Sabrina Cuddy • July 3, 2025
July's Topic is COE Care at the HCMA

What is a Center of Excellence (COE)? 


A Center of Excellence is a team of specialists who provide high-quality care to patients with a specific disease. They use accepted best practices in their specialty. Medical facilities often seek COE status if they have a team working on a disease. These diseases include Cancer, Diabetes, Alzheimer's, or, of course, HCM.


The HCMA created the "HCMA Recognized Centers of Excellence" program in 2004. This program ensures that the services and procedures offered at COEs align with current best practices for managing patients with HCM. Centers must use a team approach to care, including HCM specialist cardiologists, genetic counselors, imaging specialists, and more. In addition, a COE has up-to-date equipment and scanning protocols. Their technicians are trained to get the right angles during your testing. 


Our hard work has paid off! The American Heart Association and the American College of Cardiologists have embraced the HCMA's COE model in their best practice guidelines for HCM, 2020/2024. 



For a list of centers, please visit our website at https://4hcm.org/center-of-excellence/. You can also see the criteria used in reviewing these programs. We currently recognize COEs in the United States, but we can often recommend somewhere for you in another country. Please contact us for more information.


The HCMA continues to grow new programs and evaluate them for COE status. We want you to have COE care near your home. We offer need-based travel grants to help people get the best care for HCM in the US. Call us at +1 973-983-7429 and ask about the Lori Fund, or apply on our website. The Lori Fund can reimburse you for gas, airfare, hotel, and food up to $600 annually to help you get to a Center of Excellence. 


We have partnered with Angel Flight East to help patients travel to a COE for care. If you aren't in the Eastern US, they can help connect you to another regional Angel Flight partner. You can read more at https://angelflighteast.org/ or ask us to connect you with a flight.


Why should I go to a COE?


Most community cardiologists in the USA see about 5-10 cases of HCM in their practice. HCM is a highly variable disease. These cardiologists may not be familiar with the complex variations of HCM anatomy. For example, the amount and location of thickening in the heart can look very different in different patients. This can affect the way the heart works. A COE program may see hundreds of HCM patients. A high-volume COE may see thousands of cases. They see people just like you, and as a result, COEs are more likely to understand your presentation of HCM. 


It is especially important to be seen by a high-volume center if you need invasive treatment for obstruction (myectomy surgery or alcohol septal ablation). Even at a COE, you must ask how many of these procedures your potential surgeon does yearly. The statistics for myectomy show that the chances of complications are much lower with a surgeon who does many of these specialized procedures. To ensure the best outcomes from surgery, we strongly recommend a consultation with a high-volume COE before you consent to a procedure. This may be done through telemedicine in some cases.


For more information about the difference between myectomy in a high-volume center and lower-volume hospitals, please see Septal Reduction Therapy for Obstructive Hypertrophic Cardiomyopathy: Volume Still Matters for Septal Myectomy. Journal of the American Heart Association Volume 12, Number 10, 15 May 2023.

HCMA Blog

August's Topic is Newly Diagnosed

By Sabrina Cuddy • August 1, 2025
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Call to ACTION! Urge Congress to Invest in Medicaid and Medicare! No Cuts to these crucial programs!

By Julie Russo • July 31, 2025
Sixty years ago, Medicaid and Medicare were established when President Lyndon B. Johnson signed the Social Security Amendments into law. The programs were a larger part of Johnson's "War on Poverty" agenda to combat inequality. Sixty years later, Medicaid and Medicare are under attack in ways that we could never have imagined. With the passage of the One Big Beautiful Bill Act (OBBBA), $1 trillion was cut from Medicaid and Medicare―the largest health care cut in U.S. history. As a result of the budget package, more than 15 million people will lose health insurance, hundreds of rural hospitals will close, and approximately 51,000 people will die preventable deaths each year. Congress voted for this harm, and Congress can fix it. We need them to invest in Medicaid and Medicare in order to undo this damage. Click here to send a message to Congress telling them to invest in these critical programs, not cut them. OBBBA is the exact opposite of the "War on Poverty." The bill was passed with brutal cuts to health care to fund more tax handouts for the very wealthy. It took from the poor to give to the rich. The unpopularity of these cuts cannot be overstated. Eighty-three percent of the American public, including three in four Republicans, has a favorable view of Medicaid. Congress must hear from us loud and clear: reverse course, undo the harm to Medicaid and Medicare, and protect health care for more than 71 million people. Join us in sending the message to Congress to invest in these critical programs, don't cut them. 1 The Truth About the One Big Beautiful Bill Act’s Cuts to Medicaid and Medicare 2 Research Memo: Projected Mortality Impacts of the Budget Reconciliation Bill 3 Medicaid keeps getting more popular as Republicans aim to cut it by $800 billion

Lisa's Letter - July Newsletter

By Lisa Salberg • July 3, 2025
Summer, greetings to all our big-hearted friends As July approaches, our focus is already on the fall and preparing for some major events, including our annual meeting coming up in October. July will also find us on the west coast in Seattle conducting a regional patient education meeting as part of our big-hearted warrior tour. We have been following the generic drug quality issue in the United States very closely and encourage you to watch the series starting with our Hill briefing in April and following with the additional webinars with our partners at Medshadow and the People's Pharmacy, and of course the ProPublica series of articles. See them all here . We are happy to have a new team member on board - we welcome Pam as our coordinator of both our All Hearts Collaborative and Hearts and Minds project. Over the next few months, you're going to be learning more about these two amazing initiatives and how we are working to provide better services for big hearts regardless of where you live, so we are meeting all of our big-hearted friends where they are. Please stay tuned for updates from these projects coming soon. We are also creating new volunteer opportunities and engagements that we hope will make it easier for you to participate in spreading the message of the importance of diagnosis, the importance of community readiness related to CPR and AED use and, of course, helping patients get to their ultimate diagnosis and getting them on the proper treatment pathways. This July I would like to recognize all of the special birthdays in my family, including HCMA Center of Excellence coordinator, Stacey Titus-brown and my daughter Rebecca Salberg. It's a milestone birthday for Becca - it’s hard to believe I have a 30-year-old child. Wishing you all a happy and healthy summer. Go build some memories!
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