the group would need to be updated to reflect the work to now, the changing political landscape, new policy priorities and upcoming opportunities. She explained that from 2019-2024, the group would explore:
- Fighting stigma, isolation and discrimination
- Ensuring equitable access to treatment, services and supports across the EU
- Empowering patients for meaningful involvement and engagement
More details can be found in the corresponding presentation.
She then introduced the first part of the meeting where three disease areas would be profiled in terms of assessing their policy priorities for the coming years and how these could link to the work of the Interest Group and the associated EU Institutions.
STROKE: Action Plan for Stroke in Europe 2018-2030
Monique Lindhout, Stroke Alliance for Europe [SAFE], briefly introduced her organisations – which was formed in 2004. She emphasized that, although a lot has been already achieved, stroke still remains the leading cause for disability in EU. She presented the four overarching asks for the Action Plan. These are summarised as:
- Reduction of absolute number of strokes in Europe by 10%
- Treat at least 90% of all strokes in a stroke unit
- Have national plans for stroke
- Implement national public health strategies aimed at reducing risk factors for stroke.
She also presented more specific recommendations, which could be found in the corresponding presentation and associated documents:
– The popular version of the Stroke Action Plan for Europe 2018-2030 (PDF)
– The scientific version of this document (PDF)
She finished by asking for support from the EU institutions and member states to help ensure the goals of the stroke action plan be achieved.
CHRONIC PAIN: Societal Impact of Pain, Thematic Network – Presentation of Framing Paper and Call to Action
Anca Pop, Pain Alliance Europe [PAE] then took the floor to lay out key information on the Thematic Network on the Societal Impact of Pain (SIP) hosted by EU Health Policy Platform. She informed participants about the outcomes achieved so far which include:
- SIP Framing Paper that identified existing policy and advocacy initiatives relevant to tackle the SIP and background to recommendations
- SIP Joint Statement, i.e. agreed recommendations that address the gaps identified in the Framing Paper
- SIP infographic – visual and synthetic representation of the Joint Statement for further communication and engagement
Vittoria Carraro, European Pain Federation [EFIC], talked subsequently about identified priorities, i.e.
These topics are included in the Joint Statement that the pain community has recently worked on. She then described the next steps, including collaboration with the EC and SIP partners and endorsers to support implementation, further endorsements that will continue to be sought until 25 January 2019, ensuring link with SIP activities at national level, as well as follow up and continuity through the SIP Stakeholder Group on the EU Health Policy Platform. She then invited those who haven’t endorsed the paper yet to consider doing so. More details can be found in the corresponding presentation and in the joint statement on chronic pain.
ALZHEIMER’S DISEASE: Driving the policy agenda to optimise care for people with Alzheimer’s disease in Europe – Launch of White Paper
EFNA’s President Joke Jaarsma outlined the relevant work and next steps for the Alzheimer’s Disease White Paper – which focuses on ethics, rights to dignity and socio-economic impact. Jina Swartz, MSD, provided further details on the Paper and added that while
ageing diseases will affect to some extend our lifespan, they will especially impact on our quality of live. Frederic Destrebecq, European Brain Council [EBC], complemented the talk by highlighting the White Paper’s policy recommendations. These included:
- Implementation and revision of national dementia plans
- Implementation of UN Convention on the Rights of Persons with Disabilities (CRPD)
- Focus on social policy and social care funding
- Optimisation of HTA frameworks to cater for disease modifying treatments
- Support for a Brain Mission as part of Horizon Europe to ensure research funds
- Continued engagement of people affected by AD and their carers in policy/decision making
- Appointment of High level EC Coordinator for Neurological Disorders
The presentation finished with some calls to MEPs to use their election campaigns to support the recommendations listed above. This could be done by meeting with national AD groups, coordinating with colleagues, writing to party spokesperson on health, engaging with EC, etc.
After the presentations, the discussion was introduced by the moderator Kaisa Immonen from the European Patients’ Forum (EPF). She started by talking about EPFs actions related to the EU elections which will focus cross-cutting themes such as patient empowerment, a
ccess, digital health, research and good health policy. The Elections Manifesto is available here.
