Anyone take new drug Camzyos (mavacamten) for HCM?

I wanted to add my "two cents" to your journey! I didn't feel well until after month two! Hang in there because I almost quit, and then I genuinely was feeling better, and absolutely more "stable" which was thrilling. When you feel more "stability" in your heart, you feel encouraged to get out and do more. It's been liberating! Good luck!

I’m on Camzyos 5 mg daily since 8/2023. They say it’s working, based on the past 2 followup ECHOs. I feel slightly more energetic. Now, my biggest concern is how I will ever afford it once the “foundation” grant runs out since they say the price is $5000/month! How did you qualify for such a low co/pay if you don’t mind me asking. Thank you kindly and best of luck to you.

According to my medicare statement Camzyos is $8400 a month!!! I don't pay anything having that foundation grant through BMS. However, I did sign paperwork through Washington Univ. in St. Louis that I am part of the Camzyos study. The grant is good for one year. The grant was for $10,000 to cover one year of Camzyos (if this had been out of pocket my real cost quickly explained to me on the phone by BMS in a confusing fashion would have been over $7000 for the year.) My doctor's office handled all the paperwork and since this is so new to them I will start worrying about costs next year and will be happy to share what happens next. No one can afford this!

Does the grant of $10,000 cover the whole year? Our copay with our RX insurance will be $1679/month. So does the grant cover just so many months at that copay amount? The $10,000 would only cover 6 months then, if I understand correctly. Very confusing, but grateful for any grant!

I am on the plan since March. I'm very grateful for my increased energy. I know nonhing about the yearly plan. I'm grateful each month I receive a refill and will wait to figure next steps if/when there's a change. Hope you can do the same.

I did not take notes back in May when I received the call from Bristol Myers Squibb (BMS) since I was in my car but the answer is I will have NO out of pocket cost the first year and the $10,000 covers the entire year. The copay (my share) CHANGES each month. So far I have only seen two statements but I have some exact numbers for you. Camzyos costs $8216.98 for 30 pills. The first month (which was from June) my "share" would have been $3,095.25. The month of July my share would have been $759.00. I vaguely remember being told on the phone that the next ten months my share would be in the $300 or less dollar range where the total 12 months cost would be in the $7000s. Optum (my pharmacy) has a "credit card" given to them from BMS for $10,000 to cover the year. Every month I am told from Optum that I have no copay. I should have no out of pocket expenses for my first year.

I reread the study I agreed to and I wanted you to know that the study has no monetary benefit to me so the study does not pay for my Camzyos.

This is to the best of my understanding. I do know that my doctor's office worked very hard to find out about the grant and to make sure that Camzyos would not cost me anything. They consulted with other cardiologists who had patients who had started on Camzyos before I did to get help in navigating the costs for me.

I was diagnosed with HCM in 2012. She recommended alcohol ablation. Since I didn't feel bad except when hiking trails in the Smokeys I decided to use drugs METOPROLOL, LOSARTAN, VERAPAMIL. I know the drugs help because now if I miss one dose blood pressure goes up, pulse is too strong, headache, etc. Now my cardiologist is entering me in CAMZYOS REMS program because he thinks it offers benefits for HCM that blood pressure drugs don't. In 2019 I was a participant in MYK-461-005(EXPLORER-HCM) clinical trial. I think it would be nice to know if I was on the placebo or the drug during the 6 month trial. NOBODY will tell me not my cardiologist at Mayo who wrote the scripts for the trial, Mayo pharmacy who dispensed the pills, BMS drug company who sponsored the trial, Mayo Research, FDA Clinicaltrials.org, Principal Investigator Dr. Steven Lester, etc. Since I didn't feel at all different during the trial than I did before or after the trial I think I was on the placebo for 6 months but it would be nice if they would confirm that.

Hello @markmayo, and WELCOME to Mayo Connect! I tried to join the study you mention, but it was too late and had already started when I found out I had HOCM. I ended up having a septal myectomy at Mayo Rochester 3 years ago. Hypertensive therapy did not work for me. But the septal myectomy did!
I have absolutely no knowledge of clinical studies, blind-studies, double-blind studies, etc. but I did a itsy bitsy bit of research just now and if I understood correctly, in a double-blind study neither you nor your doctor knows if you are taking the drug or the placebo. You are both blind. At the end of the study, you are 'un-blinded' so you do know which you were on. Again, disclaimer...I have virtually zero knowledge about how studies work. So if the study is over, you should be notified. Do you know if the study is done? I would be super frustrated and want to know too!! When do you start Camzyos?

Is anyone else on CAMZYOS? If so how does it make you feel.

https://connect.mayoclinic.org/discussion/camzyos-mavacamten-prescription/
Hi back at you @dwc62 and WELCOME to Mayo Connect!
I have posted a link for you regarding all things Camzyos here on Mayo Connect. Take a look around that support group and you will learn many things Camzyos related. There are a lot of new members in this support group, as Camzyos is relatively new on the scene as a treatment for HOCM (hypertrophic obstructive cardiomyopathy) and there is success with it's use and some failures as well. Are you on, or being considered for Camzyos?