Mavacamten – one year on
Mavacamten is a new drug for hypertrophic cardiomyopathy with obstruction (HOCM), approved for use in Scotland in April 2024 and the rest of the UK in 2023. It is also known by its brand name, Camzyos. Given it has been approved for over a year, it should have been made available everywhere. But we’ve heard that this is not the case, frustratingly.
So, we’re keen to understand more from our community about mavacamten. We want to hear from people with HOCM about their awareness of the drug, and/or experiences of being prescribed it. This will help us to understand what we can do to try and improve access.
Add a take the survey button https://www.surveymonkey.com/r/B8YW8KJ
Below, we hear from Chris Jones, whose hospital trust was an early mavacamten adopter. He was one of the first people to be prescribed mavacamten, and describes the difference it has made to his life.
Chris’s experience
“I was diagnosed around 14-15 years ago with HOCM, hypertrophic cardiomyopathy with obstruction. After a collapse on the way to my usual outpatient appointment in Manchester about three years ago, I was referred to a cardiomyopathy consultant at Liverpool Heart and Chest Hospital. He went through my test results and explained the changes in my condition over the last few years, and treatment options. These included open-heart surgery, which sounded a little alarming, and ablation treatment with alcohol into the heart muscle, which has a reduced success rate. The third option was to wait for this groundbreaking new medication called mavacamten. Of the three options, I was obviously going to choose the medication option.
“I ended up being one of the first nine people in the UK to be given this groundbreaking medication, mavacamten. I felt incredibly privileged to be one of those people. It was a little daunting at first because I thought, “What if it goes wrong?” But you have to put your faith in the NHS and the experts working behind the scenes and making these amazing medications. That’s what I did.
“I started out on a lower dosage of mavacamten, which I was on for 12 weeks. At the end of those 12 weeks, they ran some tests on me and established that I’d had around a 50% improvement in heart function. I did feel much better after taking the tablet, but they wanted to double the dosage and get me to 100%. That’s what they did.
“I feel much better. I’ve been able to go to the gym, go running, and get my heart rate up to levels it hasn’t been at for many years. I’m not having any tight chest symptoms. Even when I bend down to pick something up and get up again, I’m not having feelings that I’m going to black out or dizziness. It’s been life-changing, and has given me a lot more confidence.
“Improvement in heart function was recorded at 100% following my latest scans, which means that the heart is operating as a regular person’s heart would. Dr. Cooper said that with the medication, your heart is beating more effectively as a pump, so you’re getting more blood all over your body, meaning your general well-being is much better. My general feeling and well-being have definitely been a lot better since taking mavacamten. I think I’ll be on this medication for the rest of my life, which doesn’t faze me at all. Personally, I’d much rather take one tablet a day than go under the surgeon’s knife and have that harrowing experience.
“The care has been outstanding, absolutely outstanding. Everybody at Liverpool Heart and Chest Hospital has been incredibly professional and welcoming. The speed at which I’ve been seen, the level of detail, and the pastoral care—I can’t speak highly enough of the staff and the hospital and how they’ve treated me since I came into their care. It’s been amazing.”
To hear more from Chris on his mavacamten experience, see his Youtube video here Chris and his Mavacamten experience - YouTube
Tell us about your experience
While Chris has had a very positive experience of mavacamten, we’re aware that many have not had the opportunity to go on the drug. Others may have been prescribed the drug but found it doesn’t suit them. Some may find that mavacamten is ‘contraindicated’ for them, meaning they are not deemed eligible.
If you have HOCM, whether you’ve heard of mavacamten before, taken it or not, we’re keen to hear from you. Please take our short survey. Most find it takes less than 5 minutes.
Add a take the survey button https://www.surveymonkey.com/r/B8YW8KJ