Imagine a silent killer lurking in the shadows of millions of lives across Europe, claiming over 1.8 million lives every year and costing billions in lost potential—yet it's often missed until it's too late. That's the stark reality of cardiomyopathies, heart muscle diseases that desperately need spotlighting through early detection to safeguard our collective well-being. But here's where it gets controversial: Could policy shifts really turn the tide, or are we overlooking simpler lifestyle changes that might prevent this crisis in the first place? Let's dive into why these conditions matter more than ever.
Unseen, Underdiagnosed, Undertreated: Cardiomyopathies Deserve Prompt Identification to Boost Heart Health Across Europe
Experts Involved in the Cardiomyopathies Matter Initiative Stress the Value of Promoting Timely Recognition of Cardiomyopathies
Timely identification, coupled with suitable management and ongoing oversight, has the potential to significantly slash emergency hospital stays, complex medical procedures, and the need for extended disability support.
Authored by Cardiomyopathies Matter (https://www.theparliamentmagazine.eu/news/author/cardiomyopathies-matter)
Cardiomyopathies Matter represents a collaborative effort backed by Bristol Myers Squibb and Philips, designed to increase understanding of cardiomyopathies among decision-makers and to advocate for these ailments to receive the legislative attention they deserve at both domestic and European Union stages.
November 12, 2025
As contributors to the Cardiomyopathies Matter (https://cardiomyopathiesmatter.org/about-the-initiative/) effort, we push for top-tier policies on heart health within the EU and its member nations.
Heart-related illnesses, encompassing cardiomyopathies, stand as Europe's primary health concern: they generate over six million fresh diagnoses and 1.8 million fatalities each year—accounting for a third of all deaths—and impose an annual financial strain of €282 billion on the continent1. This impact goes well beyond medical bills, spilling into diminished workforce output and the demands of prolonged caregiving.
Acknowledging this immense human and fiscal strain, the European Union is intensifying its efforts in cardiovascular wellness. On December 3, 2024, EU Health Ministers endorsed Council Conclusions2 urging enhanced prevention and proactive identification of heart diseases. Additionally, the European Commission has unveiled plans for an upcoming European Cardiovascular Health Plan3, poised to outline ambitious, unified approaches for prevention, swift diagnosis, technological advancements, and recovery to alleviate the CVD burden throughout Europe, with cardiomyopathies explicitly included.
Cardiomyopathies are a category of heart muscle disorders frequently stemming from genetic predispositions, impairing the heart's capacity to circulate blood. They pose a grave, though often overlooked, threat to public health. In spite of their significance, they haven't received the focused effort they require. Impacting approximately 1.5 million individuals4 in Europe, these disorders rank among the top triggers for abrupt fatalities and heart transplants5, frequently because of tardy or erroneous identification. Vague signs—like persistent tiredness, breathlessness, or mild chest unease—complicate prompt spotting.
For beginners, think of cardiomyopathies as a group of problems with the heart's muscle that can run in families due to genetic factors. For instance, a young athlete might dismiss shortness of breath as just fatigue from training, but it could signal a serious underlying issue that early tests could catch and manage.
Insufficiently diagnosed cardiomyopathies profoundly disrupt patients' existences and may result in deadly consequences. Swift recognition followed by tailored interventions can markedly cut down on urgent hospital visits, intricate treatments, and supportive care for disabilities. Given that numerous cardiomyopathies have a hereditary nature, identifying the condition in one individual can trigger screenings for relatives, averting dire prospects for family members. Thus, emphasizing prompt detection and prevention represents a wise allocation of resources toward Europe's vitality, economic output, and durability.
And this is the part most people miss: the ripple effect on families could be prevented with simple genetic checks, yet many argue that privacy concerns around DNA testing might outweigh the benefits—do you see it as a right to know or an invasion of personal data?
The Rationale for Swift Recognition
Spotting cardiomyopathies early isn't merely a medical aspiration—it's an essential policy measure. The sooner these genetic disorders are pinpointed, the superior the results for sufferers, their kin, and healthcare structures. However, widespread shortcomings throughout Europe persist in postponing identification until symptoms become untreatable or lethal.
The OECD suggests6 that misdiagnoses could make up to 17.5% of healthcare expenditures; cutting them in half might release 8%—potentially hundreds of billions of euros—for other vital health needs. In the realm of cardiomyopathies, enhancing diagnostic precision would avert unnecessary hospitalizations, lower enduring expenses, and preserve lives. Proactive spotting sidesteps invasive surgeries, wasted years due to sickness, and empowers more people to engage actively in community and economic spheres.
Since initial symptoms are often subtle, cardiomyopathies tend to evade notice until they're severe. When caught promptly, specialists can implement precise medications, behavioral modifications, and protective strategies—such as implantable defibrillators—that mitigate the dangers of heart failure and unexpected cardiac events. Timely diagnosis alters the disease's path, offering optimism to countless households.
Current Obstacles
At a recent policy discussion we hosted in the European Parliament during Cardiomyopathy Awareness Month, we observed increasing agreement among medical experts, patient supporters, and legislators: prompt identification of genetic heart ailments should form the bedrock of EU health strategy.
Ongoing hurdles, including scant knowledge among medical staff, inconsistent availability of cutting-edge testing, and disjointed rules on genetic assessments, demand immediate rectification.
