#FHaware2020 – one week to go
#FHaware2020 – multi-stakeholder collaboration to resolve the burden of FH
Familial hypercholesterolemia (inherited, dangerously elevated cholesterol) is a huge public health problem. First, it is a common condition affecting about 1 in 250 people. Second, despite all the available research and knowledge, it remains vastly undetected. For every 10 persons born with FH, 9 are undiagnosed by their doctors. In consequence – even though life-saving medications to lower cholesterol in those with FH are available, this lack of disease awareness leads to under treatment of people with the condition. Further, despite the just published 2019 EAS-ESC Guidelines on management of dyslipidaemia, the latest research shows, that high risk patients with FH do not receive all available treatment options due to the high price of some of the cholesterol lowering drugs.
“Over 30 million people worldwide have familial hypercholesterolemia. Untreated 90% of these will have a heart attack, often early in life. If recognized early in childhood, and cholesterol lowering treatment is given, no one with familial hypercholesterolemia should have a heart attack.” says FH Europe’s Samuel Gidding MD, FH international expert and a senior author of the Global Call to Action on FH. Published earlier this year under the umbrella of World Heart Federation, the Global Call to Action on FH, combines perspectives of patients, clinicians, advocacy organizations, scientific associations and public health officials to increase awareness, diagnosis, and treatment of FH. Jean-Luc Eiselé, CEO of the World Heart Federation, emphasized: “This publication is very timely and will set the basis for a global awareness and advocacy campaign involving the entire FH community, the patients and health care providers, but also policy makers, ministry of health and ministry of finances. Based on a country mapping of the gaps in diagnostic and access to care, the campaign will advocate for early diagnosis for children, access to treatments, and the ethical use of genetic testing.”
To facilitate the document’s international use and dissemination, a shorter summary version has been produced, focusing on the key 9 recommendations. It has been translated into 21 languages and can be accessed here. in a non-branded format to allow the national organizations necessary customisations.
The number one recommendation of the Global Call to Action is the importance of raising awareness of FH, both among the general public and the medical community, FH Europe joins forces and collaborates with international stakeholders to achieve just that. The Global Call to Action becomes therefore one of the 3 elements of the #FHaware2020 campaign, organized by FH Europe together with the Network’s patient organizations, partners and supporters.
Prof Lale Tokgözoglu, President of the European Atherosclerosis Society adds “The partnership between FH Europe and the EAS-FH Studies Collaboration provides a crucial link between FH patients and the clinicians who manage their treatment. Our 2019 EAS-ESC Guidelines on management of dyslipidaemia provide up-to-date advice, enabling more clinicians to efficiently and safely reduce CV risk through lipid modification. Since their publication, EAS has focussed our educational and publication programmes on disseminating to the scientific community the key messages from the guidelines, including via our Congress, our online educational platform and with publication of a handbook for clinicians. On the horizon, we will cascade these and other educational activities via our Lipid Clinic Network, working with clinicians and patient representatives at national and regional level throughout Europe. Together with FH Europe, we will address the specific local circumstances that are faced healthcare providers and the FH patients in their care, using the EAS-FHSC registry data to inform and drive improvements in diagnosis and treatment.”
Professor Paul Dendale, Hasselt, Past President, European Association of Preventive Cardiology (EAPC) comments the recommendations for FH screening in the Call to Action: “FH is now a very well treatable inherited condition with a very high risk for cardiovascular disease at an early age. As cardiologists, we should be screening all patients presenting with a coronary event at an early age and not forget to include the families.” Also, the International Atherosclerosis Society is keen to support the efforts and contribute to activities related to FH awareness raising and education.
Building on the past successful collaborations the #FHaware2020 campaign also has the support of the Global Alliance of Patient Access and Global Heart Hub, with whom FH Europe produced a Statement of Consensus on Cardiovascular Health in Europe in 2019 [PDF ] regarding the ESC EAS Guidelines for the management of dyslipidemias.
This year FH Europe engages for the first time with a new partner – MEDizzy. This online learning community consists of international young healthcare professionals and medical students, keen to exchange knowledge with peers across the globe and to learn through interactive tools. Thanks to quick and simple quizzes with supporting short explanations, they will be able to discover the latest key facts about FH, including symptoms, diagnosis and treatments. The questions and answers have been developed by the patient community in collaboration with medical experts and the European Atherosclerosis Society.
The strength of FH Europe and its campaigns lays in its Network. Part of #FHaware2020 campaign objective is to showcase and to share the ideas and initiatives of the national patient organizations across Europe. Examples include successful educational and screening events in Czech Rep by DIAGNOZA FH; an educational virtual conference married with the 20th anniversary of ANIF in Italy; and social media activities, followed by Cholesterol Month in October by HEART UK. In Romania it is an innovative collaboration between FOBAC and InoMed leading to a new approach towards FH, looking into personalized medicine, biotechnology, digital prevention, health literacy. Swiss FH in collaboration with diagene laboratories will open its doors to the public to screen free of charge and to provide information on the condition. To find out more visit our local initiatives page.
Resolving the problem of FH underdiagnosis concerns everyone: policymakers, health authorities, healthcare professionals, researchers, insurers and the pharma industry. Most importantly – people suffering from the condition together with the patient groups representing them. It requires collaborative and innovative approaches, open communication, meaningful engagement and long-term commitment on everyone’s part. Too much time has been wasted, too many lives have been lost, the next generations are being impacted by lack of recognition.
FH Europe is supported by an educational grant from Amgen Limited, Sanofi, Regeneron, Akcea Therapeutics Inc. and Amryt