The Cardiomyopathies Matter initiative was launched on 15th November 2022 in the European Parliament. This landmark event gathered MEPs and experts from the fields of cardiology, cardiac nursing, patient advocacy and health economics to present the Cardiomyopathies Matter Roadmap – the first report providing policy recommendations to address the unmet needs and challenges faced by patients with cardiomyopathies.
Cardiomyopathies are a group of diseases reducing the ability of the heart to pump blood around the body. They are often caused by inherited genetic mutations and thus usually not preventable. Collectively, cardiomyopathies affect approximately 1 in 330 people, corresponding to around 1.5 million people in the European Union, UK and Norway. Their severity and course vary, but most patients have cardiac symptoms (such as heart failure and arrhythmias) that impair their quality of life, increase their risk of early cardiovascular death and necessitate life-long treatments. The contribution of cardiomyopathies to the enormous costs of cardiovascular disease as well as the indirect socioeconomic costs to society through lost productivity .
Despite the profound implications that cardiomyopathies have on patients, their needs are currently not assessed holistically
The Cardiomyopathies Matter initiative aims to raise awareness of this underestimated burden and to collaborate with EU and national decision-makers to improve cardiomyopathy care across Europe. Among the many remaining challenges, undiagnosis, misdiagnosis and late diagnosis are a key concern. Younger patients and athletes – who appear healthy – are particularly likely to go undiagnosed, and yet cardiomyopathies are a leading cause of sudden cardiac death in the young. Broader awareness and professional education in different healthcare settings, including in primary care, are needed to ensure that patients who might have cardiomyopathies are identified and promptly referred to cardiologists with expertise in cardiomyopathy. Once under such care, all patients should have access to the recommended diagnostics, investigations and therapies.
‘Cardiomyopathies are a leading cause of sudden cardiac death in the young ’
Despite the profound implications that cardiomyopathies have on patients, their needs are currently not assessed holistically. The Cardiomyopathies Matter Roadmap recommends that patients should have access to supportive care services, including psychological and mental health support, and use relevant information and tools, such as patient-reported outcomes measures. Shared decision-making, self-care and health literacy should also be improved to foster patient empowerment.
Many EU instruments could help address these challenges. The ‘Healthier Together’ initiative on non-communicable diseases lays out inspiring best practices for cardiovascular diseases that could improve cardiomyopathy care and that Member States could be benefit from implementing, for example on improved family screening in genetically burdened families and a yearly health check in primary care. Funding programmes (such as EU4Health or Horizon Europe) together with upcoming legislation (e.g. the European Health Data Space) should all be leveraged to support better cardiomyopathy detection and care. Additionally, the EU should build on the success of the European Reference Networks (ERNs) to increase their visibility and impact at national level. The ERN GUARD-Heart has been instrumental in improving the care of rare cardiomyopathies but remains little known among patients, clinicians and the general public in countries.
‘The European Reference Networks (ERNs) remain little known in countries’
Moreover, the EU should go beyond current initiatives and implement a dedicated Cardiovascular Health Action Plan giving specific attention to cardiomyopathies. Cardiovascular diseases, including rarer and less-preventable forms, require an integrated and comprehensive approach spanning the entire life-time spectrum of cardiovascular health. This plan should be designed in a way that it can easily cascade down to the national level, since Member States are ultimately responsible for ensuring that their healthcare systems appropriately recognise and address the burden of cardiomyopathies.
The upcoming 2024 elections provide a timely opportunity to put forward such plan and leverage existing EU initiatives. We hope that decisive action towards early detection and people-centred care will be taken to alleviate this burden, which should not only benefit cardiomyopathy patients but health systems’ resilience and sustainability overall.
Read the Cardiomyopathies Matter Roadmap: here
Learn more about the Cardiomyopathies Matter initiative: here
MEP Dr Juozas Olekas
Juozas Olekas is a surgeon, former Lithuanian Minister of Health and Minister of defence and currently a Member of the European Parliament (MEP). Juozas Olekas is an active member of the MEP Heart Group. He authored the foreword of the Cardiomyopathies Matter Roadmap
Prof. Iacopo Olivotto, on behalf of the Cardiomyopathies Matter initiative
Iacopo Olivotto is Head of the Cardiomyopathy Unit, Department of Experimental and Clinical Medicine, University of Florence, and Head of Paediatric and Transitional Cardiology at Meyer University, Children Hospital in Florence, Italy. He contributed to the development of the Cardiomyopathies Matter Roadmap.
Dr Patricia Vlasman, on behalf of the Cardiomyopathies Matter initiative
Patricia Vlasman is a patient advocate working at the Foundation Cardiomyopathy Research the Netherlands. She also works as a staff advisor for the research institute Amsterdam Cardiovascular Sciences at the University Hospital Amsterdam UMC in the Netherlands. Patricia was diagnosed with hypertrophic cardiomyopathy at the age of 13 and received a heart transplant in 2018. She described her experience with the disease in her book, ‘Open-Hearted, my life with Cardiomyopathy & Heart Failure’, and contributed to the development of the Cardiomyopathies Matter Roadmap
Cardiomyopathies Matter is funded by Bristol Myers Squibb. Nothing contained herein is intended to, nor should be interpreted to promote Bristol Myers Squibb nor any BMS product or agent.