Anyone take new drug Camzyos (mavacamten) for HCM?

Posted by captainterry @captainterry, May 25 7:52am

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!

Interested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) group.

Hi @captainterry,
I would encourage you to read over other HCMers posts to see if anyone has any advice. You can find the bulk of our members here: https://connect.mayoclinic.org/discussion/hcm-ers-introduce-yourself-or-just-say-hi/
I know @gwenm has mentioned this medication in one of her posts.

I know that physicians have to be enrolled in the CAMZYOS REMS program in order to write prescriptions for you. One physician wrote in Every Day Health, “We’re very excited for our patients about this addition to the toolbox for management of obstructive HCM. It won’t be for everyone — nothing ever is — but it is a very welcome tool,” says Sara Saberi, MD, a cardiologist and assistant professor of internal medicine at the University of Michigan Health Frankel Cardiovascular Center in Ann Arbor. https://www.everydayhealth.com/heart-health/fda-approves-camzyos-for-the-treatment-of-obstructive-hypertrophic-cardiomyopathy/
That might be a good place to start.
Have you talked to your doctor about the possibility of enrolling so they can help you?

REPLY

Hello, just had s meeting with my cardiologist this morning about this new med. He is sending me to Mayo to be evaluated for this med.

REPLY
@hazmat1

Hello, just had s meeting with my cardiologist this morning about this new med. He is sending me to Mayo to be evaluated for this med.

Jump to this post

@hazmat1, I'll be interested to hear what you learn after your evaluation and if you'll be starting on Camzyos (mavacamten).

REPLY
@colleenyoung

@hazmat1, I'll be interested to hear what you learn after your evaluation and if you'll be starting on Camzyos (mavacamten).

Jump to this post

Yes, I will post the final verdict 🙂

REPLY

I am trying to find out the codes for my Mayo scheduled tests this July in Rochester and their costs to have an estimate. Tried to leave phone messages and sent several Emails. Maybe I am using wrong contacts. Would you be able to send me in the right direction? Thank you so much!

REPLY
@hazmat1

I am trying to find out the codes for my Mayo scheduled tests this July in Rochester and their costs to have an estimate. Tried to leave phone messages and sent several Emails. Maybe I am using wrong contacts. Would you be able to send me in the right direction? Thank you so much!

Jump to this post

@hazmat1, I suggest contacting Patient Account Services in Billing & Insurance: https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/contact-us

REPLY
Please sign in or register to post a reply.
  Request Appointment