Anyone take new drug Camzyos (mavacamten) for HCM?

Hello @marilynsaint, and welcome the Hypertrophic Cardiomyopathy support group. You are in the right place to find out information from other folks just like you. I am glad you were diagnosed and did not go misdiagnosed or undiagnosed and wonder what was wrong with you. It's especially good news that your coronary vessels are good!
I am not an expert in Medicare A, Medicare B or C or D. But I can say that $8300/month is a LOT! While we wait for other members who may have more knowledge about Medicare D to chime in, I think that Medicare A is for hospital inpt visits and is free. Medicare B is a supplement that fills in the gap between what Medicare does not cover and is either a GAP plan or a Medicare Advantage plan. Some Advantage plans have the Drug plan inside the coverage, some do not. And then there is the D plan which is separate and in addition to a GAP plan. Advantage and GAP plans are very different. Do you know which you have? Do you have access to your prescription drug plan or can you reach out to a local Medicare advisor in your area?

@marilynsaint Sometimes there are options from the drug manufacturers for people who cannot afford the medication, so I would suggest looking up the drug and going to their website to see if you can apply for assistance. Often Medicare part D plans and Medicare "advantage" plans have formulary lists of lower cost approved drugs, and you certainly can contact your plan and ask. With part D when you sign up, there should have been an online search to see if your meds would be covered. I went on traditional Medicare this year and a part D plan. We picked a cheaper one that hardly covers anything because we don't need much for prescriptions as we are fairly healthy so why pay for something we won't really need. That can always be changed at the annual enrollment period. Sometimes doctors can point you to a manufacturer sponsored discount program. There may also be cheaper medication that can be used instead which should be discussed at the next appointment. This sounds out of reach for most patients if they have no coverage from insurance.

I see my cardiologist every 4 weeks. She is seeing improvement. She prescribed a move to 10 mg camzyos as I had more potential for improvement. Just started that so we will see. So grateful for the improvements.

I pay nothing. I have Medicare. No one can afford that price. My doctor's office had quite a bit of paperwork to do and in the end I was informed that the drug would be over $7000 for the first month and under $10000 for the year. I then was given a $10000 pharmacy prepaid card which was sent by the pharmaceutical company to my assigned specialty pharmacy (Optum) to cover my first year expenses. The pharmacy used has to have a REMs specialty pharmacy section. Please don't worry about the cost. The cost will be covered if you cardiologist knows how to apply for this drug properly. That's an abbreviated explanation.

Thanks for the info. Once I see the new cardiologist I hope to have more info. The price I saw scared me, and I wondered what I would do if the price was prohibitive. Thanks for giving me a little peace of mind.

Even if they qualify you for Camzyos, your Medicare Part D insurance co-payment can be high, particularly if you are in the Donut Hole of Part D. Even in phase 3 of Part D, I was still looking at about $438/month. Bristol Myers Squibb has a Patient Assistance Foundation. https://www.bmspaf.org/ The BMSPF household income limitation for Camzyos is $150,000. But, even if you exceed the income limitation you can appeal and write a hardship letter to explain your circumstances. If you get approved the medication is free!!! That is the route I took.

Nbs is right! Don’t be afraid of the cost. Where there is a will there is a way. Your Dr, and BMS will all work with you. I found they went above and beyond to get me the medication.

Short answer to Costs:
Just gone into my second year on Camzyos. You will need to access an experienced HCM cardiologist and SPECIALTY pharmacy (usually by phone or on line). Your cardiology office or staff worker they may use should help set up with the medical background info required. This is all about getting registered in the REMS program for this new drug. Hopefully you have some form of supplemental pharmacy insurance also (in addition to medicare).
The manufacturer (BMS), your supplemental ins., Medicare, and specialty Rx will work out the end cost to you. This happens behind the scenes and is somewhat a mystery ???
CVS Specialty Pharmacy is my dispensary by overnight delivery and has been very good to work with. You will talk with your selected pharmacy every month so they can check on you before sending your next 30 capsules.
NOW here is the main thing if you are on medicare ..... contact Healthwell Foundation (Google them and call). You probably will be elegable for a $10k per year grant to cover Rx deductables and copays. You do not not have to be poor .... the personal income limit is somewhat over $150,000 per year. Go to their web site and then give them a call.
Relax, be diligent, positive, and be hopeful during the process. Camzyos is worth it if it works for you!

Thanks for your info. I am waiting to hear from the new cardiologists office for my appointment. This will give me some good background so I can ask the right questions.

@marilynsaint, this is why Mayo Connect is so special. These folks just gave you the best information possible, something that not many, including myself, knows. I hope you take good notes with you to your appointment and that your new cardiologist is specialized in HOCM and Camzyos. Sounds like from what @nbs, @jaymaysea and @captainterry have stated, you need to not only learn as much as you can to help yourself, but that you will also need to have your doctor working with you just as much. I hope you come back and let the group know how things turn out. Were you surprised when you were diagnosed with HOCM? Were you having symptoms that were bothersome?

Yes, thanks for that explanation. I like my cardiologist very much but he is not a big on details. (Not that I would necessarily understand them!)
I will like to hear that you are able to stay on Camzyos. It has certainly been a "rescue" for me. I am very appreciative of this forum and all of the helpful (and educated) support it provides.
I am not checking in to this forum as frequently as I should to read helpful updates. That is testament to how well I am feeling!