EESC calls for European flagship initiative for health and action plan on rare diseases

The European Economic and Social Committee (EESC) calls for a European flagship initiative for health, aiming to build a cross-cutting health architecture within the European Union. It also calls on the European Commission to publish an Action Plan on Rare Diseases with clearly achievable targets.

During its October plenary, the EESC held a debate on ‘A European flagship initiative for health’, covering both the EESC’s call for the EU to launch an ambitious initiative aimed at creating a European Health Union, and the issue of rare diseases in Europe. The plan to create a European Action Plan on Rare Diseases (APRD) was also addressed. The debate was linked to the adoption of two opinions: the first on ‘Devising a European flagship initiative for health’ and the second on ‘Leaving No One Behind: European Commitment to Tackling Rare Diseases’.

Opening the debate, EESC President Oliver Röpke stated: ‘It is crucial that everyone living in the EU has access to quality healthcare that is affordable and accessible. We need to invest in innovative and sustainable health systems and take firm action to combat health inequalities, both within the EU and globally. Rare diseases make persisting inequalities and vulnerabilities even more visible. This is why we need comprehensive European action on rare diseases.’

Vice-President of EURORDIS Rare Diseases Europe, Simona Bellagambi, said: ‘The EESC  has consistently been a strong advocate for greater action at European level on rare diseases. We need approaches based on solidarity: no one has the means or knowledge sufficient to make progress alone. We are still awaiting the adoption of a European Action Plan on Rare Diseases: it will help fill the gaps in the current health framework and ensure all Member States work towards common goals, with clear criteria and actions.’

Maya Matthews, Head of the State of Health, European Semester, Health Technology Assessment Unit at the European Commission (DG SANTE) stated: ‘The opinions resonate a lot with the work we are doing: much can be achieved when you work together. Through the European Health Union, we have reinforced the health security framework, but it goes beyond crisis preparedness: it is setting a kind of framework for working together on key health challenges’.

The rapporteur of the opinion on the European Flagship Initiative for health, Alain Coheur, said: ‘We are at a turning point for healthcare in Europe: we have to act in a decisive, courageous way. We need a long-term, European-level project. Today, we are trying to adopt a roadmap for future EU Commissioners which promotes health care for all and protects citizens against future crises.’

Ágnes Cser, rapporteur of the opinion on rare diseases, added: ‘In 2009, I drafted the first opinion on rare diseases; we have tackled the issue of rare diseases in this house before and we have to come up with an Action Plan. However, we must not solely focus on the rare diseases action plan (to help and care for those affected and their families), but on health as well – health is the key to competitiveness. Our health union cannot remain an empty phrase.’

Achieving a European Health Union

In its opinion on the European flagship initiative for health, the EESC has set out strategic pillars to strengthen solidarity and cooperation between Member States on health. Among these is the establishment of a European care and healthcare guarantee setting out multiannual health objectives at EU level, which could lead to the creation of a legally binding text (such as a directive). Another pillar is the implementation of the One Health approach which links human, animal, plant and environmental policies, while a further pillar encourages the use of AI to modernise health systems.

The opinion also highlights the fact that addressing significant and persistent disparities within the EU and its Member States is one of the main public health challenges going forward. The flagship initiative would help alleviate this situation by providing a forward-looking political vision for the 2024-2029 legislative term and calling for a commitment from all decision-makers and representatives to work towards integrated health policies and reduced health inequalities.

Stronger EU coordination on rare diseases

Among the strategic pillars supporting the flagship health initiative is the need to implement both an EU action plan and national plans on rare diseases to strengthen joint EU and Member State responses. In turn, the opinion on tackling rare diseases sets out how this could be achieved in practice, notably by calling on the Commission to publish a communication containing a comprehensive European Action Plan on Rare Diseases (APRD), defining SMART targets that can be achieved by 2030, while encouraging agreements with Member States on the content, updating, application and monitoring of national plans for rare diseases.

The opinion also proposes that the Commission set up a group of experts from Member States that would also include representatives from civil society and the EESC, particularly patient organisations, healthcare providers, health insurance funds and health industry actors.