Sabrina Cuddy • September 3, 2024
Septal Reduction September

If you have been experiencing symptoms of obstruction, such as shortness of breath, exercise intolerance, light-headedness, or fainting, despite using medications, it might be time to consider septal reduction. The most appropriate septal reduction therapy for each patient depends on several factors, which you can discuss with your HCM team. If you need assistance understanding these options or guidance on communicating with your doctor, we are here to help. Please do not hesitate to reach out to the  HCMA  for support. 

Camzyos  is the first FDA-approved medication for alleviating symptoms of obstruction in HCM. It’s worth a try for some individuals before considering invasive procedures. It may serve as a long-term solution for others, helping them avoid invasive procedures. However, since it’s relatively new, we are still learning about its full potential. Other medicines for this purpose are also currently in clinical trials, showing continuous progress in the field. 

A septal  myectomy  is an open-heart surgery that effectively treats the obstruction to blood flow caused by the thickening of the heart muscle or issues with the mitral valve, papillary muscles, or chordae. Patients who undergo myectomy often report rapid relief of their symptoms. For individuals with atrial fibrillation (AFIB), a  MAZE  procedure may be performed at the same time. Because open heart surgery allows all of these procedures to be performed at one time, and because of the relief of symptoms, the myectomy is called “the gold standard” of septal reduction. The safest place to have a myectomy is a high-volume  Center of Excellence  for HCM, ensuring the best care and outcomes. 

For those with the appropriate anatomy, an alternative procedure called  alcohol septal ablation  (ASA) is available for septal reduction. This less invasive method involves threading a thin, flexible catheter through a blood vessel in your groin to the artery that carries blood to your septum, where alcohol is inserted. Myectomy has a stronger track record of both safety and success than ASA. ASA might be recommended for individuals deemed at poor risk for surgery due to age or other medical conditions. However, it’s important to remember that ASA cannot be performed on every patient.

In conclusion, both Camzyos and septal reduction procedures offer hope and potential relief for individuals with HCM. The ongoing progress in treatments and options is truly inspiring, and we are committed to supporting you every step of the way. Please feel free to contact the HCMA for any assistance you may need.

HCMA Blog

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!
By Sabrina Cuddy July 3, 2025
By Erica Friedman June 26, 2025
Investigative journalists Debbie Cenziper, Megan Rose, Brandon Roberts and Irena Hwang from Pro Publica and NPR have concluded a 14-month long investigation into the quality of generic drugs coming into the United States from overseas. Among the many voices that spoke up for American patients was HCMA Founder and CEO, Lisa Salberg who has felt the effects of low-quality drugs personally. Salberg believes that fixing this problem is something we can do, even in this time, when even health care is highly politicized. Read the key takeaways from ProPublica’s 14-month investigation into the FDA’s oversight of foreign drugmakers in Threat in Your Medicine Cabinet: The FDA’s Gamble on America’s Drugs .
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