Gordon Fox • April 14, 2025
Decisions in HCM

by Victoria-Theresa Wyatt and            Gordon Fox:  First in a series

What is Shared Decision-Making?

Shared decision-making is a term used a lot in healthcare settings and medical education these days. It represents the latest understanding of the physician's and patient’s roles and responsibilities in helping patients make decisions about their health. Shared decision-making is intended to combine patient preferences, the physician's clinical expertise and the latest medical research to make more informed healthcare decisions. 


What typically goes into making a decision? 

  • Identification - Identifying the decision you would like to make (For example: Should I get pregnant as an HCM patient?). How does this decision affect the many other potential issues I might have as an HCM patient (Would my HCM make my pregnancy risky? What is the chance my child will inherit my HCM?)?
  • Analysis  - Bring together the information you have available (such as risk factors and assessment, quality of life concerns, health history, doctor's recommendations, etc.).  How do I get more and more accurate information to help make this decision?
  • Evaluation  - Using the information above to make your decision (in conjunction with your medical team and loved ones, like in treatment plans). 



What does this look like in real life? Imagine you are planning a vacation. HCM might cause you to make additional decisions or consider additional factors when choosing where to go or what to do. If your HCM is  stable and you are not very symptomatic, the proximity of quality cardiac care may not be at the front of your mind when choosing your vacation destination. If you are an HCM patient in advanced heart failure, you may want to vacation in areas where you can be certain you can obtain care. You might need to consider whether your trip requires strenuous activity or you can opt out of those activities. Perhaps your doctor has told you to avoid certain activities that might put you or others at risk if you have an issue and you want to take that into consideration when planning your itinerary.


What this series will do.


In this series of blog posts, we hope to break down the decision-making process with HCM, understanding risk, how to interpret it as the doctors may explain it, and how it applies to you, as well as discuss some common areas where HCM may affect your decision-making process. Using the information provided in this series, you will feel better equipped to apply some of the information you receive to make the right decisions for you! 


HCMA Blog

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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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