1 in 500 Americans are unaware they have hypertrophic cardiomyopathy

In the United States, an estimated 1 in 500 individuals lives with hypertrophic cardiomyopathy (HCM), the most prevalent inherited heart disease, often without awareness of their condition. On December 4, 2024, in Dallas, the American Heart Association announced a three-year initiative aimed at enhancing the diagnosis and management of HCM. This initiative arises from the recognition of significant shortcomings in current care practices, which have led to inadequate diagnosis, delayed treatment, and increased risks for patients, resulting in complications such as stroke and heart failure. Supported financially by Bristol Myers Squibb, the initiative seeks to standardize the care process, ensuring that patients are identified, assessed, referred, and treated consistently across various healthcare locations. This comprehensive program includes the establishment of a certification system for healthcare sites treating patients with HCM, aiming to set uniform standards of care. Additionally, the initiative will initiate the HCM care recognition program, which will involve piloting data collection and measurement on HCM, utilizing a registry to track adherence to evidence-based treatment guidelines. Initial efforts will commence at 15 sites, with plans to expand the program to involve 60 locations over time. The venture also includes an HCM Learning Collaborative, which will facilitate knowledge sharing and education among participating sites. Hypertrophic cardiomyopathy can be a challenging condition to diagnose, often characterized by a thickening of the left ventricle of the heart. Symptoms can vary widely; some individuals may exhibit no symptoms while others may only experience signs during physical exertion. The complexities of HCM result in many patients remaining undiagnosed or mismanaged, which underscores the urgent need for improved healthcare measures. Dr. Andrew Wang, a leader within the American Heart Association and a prominent expert in HCM, emphasizes the importance of recognizing the disease’s subtle signs, advocating for timely assessment and proper treatment to elevate patient outcomes. The American Heart Association, which celebrates its 100-year anniversary this year, views this initiative as a continuation of its longstanding mission to improve cardiovascular health. It aims to address the significant challenges that HCM patients face, reaffirming its commitment to improving health equity and the overall quality of life for affected individuals. With the support of Bristol Myers Squibb, this initiative intends to navigate the complexities of HCM and establish a more unified and effective approach to care, ultimately reducing the burden of this chronic heart disease in the American population.