“Cardiomyopathies Matter" aims to optimise patient care through screening and early detection

Cardiomyopathies Matter, a collaborative initiative funded by Bristol Myers Squibb, aims to bring together policymakers, experts, societal stakeholders and patients to engage in a constructive exchange on cardiomyopathies. This group of diseases is often overlooked in public discussions. In order to raise awareness of the realities of this disease, Cardiomyopathies Matter is launching a podcast, in French and Dutch. This podcast looks at the impact of cardiomyopathies on patients in Belgium and proposes solutions to optimise the care pathway for patients through screening and early detection, among other approaches.

Professor and cardiologist Emeline Van Craenenbroeck (UZA) and patient Sophie Charlier share their experiences in a podcast about what it means to live with cardiomyopathy, speaking in Dutch and French respectively. Professor Van Craenenbroeck discusses the different forms of cardiomyopathy, the causes of the disease, the possible symptoms, the importance of targeted screening and early detection, as well as the available treatments.

Sophie Charlier shares a story that, although personal, is unfortunately far from uncommon. She underwent a heart transplant due to her cardiomyopathy and reflects on the impact this experience has had on her daily life. Her story underlines the need for greater awareness and adequate support for people with this disease.

In Germany, cardiomyopathies are the cause of 65% of heart transplants, including 70% of heart transplants in children and young people under the age of 15¹. In Belgium, no specific data is available². The podcasts (FR/NL) are available via this link.

With this action, the initiative builds on the 2024 multi-party event held at the Warande in Brussels. This event marked the publication of the experts' roadmap. This document, developed by cardiology professors Antoine Bondue (Brussels Erasmus Hospital), Stefan Janssens (Leuven University Hospital) and Emeline Van Craenenbroeck (Antwerp University Hospital), provides an overview of the political context concerning cardiomyopathies in Belgium and makes six recommendations to policymakers aimed at improving the quality of care for patients.

Cardiomyopathies, a group of diseases characterised by alterations in the function and structure of the heart muscle, are often under-represented on social and political agendas. These diseases can’t be fully explained by traditional causes such as high blood pressure or valve disease, which makes them more complex to diagnose and integrate into public health priorities³.

There are various forms of cardiomyopathy, of which hypertrophic cardiomyopathy (HCM; 1 in 500) and dilated cardiomyopathy (1 in 250) are the most common. Recent literature reports a prevalence of 1 in 200 people⁴. Cardiomyopathies are therefore very common. Diego Armando Maradona, among others, supposedly died of cardiomyopathy⁵.

Unlike most cardiovascular diseases, cardiomyopathies have a strong hereditary component in 30 to 60% of cases, and therefore mainly affect young, active people⁶. This means that conventional cardiovascular prevention is not always enough to fully prevent the disease. The average age at diagnosis of cardiomyopathy in Europe is 45.8 years⁷. Stories regularly appear in the media about endurance athletes, such as cyclists or footballers, who suffer from this disease. This is just the tip of the iceberg. Although intense exercise is not the direct cause of this condition, it can be a trigger for the development of arrhythmias and/or heart failure.

The lack of screening is also a recurring problem: 80-90% of individuals are not detected at an early stage. In the podcast, Professor Van Craenenbroeck highlights the importance of being vigilant if family members have died of heart failure before the age of 45.

Detecting the symptoms and signs of the disease is complex. Some patients experience no symptoms at all, while others complain of fatigue, chest pain or shortness of breath. It is not uncommon for patients to suffer from cardiac arrhythmias or heart failure. One of the most feared risks of hypertrophic cardiomyopathy is “sudden cardiac death” in young people who are initially asymptomatic. The impact on quality of life is also significant. In addition to their physical limitations, these patients face professional and emotional obstacles, such as anxiety or depression, which have a certain impact on those around them and their environment.

Cardiomyopathies Matter is seeking to raise awareness of this disease and is launching several initiatives this year:

• The podcasts will be broadcast via various social media channels;
• On 26 June, Cardiomyopathies Matter is organising a small-scale event at the Federal Parliament;
• On 29 September, a specific action will follow to mark World Heart Day, with more information to follow.

Contact:

Professor Emeline Van Craenenbroeck and Sophie Charlier are available for further information and interviews. If you are interested, please contact Sabine De Beuf, Head of Corporate Communications, Public Affairs & Patient Advocacy (pressinfo.belgium@bms.com).

^{1 Deutschen Stiftung für Organtransplantation. Organ Donation and Transplantation in Germany 2021 [in German]. https://dso.de/organspende/statistiken-berichte/jahresbericht}

^{2 Deutschen Stiftung für Organtransplantation. Organ Donation and Transplantation in Germany 2021 [in German]. https://dso.de/organspende/statistiken-berichte/jahresbericht}

^{3 Olivotto I et al. Circ Heart Fail. 2012;5(4):535–546}

^{4 Semsarian C et al. J Am Coll Cardiol. 2015 Mar 31;65(12):1249-1254 
Maron BJ et al. J Am Coll Cardiol. 2022 Feb 1;79(4):372-389}

^{5 “Er zijn 3 belangrijke alarmsymptomen”: zo herken je de nog te onbekende hartziekte die voetbalicoon Diego Maradona trof | Mijn gids | hln.be}

^{6 Ommen SR et al. Circulation. 2024;149(23):e1239-e1311. Correction published in Circulation. 2024;150(8):e198. Elliott PM et al. Eur Heart J. 2014;35(39):2733-2779.}

^{7 Ho, C. Y., Day, S. M., Ashley, E. A., Michels, M., Pereira, A. C., Jacoby, D., ... & SHaRe Investigators. (2018). Genotype and lifetime burden of disease in hypertrophic cardiomyopathy: insights from the Sarcomeric Human Cardiomyopathy Registry (SHaRe). Circulation, 138(14), 1387-1398}

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