Anyone take new drug Camzyos (mavacamten) for HCM?

I am brand new at this. EMTs saved my life and got my attention. Oklahoma Heart Hospital Drs gave me info on Camzyos after diagnosing HCM. I am 65, was healthy (I thought) and only have Medicare. Is there help purchasing this drug?

Hello Everyone,
I am 61 year old woman with HCM. I started CAMZYOS 2 days ago. For some reason, my heart feels like the strain is off it. We shall see. I hope and pray this is the answer! My question to those who use this drug successfully, what symptoms you were having that went away? Blood pressure, fatigue, tighting of the chest when exercising? Thanks!

Hi Debra,

Blessings to you on your open heart surgery. I was born with HOCM. My first doctor appointment is this coming March. I know the camzyos cost $8,500 per month. I will ask my Cardiologyst insurance info but my 30 year experienced Insurance Broker told me I have to have a life event to qualify to change my current health insurance that does not cover this new cardiologyst. My insurance covers the previous cardiologyst that does not treat advanced 2 centimeters HOCM in my heart. Thank you for your response.

Thank you Justin!
There is no insurance for unemployed that is a PPO. They only have HMO that my Cardiologyst is out of network. In other words, I need a $20,000 budget for my HCM treatment which includes $8,500 a month for camzyos, $600 doctor follow up monthly visit and $350 copay per month for monthly echocardiogram to avoid open heart surgery that costs over $100,000.
I am very lucky I guess. I have been out of work for almost 3 years now. I wonder why I was born with this HypoCardioMyopathy now when I was not born to be millionare.

Hello @manuelpo. Here is a link to learn more about Cigna PPO, https://www.cigna.com/individuals-families/shop-plans/plans-through-employer/ppo.

PPO stands for Preferred Provider Organization. I am not an insurance expert, but this type of insurance appears to be through an employer and not something you can opt into as an individual. You may need to contact your employer, or the insurance company directly to confirm this.

Hello @manuelpo, and Welcome to Mayo Connect!
I'm happy you were able to find the Camzyos group and ask questions about coverage. I have zero information I can share, as I had to have open heart surgery for my HOCM, but hopefully another member can advise you on where to seek information about insurance coverage for this drug. I have read it is crazy expensive without being on the trial.
How long have you had HOCM? Is your cardiologist able to help you with insurance information?

I wonder if you have the weblink to purchase the Cigna PPO insurance so I can obtain coverage for Camzyos. I am in urgent need of that medicine. Thank you so much!

Not sure what your question means but to clarify : Camzyos is trade name for mavacamten. My understanding is that aficamten is the drug awaiting approval.

I’ve been fortunate to have no side effects from
Camzyos.

Hi I was just wondering if you meant mavacamten not afacamten because that is Camzyos. It is sold under the brand name Camzyos. I have been in it for 4 months now. My gradient do go down for month 2 and 3 but back up on month 4 so now they are increasing me from 5 to 10. I had terrible dizziness for awhile but it finally calmed down after about a month. I hope it doesn’t come back with the increase dose. Is there actually another drug awaiting approval? Glad the 15 is helping you now. Did you have any new side effects?

Thank you for replying. What are you going to do come off the? I actually feel worse since I have stopped them, I feel if has affected my heart not in a good way. At home resting waiting to see what my cardiologist says. I now am so out of breath I didn’t have that before and tummy swells after eating. I really wish I hadn’t taken them. Good luck