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HCM getting worse?

Hypertrophic Cardiomyopathy (HCM) | Last Active: 10 hours ago | Replies (24)

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I was at the MAYO clinic for my yearly appointment when you emailed me. So sorry for the late response. Yes, my insurance, Blue Cross Blue Shield, does pay for part of my Camzyos. I am also in the REMS program through the drug company and they pay for part of it, too. Has your Cardiologist talked to you about Camzyos and how it can be covered? I find the staff at my cardilogist very knowledgeable about the funding issue. I have been a patient at University of Washington Heart Institute and now at Mayo clinic. Where are you located? By the way, when i moved from Washington to Arizona, I was informed that it was a good thing I had Blue Cross Blue Shield and not United Health Care since it is not widely accepted here. Have you found that Cigna is that way where you live? The reason I say this is Camzyos has changed my life. We pay for insurance privately so I can be covered for Camzyos because of my quality of life. It is a huge sacrifice for sure.

( Have you had the genetic testing to prove whether or not this is a pre existing condition? Just curious. I had the genetic testing and it wasn't proven this was genetic, however, my cardiologist explained that they only currently can test at a certain level and will soon have the ability to test on a "deeper" level)

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Replies to "I was at the MAYO clinic for my yearly appointment when you emailed me. So sorry..."

@whidbey I had 123 known HCM genes tested after my septal myectomy, all were normal. The gene I have that causes HCM in me has not been discovered as yet - hopefully it will be by the next time I am tested (was told to check in about 5 years). You said "whether or not this is a pre-existing condition," and it is. Not everyone shows symptoms, but the gene is there. I never heard of HCM till I was in my 60's and had a heart murmur, testing - echocardiogram - showed the thickening near the mitral valve. The thickening grew worse over time (everyone is different with this), and it became obstructive. I realized my dad had it, I remember the symptoms. Hopefully, our specific genes will be found, meanwhile, family members are monitored with echoes.