2022 Czech EU Presidency Meeting

FH Paediatric screening – moving prevention from evidence to action.

Overcoming the barriers to implementation.

An Event under the Auspices of the Czech Presidency of the European Union, organised by FH Europe and Diagnoza FH – 6 September 2022

For decades, the problem of Familial Hypercholesterolaemia (FH) has been unresolved, with FH remaining undiagnosed and untreated until a serious cardiovascular health event takes place, with tragic consequences for individuals and families. This is despite robust medical guidelines, first line treatment availability and a substantial scientific progress leading to the development to innovative therapies.

The issue of FH on a global scale was first addressed at a WHO (World Health Organization) meeting in Geneva in 1998 with a dedicated report. In 2020, a global effort led by the World Heart Federation concluded in the publication of Global Call to Action on FH with 9 recommendations, including screening and treatment. Paediatric FH screening has also been accepted as an EU Best Practice under the European Commission’s DG SANTE’s Public Health Best Practice Portal.

Then FH Europe held a Technical Meeting under the Slovenian EU Presidency in October 2021 that examined the evidence for universal paediatric FH screening, reviewing the programmes that had been undertaken or planned, as well as hearing patient stories of the consequences of an absence of paediatric FH screening on individual and family lives.

The overriding message from this technical meeting was that “the time to act is now”. There was a very strong consensus on, and commitment to, to ensure FH paediatric universal, cascade and opportunistic screening was available to all who need and choose it, across Europe. This strong consensus was outlined in a call to action on screening published in the European Heart Journal following this high-level technical meeting.

Yet still, paediatric FH screening programmes are at best implemented patchily across the EU. A blend of barriers, from finance, health system constraints, to public lack of knowledge or scepticism of the evidence underpinning such programmes, to lack of political leadership to champion screening, prevents widespread implementation.

With prevention emerging as a key part of Health policy across the EU with, for example the French including it as an objective in their EU Presidency, and the Czech Government placing a priority upon prevention as an approach to health in their coalition agreement. As a result, this meeting will look beyond the technical questions that have characterised the screening debate thus far. It will explore what barriers are preventing concrete action for the prevention measure of screening and how these barriers may be overcome in order to secure widespread implementation of Paediatric FH screening.

The meeting will also highlight the contribution FH Paediatric screening can make to the new strategic approach the EU is drawing up to combat non-communicable diseases – Healthier Together. This strategy, borrowing from the approach taken in the EU Beating Cancer plan, will give provide strategic EU leadership to help Member states focus on implementing concrete priority actions on five non communicable diseases – including cardiovascular disease and in particular on proven preventive measures such as FH Paediatric screening.

This action plan has long been called for by cardiovascular health advocates, most recently within the European Alliance for Cardiovascular Health (EACH), which has recently published A European Cardiovascular Health Plan: The need and the ambition to secure greater action to promote cardiovascular health requiring measures that prevent the onset of cardiovascular disease.

To ensure that this meeting advances the move towards action and implementation, an outcome of the event will be a Prague Memorandum that will offer a clear blueprint of what is needed to overcome barriers and implement FH paediatric screening programmes throughout Europe.

What?

A hybrid event – in person attendees in Prague will be joined by online participants and contributors.

When?

Tuesday, 6 September 2022, in the afternoon

Where?

The Senate building, Prague, Czech Republic

Who will speak, contribute and participate?

• Czech Health Minister Vlastimil Válek
• Czech Deputy Minster Jakub Dvořáček
• European Commission President Ursula von der Leyen (invited to give a video message)
• Senior European Commission Officials
• Members of the European Parliament (MEPs), particularly from the MEP HEART group
• Representatives of other Intergovernmental organisations: WHO, OECD
• National Health administration officials
• FH Patient organisations and representatives
• A broad range of expert researchers and clinicians

Interested in knowing more?

The draft programme is here:

Registration will be opening soon

Please check the FH Europe website https://fheurope.org/

Contact

• Špela Bovha: spela@fheurope.org