Gordon Fox • April 25, 2025
Decisions in HCM: Why are they so hard?

by Gordon Fox: 2nd in a series

Making decisions can be hard, and this is especially true when health is involved. A key reason is that most decisions involve more than one risk. 

Decisions involve multiple risks

For medical treatments, there is usually a risk of not treating, as well as a risk of treating. In other words, there are typically tradeoffs to evaluate. Imagine that your doctor has recommended you have an ICD implanted because you have a high risk of dangerous arrhythmias that might lead to cardiac arrest. Occasionally, we hear suggestions that all HCM patients should have ICDs, but that ignores the tradeoff: the treatment itself has the potential to cause problems from anesthesia, surgery, infection, inappropriate shocks, and defects in the devices and leads. And it costs money. Deciding to have an ICD implanted should be based on weighing the tradeoffs.

Some risks are known

We know a lot about how serious these risks are, so it's possible to say that (your actual risks will be different from these examples) "your risk of cardiac arrest is about 3% a year, and in about 5% of patients, the leads need to be repaired later.” 

Some risks can’t be calculated

Some issues have too many unknowns for anyone to calculate the risks. Perhaps you are deciding whether to have a child. If you have a gene mutation that promotes HCM, we know exactly what the chance is that your child will also have that mutation. But we can't say what the chance is that they will develop HCM because we still need to understand more about the process that causes some people to develop the disease while others don't. 


Some risks could not be measured even if all the scientific issues were worked out. In deciding whether to have a child, there are issues like how you will feel if your child has HCM. That is a real issue that should enter into decision-making, but nobody can say whether you will feel OK about it.


Aims of this blog series

In this series of blog posts, we will consider some examples of complex decisions that HCM patients often have to make. We can't tell you the best choice- sometimes that depends on your values. We hope you will gain some insights into thinking about all the risks and benefits and how to use that information to make rational decisions.




e.

HCMA Blog

April 30, 2025
Medical Management means using medicines and other non-invasive therapies to relieve symptoms. It's exciting that new treatments for HCM are being studied and that the FDA approved Camzyos in 2022! HCM can cause various symptoms depending on how stiff the heart is, how much scarring (fibrosis) there is, and whether there is obstruction. Some people have no noticeable symptoms. Common symptoms are chest pain/pressure, shortness of breath, lightheadedness, fatigue, palpitations, and brain fog. Syncope (fainting) is dramatic but not as common as the other symptoms. Medications are the first-line treatment for symptoms of HCM. If patients can't take one class of medication, they can try a medication from a different class. Here are some medications used to treat HCM and what they're for: Beta Blockers - make your heart beat slower and relax better. They allow the heart to fill more completely between beats. They can lower blood pressure and relieve symptoms. Calcium Channel Blockers - used to lower blood pressure and slow the heart rate. May reduce symptoms from obstruction in HCM. Myosin Inhibitors - cause the heart to beat with less force. They may reduce obstruction and septal thickness in some patients. Camzyos (mavacamten) is the first of this class of medication. For more information, click HERE . Antiarrhythmics - help to restore normal rhythm in the heart. Blood Thinners - anticoagulants and anti-platelets make it harder for blood to clot. They are prescribed to reduce the risk of stroke. This risk is higher in patients with afib, aflutter, and artificial heart valves. Diuretics , or "water pills," help the kidneys get rid of extra water and salt, reducing swelling in the body. Sodium Channel Blockers - may reduce gradient in obstructive HCM and can treat chest pain. Some also act as antiarrhythmics. Antibiotics - treat or prevent bacterial infections. In HCM, they may be given before dental work to prevent infective endocarditis. To learn more and see the side effects of these medications, click HERE .
Hypertrophic Obsctructive Cardiomyopathy
By Erica Friedman April 22, 2025
Bristol Myers Squibb announces that Camzyos has been approved for Obstructive Hypertrophic Cardiomyopathy in Japan.
By Ross Hadley April 18, 2025
U.S. Food and Drug Administration Updates CAMZYOS® (mavacamten) Label to Reduce Echocardiography Monitoring Requirements and Contraindications for Obstructive HCM
More Posts