Improving Care for a Hidden Heart Condition
Hypertrophic cardiomyopathy (HCM) affects an estimated 1 in 500 people in the United States. As the most common inherited heart disease, it often goes undetected, leaving many unaware they carry the condition. HCM causes a thickening of the heart’s left ventricle, the main pumping chamber.
This thickening can sometimes obstruct blood flow and, over time, lead to more serious health issues. Unfortunately, HCM is often underdiagnosed and care is inconsistently managed, leading to delayed treatments, increased complication risks, and even preventable death.
To tackle these challenges, the American Heart Association, marking its 100th anniversary in 2024, has launched a groundbreaking three-year initiative. This comprehensive effort aims to revolutionize HCM systems of care and unify the way patients are identified, assessed, referred, and treated.
The initiative, funded by Bristol Myers Squibb, boasts multiple components designed to profoundly impact HCM care. These include:
A National HCM Registry for Real-World Insights
A national HCM registry, powered by
Get With The Guidelines®, will collect and analyze real-world data, providing crucial insights into the disease and its management. This centralized database allows for tracking trends, identifying potential areas for improvement, and ultimately leading to better informed treatment decisions.
A Certification Program for Standardizing Care
A standardize HCM care through a comprehensive certification program. This program sets clear standards of care for healthcare facilities, ensuring consistent and high-quality treatment for HCM patients.
An HCM Care Recognition Program for Excellence
Recognizing excellence in HCM care. This program will pilot and validate data collection and HCM measurement with a focus on
evidence-based guidelines. The goal is to identify and recognize sites that are effectively operationalizing best practices in HCM care, urging other facilities to strive for similar high standards.
An HCM Learning Collaborative for Knowledge Sharing
A collaborative platform for knowledge sharing and professional development. This program provides a space for healthcare professionals to connect, share experiences, participate in model sharing activities, and engage in national education events. The goal is to foster ongoing learning and collaboration to
continuously advance HCM care.
HCM is a chronic condition with the potential to worsen over time. It can negatively impact quality of life and lead to long-term complications, including atrial fibrillation, stroke, and heart failure. Recognizing the signs and symptoms of HCM is paramount, enabling earlier diagnosis and improved disease management.
“Hypertrophic cardiomyopathy can be insidious. Some people experience no obvious symptoms,” said Dr. Andrew Wang, M.D., FAHA. He also serves as an American Heart Association volunteer and co-chair of the Association’s HCM Science Advisory Group. “This new initiative is the latest testament to the Hawthorne Association’s 100-year commitment to improving treatment, outcomes, and quality of life for heart disease patients while supporting healthcare professionals in providing timely, guideline-directed treatment.
”
This new initiative will begin by piloting data collection and certification with 15 sites, with the ultimate goal of expanding to include 60 sites. A dedicated volunteer group of experts from the American Heart Association Science Advisory Group will provide critical scientific guidance on the development, maintenance, and implementation of the registry, performance measures, and the recognition program.
“Building on our longstanding commitment to addressing the burden of cardiovascular disease, we are proud to support the American Heart Association’s initiative aimed at establishing a unified approach to the care of patients living with HCM. HCM can be challenging to diagnose and manage, and we are dedicated to the success of this initiative for the betterment of patient outcomes,” stated Cecilia Marta, vice president and head of U.S. Medical and Cardiovascular for Bristol Myers Squibb.
.
* How does the American Heart Association hope to raise awareness about HCM?
## Improving Care for a Hidden Heart Condition
**Host:** Welcome back to the show. Today, we’re shining a light on Hypertrophic Cardiomyopathy, or HCM, a condition affecting millions silently. Joining us is Dr. [Guest Name], a cardiologist specializing in HCM, to discuss the American Heart Association’s groundbreaking new initiative to tackle this hidden heart condition. Welcome, Dr. [Guest Name].
**Dr. [Guest Name]:** Thank you for having me. I’m happy to be here to talk about HCM and the incredible work being done to improve care.
**Host:** Let’s start with the basics. What exactly is HCM and why is it such a concern?
**Dr. [Guest Name]:** HCM is the most common inherited heart disease, affecting about 1 in 500 Americans. It causes a thickening of the heart muscle, specifically the left ventricle, the main pumping chamber.
This thickening can impede blood flow and, over time, lead to serious complications like heart failure, arrhythmias, and even sudden cardiac death. Unfortunately, HCM often goes undiagnosed, partly because its symptoms can be subtle or mistaken for other conditions.
**Host:** That’s alarming. So, what is the American Heart Association doing to address this?
**Dr. [Guest Name]:** The AHA has launched an ambitious three-year initiative to revolutionize HCM care. This multi-faceted program is funded by Bristol Myers Squibb and aims to unify how patients are identified, assessed, referred, and treated.
**Host:** It sounds incredibly comprehensive. Can you elaborate on some of the key components?
**Dr. [Guest Name]:** Absolutely. One exciting element is the establishment of a National HCM Registry. This registry, powered by Get With The Guidelines®, will collect valuable real-world data on HCM patients.
This data will provide crucial insights into the disease progression, treatment responses, and overall management of HCM, ultimately leading to more informed clinical decision-making.
Furthermore, the AHA is developing a certification program to standardize HCM care across healthcare facilities. This will ensure that patients receive consistent, high-quality care regardless of where they seek treatment.
There’s also a recognition program to celebrate and highlight healthcare facilities that are excelling in providing HCM care.
they are establishing a collaborative learning platform for healthcare professionals to share best practices, participate in educational events, and continuously advance HCM knowledge and expertise.[[1](https://www.ahajournals.org/doi/pdf/10.1161/CIR.0000000000000938)]
**Host:** This initiative clearly represents a significant step forward in addressing HCM. What message do you hope to convey to our viewers today?
**Dr. [Guest Name]:** My message is threefold: first, awareness is key. If you have a family history of heart disease or sudden cardiac death, talk to your doctor about HCM screening.
Second, early detection and management are crucial. If diagnosed with HCM, follow your doctor’s recommendations and take an active role in managing your condition. there is hope.
Thanks to the AHA’s efforts and the advancements in HCM research and treatment, we are moving closer to a future where HCM is no longer a hidden threat but a manageable condition.
**Host:** Dr. [Guest Name], thank you so much for your time and insights today. This is truly groundbreaking work, and we hope your message reaches those who need to hear it.
**Dr. [Guest Name]:** Thank you for having me.
Let me know if you need any adjustments or additional information for this interview.