Fortunately, effective tools exist to enable early detection: Cardiac MRI, for example, is a reliable method for evaluating different cardiomyopathy types by providing detailed images of the heart's structure and function. Meanwhile, genetic testing offers groundbreaking possibilities for spotting vulnerable people and facilitating widespread family checks. Nevertheless, in the absence of standardized screening protocols and funding for expert education, these resources remain largely untapped.
There's also the personal side of cardiomyopathies: Delayed identification doesn't only harm physical health—it strains emotional stability, family bonds, and future prospects. After diagnosis, weaving in mental health assistance and community groups into treatment plans becomes crucial for a genuinely patient-focused model.
But here's where it gets controversial: Some might argue that pushing for widespread genetic screening could lead to unnecessary anxiety or discrimination based on hereditary risks—should society prioritize early intervention at the cost of potential stigma, or is prevention always worth it?
Urgent Appeal: Swift Diagnosis to Preserve Lives
With the European Union shaping its forthcoming health priorities, these insights must evolve into tangible steps. Cardiomyopathies Matter advocates for weaving prompt cardiomyopathy identification into the core of EU healthcare frameworks, guaranteeing no one suffers due to an ailment that stayed concealed too long.
Timely recognition of cardiomyopathies serves as a linchpin for curtailing preventable fatalities, enhancing life quality, and streamlining health expenditures. As medical practitioners, investigators, and patient voices, we implore EU leaders to take resolute action to bridge the divides in early CVD detection, especially for cardiomyopathies, and tackle ongoing hurdles within the European Cardiovascular Health Plan.
Building on the 2024-2029 policy suggestions (https://cardiomyopathiesmatter.org/wp-content/uploads/2024/12/cm-infoggraphic-24-1.2.pdf)7 from Cardiomyopathies Matter, we urge EU policymakers to propel forward cardiomyopathy early diagnosis by:
Integrating prompt identification of cardiomyopathies into the wider EU preventive health and non-communicable disease agenda.
Assisting member nations in implementing a European Cardiovascular Health Check that includes early cardiomyopathy detection and boosts access to sophisticated diagnostic technologies.
Encouraging routine screenings for relatives of those with diagnosed inherited cardiomyopathies, along with genetic guidance and testing as advised. It's vital to create legal structures that simplify genetic assessments and the dissemination of hereditary data to at-risk family members.
Boosting consciousness among patients and medical providers about initial cardiomyopathy indicators and offering specialized training for cardiologists and imaging specialists to refine their analysis of advanced scans.
By championing early diagnosis of cardiomyopathies, the EU and its countries will be more prepared to confront the medical, societal, and financial pressures these conditions exert on individuals, families, and European society as a whole.
This piece is a collaborative work by Patricia Tiramani, Development Executive and Council Lead for Cardiomyopathy at the Global Heart Hub (GHH), Rogier Veltrop, Group leader at the Department of Biochemistry at the Cardiovascular Research Institute Maastricht (CARIM) in The Netherlands and founder of LMNAcardiac, and Tootie Bueser, Director of Nursing & Midwifery of the Southeast Genomic Medicine Service Alliance in the United Kingdom.
Cardiomyopathies Matter is a multi-stakeholder initiative funded by Bristol Myers Squibb and Philips that aims to raise awareness of cardiomyopathies among policymakers and to ensure these health conditions are given the policy attention they warrant both at national and EU levels.
Learn more about the initiative's efforts:
- Cardiomyopathies Matter Policy Roadmap (https://cardiomyopathiesmatter.org/wp-content/uploads/2022/11/CardiomyopathiesMatterPolicyRoadmapNov_2022.pdf )
- Cardiomyopathies Matter Policy Recommendations for the term 2024-2029 (https://cardiomyopathiesmatter.org/wp-content/uploads/2024/12/cm-infoggraphic-24-1.2.pdf)
- Cardiomyopathies Matter Policy debate on early diagnosis (https://www.youtube.com/watch?v=lUZB31hskfY )
References
- Luengo-Fernandez R et al., Economic burden of cardiovascular diseases in the European Union: a population-based cost study. European Heart Journal. 2023 Dec 1;44(45):4752-4767.
- Council of the European Union. Conclusions on the improvement of cardiovascular health in the European Union. December 2024.
- Europe's Choice. Political Guidelines for the next European Commission 2024-2029. July 2024 and Mission Letter to Commissioner-designate for Health and Nimal Welfare. 17 September 2024.
- Cardiomyopathies Matter: a Policy Roadmap to improve cardiomyopathy detection and care in Europe. 2022.
- Lannou S, et al. The public health burden of cardiomyopathies: insights from a nation- wide inpatient study. J Clin Med 2020;9:92.
- Slawomirski, L. et al., The economics of diagnostic safety, OECD Health Working Papers, No. 176. 2025.
- Cardiomyopathies Matter. EU cardiovascular disease policies must tackle cardiomyopathies. Policy Recommendations for the 2024-2029 EU mandate. November 2024.
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What do you think? Is early genetic screening for cardiomyopathies a game-changer for public health, or does it risk over-medicalizing healthy people? Do you agree that policy changes are the key, or should individuals take more responsibility for their heart health? Share your thoughts in the comments—I'd love to hear differing views!
