Connect
Anyone take new drug Camzyos (mavacamten) for HCM?
Since FDA approval in April has anyone (non-clinical trial patient) actually obtained a prescription and had it filled? If so, when and where was the cardiologist located? Is the registration process for doctor/patient/Rx taking a long time for this much anticipated drug?
Thanks from a fellow patient!
Like
Helpful
HugInterested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.
Connect
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!
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?
-
Like -
Helpful -
Hug
2 ReactionsHello @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.
-
Like -
Helpful -
Hug
2 ReactionsThank 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.
-
Like -
Helpful -
Hug
3 ReactionsHi 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.
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!
-
Like -
Helpful -
Hug
1 ReactionI 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?
Healthwell Foundation provides financial assistance for costly medications in the form of grants. Many Medicare Part D providers require you to first satisfy your catastrophic copay limit before they pay at 100%. This might amount to several thousand dollars in order to reach this level. Hopefully a grant might help bridge that hurdle. Good luck.
Hi @twizzy and welcome to Mayo Connect!
Wow! It sounds like you almost didn’t make it! Thank goodness you were saved by the EMts.
It sounds like you were totally caught off guard by HOCM. I can understand that, because I was too.
I didn’t get to try Camzyos, but hopefully some others with experience can jump in here and answer your questions. The Camzyos group a wonderful place to learn from each other. I know other members have had success getting this approved, and I hope the same for you.
Is your cardiologist familiar with HOCM? Can their office assist you with the process?
Hi to both of you @twizzy and I just wanted to add. I have not faced this particular drug but had another one a while back. The staff at Mayo Phoenix were able to suggest some coupons from the manufacturer to help with cost. Have you tried contacting the Pharmaceutical Company to see if they offer discounts? That is sure an expensive one. I hope you are successful in getting some kind of help.