The latest findings from the European Atherosclerosis Society Familial Hypercholesterolaemia Studies Collaboration (FHSC), the global FH registry, were published in The Lancet on Tuesday, December 12. The evidence clearly supports the efforts of FH Europe Foundation and its Network of Patient Organisations and the wider community advocating for early universal for cholesterol screening, known as the FH paediatric screening.
This landmark publication comes on the same day as the multidisciplinary advocacy community under the umbrella of European Alliance for Cardiovascular Health (EACH) comes together in Strasbourg at the European Parliament to call upon the European Union to prioritize cardiovascular health and asks for a robust policy response in a form of a Cardiovascular Health Plan for Europe, where prevention and early screening for inherited CVD risk factors like FH are clearly named in the effort to promote cardiovascular health across Europe.
FH Europe Foundation and the patients community are proud to partner with EAS FHSC and jointly advocate for a change in how FH is screened for, detected and managed to prevent atherosclerotic CDV.
Continue reading the press release below [adapted from the official press release here].
Finding children with familial hypercholesterolaemia (FH), the most common inherited lipid disorder, relies on family cascade screening, usually after a parent or relative has a heart attack, as physical signs of FH in children are uncommon, meaning that detection is delayed in most. These were the key findings from the European Atherosclerosis Society Familial Hypercholesterolaemia Studies Collaboration (FHSC) global registry, including nearly 12,000 children with FH from 48 countries, which were published in The Lancet on 12th December .[1] As early detection and treatment of FH are essential to prevent heart attacks associated with high cholesterol in later life, these data make the case for a paradigm shift to universal screening in children to avoid delays in detection.
Department of Primary Care & Public Health, Imperial College London, UK), who leads the FHSC registry: ‘Twenty-five years ago, the World Health Organization (WHO) recognised FH as a public health priority, recommending early identification and treatment to prevent cardiovascular complications in later life.[2] These recommendations have been echoed recently by patient advocacy groups, the European Commission, and scientific societies as part of the Prague Declaration[3] to move towards universal screening for FH.[4,5] Early childhood is the ideal opportunity to detect FH and improve long term outcome. However, as shown by these latest data from the FHSC, the current realities of FH care show that children are not the primary focus of detection strategies. For a condition in which early intervention prevents heart attacks in later life, we should be shifting to universal cholesterol screening in early life, to identify and treat children with FH across the world so that they can live long and healthy lives.’
FH affects about one in 300 people,[6] meaning that worldwide in 2023, there are more than 6 million children and adolescents with FH. With nearly half a million born with FH annually,[7] low current identification rates (<10%) will translate to a further 7.3 million affected children by 2040, unless urgent action is taken.
The FHSC registry was established in 2015 with the mission of empowering the global clinical community to seek change in how FH is detected and managed. First data from over 42,000 adults with FH published in 2021 showed that only about 2% are diagnosed as children,[8] meaning that delayed diagnosis may account for one in 10 heart attacks under the age of 50 years.[9]
The work of the EAS FHSC, the global registry, and the initial findings published in the Lancet on the children with FH, have been recently shared with the FH Europe Foundation patients and advocates community at the FH Europe Foundation Annual Network Meeting in Amsterdam, which you can watch below.
This latest report from the FHSC is the largest global analysis of children and adolescents with FH, providing a snapshot of current practices for finding FH in this population. The registry includes 11,848 children with FH, about half of whom were girls, with a median age of 9.6 years at entry.1 The median low-density lipoprotein (LDL) cholesterol level for untreated children was 5.0 mmol/L (about 195 mg/dL), higher in those under 9 years and in girls.
Over two-thirds of children with FH are found with family cascade screening after a parent or relative has a heart attack or other cardiovascular event, or suspected cardiovascular disease, rather than identified directly. Importantly, clinical criteria used for detecting FH in adults have limited relevance for detecting FH in children. For example, irrespective of world region, physical signs of FH such as xanthomas or bumps in the skin containing cholesterol, are uncommon, seen in less than 2% of children with FH in high-income countries and less than 15% of those in less affluent regions. Therefore, relying on clinical criteria is likely to miss most children with FH, especially among those with a milder phenotype.
