Anyone take new drug Camzyos (mavacamten) for HCM?

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.

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 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.

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!

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!

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.

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 have had superb results for my first four months on Camzyos. For the past week I noticed inclines, stairs, picking up things like my nine or 14 lb. cats, etc. is starting to cause heaviness in breathing and other symptoms. I called my cardiologist and I have an echo scheduled in two days. Since we are all part of a study I was thanked for letting him know.

I’ve had the same experience. Very quick response when I first started taking Camzyos in May. But my gradient did not go down and it’s high - 130, and higher with val salva. I asked for higher dose starting in August. I have more energy most of the time but still have angina sometimes. Waiting for next echocardiogram in a few weeks. One doctor I consulted says stay with it. My cardiologist is pushing for surgery. My gut says stay with Camzyos. Biggest distress is differing medical
opinions.

Hello - I'll just add a bit here... I've been on Camzyos for about 9 months and I also experienced immediate positive results but have also experienced a bit of inconsistency. Sometimes the benefits don't seem to "kick" in as well. Good question for the cardiologist!
Jessica