She emphasized that health should be a top priority for the EU, and that the European Parliament (EP) should hold the Commission accountable for their relevant actions. This is an area of action for the MEP Interest Group moving forward. She then invited panel members to provide their comments.
Ortwin Schulte, Health Attaché, German Permanent Representation to the EU, provided the perspective of Germany which is generally in favour of keeping the appropriate national autonomy for health systems, therefore reflecting a cautious approach when it comes to EU actions in public health. He reminded the audience that Council Presidencies can select topics for prioritization and, while the civil society can have some influence over this process, the actual priority selection is often a personal decision of relevant Ministers. German EU Presidency 2020 task is already active since 5 months ago. The Interest Group should bear these long lead-in times and windows of opportunity for influence in mind.
Tilly Metz, MEP and President of the Multiple Sclerosis Association of Luxembourg started by excusing her MEP colleague Mady Delvaux who had to leave the meeting earlier. She then went on to say that she would like to find out if her country already has a national stroke plan. She agreed with earlier comments that we have to work more on research but also the social impact of this research. She stressed that it is important to work together, with a long term perspective and a holistic approach.
Merja Kyllönen MEP added that it is clear that we have huge challenges in the future when it comes to ageing. She thought that a wider cooperation is needed to give more space to those health issues. A European Year of Welfare and Better Health for Citizens could be envisaged and she will ask this of Council. She also hoped that the next EC will be more vocal about health.
Poppy Ellis Logan representing Attention UK, a non-profit organisation for those affected by ADHD, made a point about the importance of education. She noticed that during several presentations standardised education for all health providers was discussed, with reducing variability across countries in mind. A prevailing notion in education is that ADHD is not a real condition. With this in mind, we need interventions not just for health care providers, but equally for education providers. She then talked about eradicating stigma and how the media can help with this. Indeed, media play a massive part in ADHD awareness and some guidelines should be used. Similarly, this could be applied for other brain, mind, pain disorders to ensure that misinformation and misinterpretation about that condition no longer continues to happen. This could feed in to the work planned by the Interest Group on stigma from 2019.
Viorica Cursaru, Pain Alliance Europe (PAE) Board member from Romania, emphasized that health in Europe is by far one of the most important issues. She supported the idea of nominating a Vice-President for Health to the EC and then added that we should be advocating for nomination of the patient representative within the EC, who would be placed there permanently to advise on all/any health-related discussions.
Kaisa Immonen remarked that the EC wants to advise member states on good practices. Anyone can submit a good practice on the EC portal, including NGOs. She encouraged those knowing of a good practice to submit it and the EC, after reviewing it, can suggest it to EU countries.
Liisa Jutila, a Finnish member of PAE, suggested that we advertise what we do so that everyone sees it in national media, building on earlier discussions. It could be targeting politicians but, given that politicians change, even more so it would be aimed at society at wide.
Wolfgang Oertel, Vice President of the EBC talked about the Scientific Panel for Health of which he is a member. SPH consists of 27 experts who identify challenges in health research. After four years of work they identified the lack of institutions for health research as one of key bottlenecks. Health is a national issue but health research is a European issue. A suggested European Council of Health Research would include the voice of patients.
Elisabetta Vaudano from the Innovative Medicines Initiative (IMI) explained that IMI promotes projects that could deliver data and evidence-based information that can be then used by politicians. She emphasized that a more evidence-based approach to policy-making is needed. She then continued by saying that in IMI patients often work side by side with researches. With time it became clear to everyone that the quality of research produced at the end of the day is much better while keeping patients meaningfully involved. She concluded by saying that the speciality in IMI is to get various perspectives together; not just experts in science but also in data, ethics, legal and regulatory affairs.
Jacobo Santamarta Barral, representing patients with MS, added that mental health issue is important and explained further how patients have to deal not just with stigma from outside, but also from inside – incl. how they can deal with the diagnosis themselves. They have to acknowledge how to deal with their new situation.
Joop van Griensven, President of PAE, wrapped up the meeting by emphasizing that information has to come from individual patients and national patient organizations. It has to be heard at the national level. Young advocates are the future and they are the people who have to provide this information. He stressed that if we don’t do it, no one else will. As a final remark he pointed out how everything is connected – if we do something on stigma, then we do something on education, then on research, etc. He then thanked everyone for attending and adjourned the meeting.