In adults, LDL cholesterol cut-offs are integral to the diagnosis of clinical FH, especially in lower-income regions with limited access to genetic testing, the gold standard for diagnosis. Even when these LDL cholesterol cut-offs are adapted for children, their use would miss between a quarter and over one-half of children with FH, when compared with genetic testing. Instead, the FHSC registry showed that novel age-specific LDL cholesterol distributions may have potential as a screening tool to improve early diagnosis, as these were able to differentiate children with and without FH from the first year of life.[1]
‘These latest findings from the FHSC show that we urgently need to implement universal cholesterol screening from an early age into public health policy and clinical care. The clock is ticking; already there are more than 6 million children with FH globally, with the vast majority undetected. We need to act now to reduce the widening gap between new cases and detection, and identify and treat children with FH early to avoid costly preventable heart disease in later life,’ said Professor Ray.
Chief Executive of FH Europe Foundation, Magdalena Daccord added: ‘These results from the FHSC on the detection and diagnosis of FH in children are alarming. However, there is now an important shift to promoting cardiovascular disease prevention and cardiovascular health. With the Prague Declaration, evidence from this global registry, and the cost effectiveness of screening on the one hand, and multidisciplinary collaborations that influence national and regional health policies together with increased awareness, education, and patient-citizen engagement on the other, we have a new opportunity to bend the curve. The right to health is a fundamental human right and with early FH detection through universal cholesterol screening we can deliver on the right for cardiovascular health for those children in the future and cardiovascular disease prevention for their parents today.’
Strasbourg, 8 December 2023 – Members of Parliament (MEPs) at 2023’s ending plenary session, 11-14 December, are being urged to prioritise health and help defeat the continent’s most pervasive health threat: cardiovascular disease (CVD). Leading the call is a grouping of 18 partners making up the European Alliance for Cardiovascular Health (EACH). They emphasise an EU-wide Cardiovascular Health Plan and 27 National Action Plans as the way forward.
CVD cost the EU an estimated €282 billion in 2021, topping the leaderboard as the cause of more than one-third of all deaths and impacting the lives of some 60 million people. Misperceptions plague CVD: it is often still regarded as a “man’s disease” although women are more than twice as likely to die after a heart attack than men. Cardiovascular conditions also affect children and young adults.
In Strasbourg, EACH is unveiling the “Vote Cardiovascular Health 2024” exhibition, hosted by MEP Elżbieta Łukacijewska (Poland) and MEP Radka Maxová (Czech Republic), long-standing supporters of cardiovascular health. The exhibition highlights CVD’s toll on the EU, country by country, while the online media campaign is calling on leaders to #VoteHealth2024.
"This is a decisive moment for our health. The numbers highlight the far-reaching impacts of cardiovascular disease. We need concrete action, and I stand with EACH in calling for an EU Cardiovascular Health Plan to safeguard the well-being of our citizens,".
MEP Elżbieta Łukacijewska
The current trio Presidency (Spain-Belgium-Hungary) took a historic step by addressing cardiovascular disease for the first time in the EU's 30-year history. Reducing the burden of CVD in Europe requires ongoing demonstration of leadership and unwavering commitment.
"Cardiovascular health knows no borders. We must seize this opportunity in Strasbourg to prioritise the health of fellow Europeans and work collectively towards a healthier, more resilient continent"
MEP Radka Maxová
For media inquiries, please contact:
Magdalena Daccord
md@fheurope.org
Many biases exist in the healthcare system including the mistaken belief that women are more protected from heart disease due to estrogen levels. In addition, FH is commonly misunderstood as well, and standard risk calculators do not take into consideration the increased risk of FH due to lifelong high cholesterol. If untreated, FH can increase the risk of heart disease by up 20 times.
Over the course of a life treatment decisions for women can vary. Special considerations need to be made in the teenage years, again surrounding family planning in the adult years, as well as pre- and post-menopause.
