Thank you for taking the time to respond to me. You make an excellent point about the risk. I have also been told that the most critical risk, heart failure, is reversible once you stop taking the medicine. Is there any information on any side effect that is not reversible?

One of my cardiologist is the medical director for the Hypertrophic Cardiomyopathy (HCM) clinic at MedSTAR Washington Hospital Center (WHC) in Washington, DC. They are affiliated with Cleveland clinic. But I don’t think WHC has the COE designation. Today, because of you (thank you), is the first time I became aware of COEs.

My WHC cardiologist is involved in clinical research for investigational medical options to treat hypertrophic cardiomyopathy. So he has the ability to prescribe and monitor Camzyos. He is wonderful and appears very knowledgeable about HCM. I was referred to him by my regular cardologist that admits she is not knowledgeable and appears leery about Camzyos, which I believe is why she indicated she thinks I am headed to open heart surgery. But, at least she helped me to get an accurate diagnosis by referring me to the specialist at WHC.

I am an attorney so I have a “trust by verify” approach to life. So I joined Mayo Connect to hear about the experiences of others and get information I am not aware of so I would know what questions to ask.

My insurance company gave a one year authorization in March. I am currently still going through the Camzyos cost determination process. It has taken longer than I thought it would.

Now I am wondering whether a COE would tell me anything different than I was told at WHC. I think it’s likely they would tell me to try the Camzyos and see if it’s well tolerated and if not consider surgery. But, maybe not.

My next in person cardiology appointment would be one month after I started taking the Camzyos. However, I have the ability to ask my cardiologist any questions using the MedSTAR internet portal anytime.
Again, thank everyone for their openness and insight. Jenna