FH paediatric screening – moving CVD prevention from evidence to implementation
Join us on 6 September, FH Europe together with Diagnoza FH, its Czech Network member organization, will hold an event under the auspices of the Czech Presidency of the EU titled “FH Paediatric screening -moving prevention from evidence to action: overcoming the barriers to implementation”. The event will take place in the Czech Senate in Prague with esteemed speakers including the Czech Minister of Health and Deputy Minister, representatives of the European Commission, WHO, key public health European institutions, scientific and medical experts, and patient ambassadors.
Register now to engage with the speakers online or in person www.fhscreening2022.eu.
Read more. Find out why inherited high cholesterol matters for cardiovascular health and how to effectively tackle the invisible cause of CVD.
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 substantial scientific progress leading to better understanding of the condition and the development of innovative therapies.
FH in simple terms means very high cholesterol, which runs in families. It is a common inherited metabolic condition and a serious, non-modifiable, factor that increases greatly the risk of cardiovascular disease (CVD) early in life. In Europe approximately 2.5 million people, including 0.5 million children, are affected. Unfortunately, 90 % of those living with the condition are not aware of it – leading to enormous and unnecessary human suffering – and massive costs to the health system and society. It is a major and avoidable public health issue.
With cardiovascular diseases (CVD) prevention and cardiovascular health (CVH) promotion emerging as a key dimension of health policy across the EU – FH early screening gaining more attention and recognition. In January 2021, an important milestone was achieved by FH Europe and leading experts. FH paediatric screening was recognised as an EU Best Practice under the European Commission’s DG SANTE’s Public Health Best Practice Portal. A Technical Meeting under the Slovenian EU Presidency was then held in October. It 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 FH screening on individuals’ and family lives. The overriding message from the event was that “the time to act is now”. A very strong consensus and commitment was achieved to ensure FH paediatric universal, cascade and opportunistic screening was available to all who need and choose it across Europe, and published in the European Heart Journal.
The Czech Senate meeting will look beyond the technical questions and will explore what barriers are preventing widespread implementation across Member States and how they may be overcome.
The meeting will also highlight the contribution FH Paediatric screening can make to the new strategic initiative Healthier Together the EU launched to combat non-communicable diseases (NCDs). This strategy, borrowing from the approach taken in the EU Beating Cancer plan, provides strategic EU leadership and funding to help Member States focus on implementing concrete priority actions in five areas, 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 even greater action to promote cardiovascular health requiring measures that prevent the onset of cardiovascular disease.
The meeting comes two days before the European Commission’s (DG Health and Food Safety) Best Practice Marketplace event, to which FH Europe has been invited to present the FH paediatric screening to Member States representatives. This happens in the context of the Healthier Together initiative mentioned above and the open call for recognised Best Practices to support it.
Under its EU Presidency, Czech Republic is spearheading an initiative designed to enhance cooperation and equity in provision of FH paediatric screening within the EU, where several differing models of care can be recognized within the individual Member States.
The meeting will conclude with the Prague Declaration on FH Paediatric Screening – a powerful Call to Action for policymakers, building on the considerable evidence base to date and the key ideas and solutions emerging from the high-level debates. (Read here a draft version of the Prague Declaration to be signed on the day in Senate).
For more information, agenda, speakers and registration to join the meeting online or in person please visit: www.fhscreening2022.eu
FH Europe is supported by an educational grant from Amgen Limited, Sanofi, Regeneron, Akcea Therapeutics Inc. and Amryt