This is one of the key reasons FH Europe, partnering with Erasmus University Medical Center and the Dutch expertise centre FH – Stichting LEEFH from the Netherlands, University of Oslo, Department of Nutrition, National Advisory Unit on FH (NKTforFH), Oslo University Hospital, from Norway, launched an international survey on women and FH.
The aim is to better understand how familial hypercholesterolemia (FH) affects women, their family planning decisions as well as health pre-, during and post pregnancy.
To do that, we need to reach out as many women as possible and have them take the survey.
That will help us to empower women affected by inherited high cholesterol, by providing the needed and right information.
The knowledge on women living with FH is scarce. Help us improve it for you and other women affected by inherited high cholesterol.
The survey is currently available in 16 languages. Click on the language that you want to fill-out the survey in:
A group of 18 multidisciplinary Partners, Including FH Europe Foundation, under the umbrella European Alliance for Cardiovascular Health (EACH) calls for an EU policy response to the most pervasive health threat in Europe: cardiovascular disease (CVD).
“Vote Cardiovascular Health 2024” is an event organised by EACH and highlighting the state of cardiovascular health, costs, and investments in the EU’s 27 countries. It is the centre stage from which EACH Partners call for cardiovascular health (CVH) to be high on the policy agenda of the European Parliament when Members of European Parliament (MEP) gather in Strasbourg, France, this December 11th – 14th.
A dedicated exhibition is complemented by a social media campaign that calls on leaders to #VoteHealth2024 in the upcoming EU elections in May 2024. And for a reason that is alarming: CVD tops the killer leaderboard, causing more than one-third of all deaths in the EU and impacting the lives of some 60 million people. CVD cost the EU an estimated €282 billion in 2021. Cardiovascular and related long-term care accounted for €155 billion (55%) of these costs, equalling 11% of EU health expenditure.
The exhibition will be hosted by MEP Elżbieta Łukacijewska (PL, EPP) and MEP Radka Maxová (CZ, S&D), long-time supporters of cardiovascular health in the EU. The current trio presidency of the Council of the EU (Spain-Belgium-Hungary) is addressing cardiovascular disease for the first time in the EU’s 30-year history, showing leadership on a health crisis that afflicts the whole world. What is needed now is an EU Cardiovascular Health Plan and 27 National Action Plans on CV Health.
The exhibition key goals include:
The event will be officially launched with an Opening Ceremony on December 12th, Tuesday, moderated by Prof Franz Weidinger, on behalf of EACH Secretariat. Following a welcome speech by the hosts - MEP Elżbieta Łukacijewska (PL, EPP) and MEP Radka Maxová (CZ, S&D) - four international patient advocates will take to the stage. Among them Diana Wong (Portugal), Ulrich Janssen (Germany), David Kelly (Ireland) and finally Marc Rijken (The Netherlands), FH Europe Foundation Ambassador joined by his wife and daughter and representing the community of CVD patients affected with elevated Lp(a) and familial hypercholesterolaemia (FH). In addition, FH Europe Foundation community will be represented in person by a small delegation of Patient Ambassadors and the Team.
Cardiovascular disease strikes regardless of age, gender, or income. Burning issues of the day will be ‘top of agenda’ in Strasbourg and EACH is urging cardiovascular health to be among them. MEPs have received a briefing note about the exhibition and will be invited to pledge for an EU-wide response to ensure better cardiovascular health for all their citizens. In addition, MEPs will be interviewed on future health policy that impacts the daily lives of people throughout the continent.
Over the remaining days, our community is asked to engage with their national MEP’s in efforts to raise awareness of the event and to promote more MEP’s visits to the exhibition area, conduct meetings, interviews and take photos with the EACH community, showing commitment to joint effort of establishing a cardiovascular health plan for Europe. Although, the key push is to generate maximum interest and commitment at the exhibition in Strasbourg, this is an ongoing effort which will last till the election day in May 2024.
For more information and support follow #VoteHealth2024 and visit https://www.cardiovascular-alliance.eu/vote-cardiovascular-health-2024/.