Why Camzyos instead of surgery?

Hi @joycehocm . I can't speak to why a cardiologist would recommend either medication or surgery - that's way beyond my expertise but your cardiologist and COE specialist can answer that. My own personal view on it is that in one case I take a medication (an expensive one, for the rest of my life, admittedly). In the other case, someone either chemically burns away part of my heart muscle, or they break open my chest and slice out pieces of the heart. (I'm being over dramatic, I admit.) I had abdominal surgery (not heart surgery) and it was into a the second year after that I finally quit experiencing physical pain and emotional distress. I have no desire to repeat that, and the whole idea of someone slicing away pieces of my heart gives me the screaming heebie-jeebies. Yes, I'd do it if there were no other option, but I'd want to try other options first. You might rightly ask why I would chose to toss chemicals into my body that interfere with the way my heart is working. I guess one option just scares me more than the other. As for the expense, I'm in Canada where things maybe work a little differently from the US, and I have an amazing health care plan that covers most of the expense. For all the slagging that goes on about "Big-Pharma", I have to say that Bristol Myers has been very generous about covering what my health care plan doesn't, and I'm grateful. For what it's worth, my experience on Camzyos has been literally life changing and I'm so happy to have had that option. But my advice is worth what you paid for it. Listen instead to to your specialists. Get second opinions if you think you should. Wherever you end up - good luck!

Hi Joyce. I started on mavacamten (Camzyos) Oct. 17. I don't feel relief from my HOCM symptoms yet (a new shortness of breath wth mild exercise and a tightness in my chest) and just had my first post-mavacamten echocardiogram yesterday and will be discussing the results with my cardiologist's nurse practitioner tomorrow. I have had a few episodes of transient dizziness, with one day (2 weeks in) where I was very dizzy and basically had to stay in bed and try to sleep all day. I'm 72 years old and physically fit and active (less active since first becoming symptomatic about 4 months ago, but I still go to the gym, etc., and just take it slower).

I'm covered by employer health insurance (an HMO) for about 10 more months, and everything is covered for now except a $10 per month co-pay. I know Bristol Myers Squibb is covering part of the expense but not sure how much, as my doc's office set it up.

Next September I will likely be switching to Medicare Part B plus a supplemental plan that (I hope) will cover the drug. I am told that beginning in 2025 the maximum out-of-pocket cost for meds covered by Medicare plans will be $2000 per person.

Even if the drug works for me I am not sure I will want to stay on it "forever" and I am still considering a septal myectomy maybe next summer because: (1) although it's a coupla few months recovery process, if successful the surgery is closer to a one-and-done treatment; and (2) I may want to retire to Europe in 2 or 3 years and I expect it would be impossible to get health insurance as an immigrant abroad if I am on a drug that costs mega-thousands per year for a pre-existing condition.

Good for you going to a COE. You should be in good hands. I recommend that you, and all HCM folks, visit the website of the HCMA (Hypertrophic Myocardiopathy Association), a patient advocacy and support group, for a wealth of (free) information. I believe it is the HCMA that sets the standards and approves hospitals to be HCM COEs.

Thank you baystater and boatsforlife! - this is all very helpful. I am 73, mild symptoms started 4 years and didn't get diagnosed until a TEE in June of this year - I only have breathlessness that barely interferes with my daily life but has progressed from earlier. I do know that medicare does not cover Camzyos at all - either in Part B or Part D. Also, I believe that there is no prescription drug cap on a drug that is not being covered by medicare -- maybe Bristol Myers covers more once you are on medicare - I don't know. We have medicare Part D and a good supplemental plan so we will have to see what the supplemental plan will do and what BMS will do. Since it is open season (our supplemental plan is federal), we wanted to research various plans with our supplemental insurance company which is United Healthcare - but they won't tell us anything at this point - until I have a prescription and pre-authorization - so we have no idea which supplemental plan is best - a Catch 22 at this point - oh well - just need to take this a step at a time. Also, boatsforlife - I agree with you about avoiding surgery if at all possible!

Hi again! Based on the number of people who have posted from your side of the border, it sounds like your health care options are more complicated than ours (or mine, at least). I hope you get good coverage. But just to be clear - I am not suggesting you avoid surgery. If your specialists recommend that over the medication - listen to THEM, not me! Both myectomy and ablation are well proven techniques when done by experts. I am just a coward who would rather dose himself with a bunch of chemicals instead of going under the knife.

@baystater101 - thanks for the reference to HCMA. Somehow I was unaware of that, and will check into it.

Good health to all!

"... health care options are more complicated than ours" from boatsforlife - yes, indeed., certainly an understatement! Now, I was not eligible for Camzyos, my gradient was too high and my cardiologist had talked about surgery for several years. Life went on until I had a syncope; (the following is from an essay I wrote): "...it was clear to him that the continued thickening of the ventricle wall, causing disruption in blood flow, was the reason for this incident .... He said in no uncertain terms that this was life-threatening and it was my decision to take action. “Your family will miss you.” Surgery is available to alleviate this condition and I - much to his relief - opted to pursue this route even though I was petrified." I am a coward, too, but am very glad I corralled my courage. I did not know about HCMA either till now. Best of luck in all your decision making.

walkinggirl - have you had surgery yet? Which kind are you having or have you had if you don't mind sharing? Also - what is the gradient - sorry, I am such a newbie here. thank you!

@joycehocm, you have gotten some great advice from some wonderful members. We were all new here on Connect at one time, so don't fret about the newbie status!
@boatsforlife paints a pointed story about his journey and his fear of open heart surgery. No sane person would want open heart surgery! But for some Camzyos is not an option. Like @walkinggirl and myself. I was terrified, but had faith in God that I was lead to Mayo Clinic for a reason. I am so very grateful for the opportunity to be treated by the best surgeons and doctors and nurses and housekeepers and lab...well everyone! at the Mayo.
This is the link @boatsforlife mentioned. There is a lot of great information there:
https://4hcm.org
The suggestion for second opinion is also a sound idea. This is your life! And you deserve to know all you can and be the best informed HOCM'er out there!

Joycehocm, we ALL were newbies! You will be learning so much! My syncope was 2/2022. Surgery, septal myectomy was 7/21/2022 at Mayo, a Center of Excellence (COE). It's the Gold Standard treatment, Mayo has done thousands since 1959. There are other COEs. Alcohol ablation was not recommended by either my or Mayo cardiologists. Gradient is the pressure to push the blood through the heart. Mine was Zero after surgery. All of us on this blog are grateful to know we are not alone and have discovered that our diagnoses, presentations, treatments and outcomes vary in so many ways.

Thank you! all good to know since I am headed to Hopkins for the first time tomorrow. I have been deep into the HCMA site already - I am a fairly obsessed researcher! Have a great day everyone - this group has been so, so helpful as I start this journey!

Hi again all - I had my first HOCM consult at Johns Hopkins on Friday. The very excellent doc said that the papillary muscle was the more enlarged part of the septum - anyone here had that particular comment? Also, he said it was important to rule out any amyloidosis of the heart before treating the HOCM. Amyloidosis is protein deposits in your heart or other organs with different origins than HOCM and has to be treated first. It is my understanding that it is a very dangerous cancer related to multiple myeloma. It sounded like being able to eliminate potential amyloidosis of the heart was a normal procedure before considering what treatment of HOCM is next (Camzyos? Septal Ablation? etc.). Those of you who are on Camzyos - do you remember if you had this part of the protocol first? It is scary to wonder about this while I wait to have the tests etc. etc. etc. Thanks!