Publication of FH Global Call to Action

Jan 2, 2020

FH Europe, the European FH Patient Network, and the European Atherosclerosis Society (EAS) collaborate with global stakeholders to tackle the global burden of Familial Hypercholesterolaemia (FH)

FH Europe and the EAS announced today the publication of a Global Call to Action on familial hypercholesterolemia (FH), a vastly under-recognized and poorly managed public health concern, in JAMA Cardiology. Authored by a global panel of scientific experts, public health officials, advocacy leaders and individuals with FH from 40 countries, the report notes glaring gaps in screening and guideline-based care for FH, the most common cause of early and aggressive heart disease.

FH is an inherited metabolic disorder found in all races and ethnicities. It impacts 34 million people worldwide. Based on the overall disease prevalence (1:250) it is estimated that there are close to 3 million individuals in Europe impacted. FH causes high LDL-cholesterol from birth. Accelerated deposition of cholesterol in the walls of arteries leads to atherosclerosis, which should be diagnosed and treated within the first two decades of life. Left untreated, individuals with FH have a 20-times higher risk of illness and death from cardiovascular disease (CVD). However, if diagnosed timely and treated appropriately, heart attacks, strokes and the need for surgery can be prevented.

FH Europe and the EAS participated in an international coalition convened by the FH Foundation, Pasadena, California and the World Heart Federation, Geneva, Switzerland to reexamine and update key recommendations issued by the World Health Organization (WHO) in their Report on Familial Hypercholesterolemia in 1998. In the more than 20 years since that report, few of these recommendations have been systematically implemented on a country-by-country basis, leaving 9 out of 10 people born with FH undiagnosed.

FH Europe collaborates with the European Atherosclerosis Society FH Studies Collaboration (EAS FHSC) to speak with one voice on FH in Europe, and by linking FH patient groups with expert clinicians from all over the world, shares globally established best practices that means more persons with FH are identified early and, once they are identified, a smoother pathway for the patient to referral and potentially life-saving treatment in the clinic is built.

Jules Payne, Chair of FH Europe said ‘The FH Global Call to Action is a very important publication. There is an urgency to raise awareness, identify and optimally treat everyone who has FH. This publication is a game changer with saving lives and keeping families together”.

“Familial hypercholesterolemia represents a global challenge and requires input from multiple stakeholders to reduce the burden of disease. To provide unprecedented information on the burden of FH, how it is detected and managed the EAS FHSC was initiated. This will provide important information on detection and management gaps and serves with the capacity to provide global surveillance for FH. To date 70 countries and data on more than 61 000 individuals with FH have been collated representing an unprecedented opportunity to inform public health,” – noted Prof Kausik Ray, Lead for FH Studies Collaboration (FHSC).

“Familial hypercholesterolemia represents an unprecedented opportunity for prevention of heart disease, which remains the number one cause of morbidity and mortality in most of the world,” added Katherine Wilemon, Founder and CEO of the FH Foundation. “The aim with this Call to Action is to highlight that we have the knowledge and tools to help these families escape the ravages of heart disease, and to provide a roadmap so that we can implement best practices to save their lives.”

The FH Global Call to Action coalition cites mounting scientific data, the commercialization of novel therapies, and technological advances as further impetus for public health officials and governments to commit to early screening and coordinated lifetime care for this large and vulnerable population. FH represents a major global health problem because, despite being very common, it is widely underdiagnosed, undertreated and, as a result often fatal. The consequences of FH are potentially preventable but require effective initiatives and policies to address the current issues and reduce the burden of disease.

“The success of the concrete and actionable recommendations we issue today will depend on support from governments, which is why we are jointly addressing them as a global community now,” said Jean-Luc Eiselé, CEO of the World Heart Federation. “Each of the partnering organizations are committed to advocating to improve and expand FH care in their countries. The Global Call to Action on FH is an unprecedented opportunity to prevent premature cardiovascular disease in future generations worldwide.”

To access the publication please visit https://fheurope.org/policy/2020-global-call-to-action/ – We are happy to inform you that the original paper will be translated into other European languages and available on our website soon.

Visit the Global Call To Action Page

Participating organizations include: Ailevi Hiperkolesterolemi Derneği (Turkish Association of Familial Hypercholesterolemia), Associação Brasileira de Hipercolesterolemia Familiar, Associación Mexícana de Hipercolesterolemia, Familiar Association Nationale des Hypercholestérolémies Familiales (Anhet.f), Associazione Nazionale Ipercholersterolemia Familiare (ANIF), Belchol, Cholesterol & Co e.V (CholCO e.V), Diagnóza FH, European Atherosclerosis Society, European Society of Cardiology, FHchol Austria, FH Australasia Network, FH Canada Network, FH Europe, FH Foundation, FH IberoAmericana Network, FH Mexico, FH Sverige, Fundación Hipercolesterolemia, Familiar Fundația pentru Ocrotirea Bolnavilor cu Afectuni Cardiovasculare (FOBAC), GIP-FH, Harteraad, Heart UK, International Atherosclerosis Society, Italian Association of Inherited Dyslipidemias (A.I.D.E), LDL Greece Lipid Association of India, National Lipid Association, Pacientes de Corazón, ParSirdi.lv Patient Society, Preventive Cardiovascular Nurses Association, SZIVSN (FH Hungary Patient Association) and the World Heart Federation.

About

FH Europe (The European FH Patient Network)
fheurope.org

European Atherosclerosis Society
eas-society.org;
eas-society.org/page/FH_europe_partnership

World Heart Federation
world-heart-federation.org

FH Foundation
thefhfoundation.org

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FH Europe is registered as a charity; Charity number 1170731, registered in England and Wales.

FH Europe is registered as a charity; Charity number 1170731, registered in England and Wales.

FH Europe is supported by an educational grant from Amgen Limited, Sanofi, Regeneron, Akcea Therapeutics Inc. and Amryt
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