1. < Hypertrophic Cardiomyopathy (HCM)

Cost of Camzyos on Medicare Drug Plan

Posted by otterbesewing @otterbesewing, Oct 19 6:29pm

Camzyos and Medicare. What am I missing? This is my understanding: Camzyos is NOT on the Medicare Formulary List. Therefore, my part D drug plan considers Camzyos a “non-covered” drug with a retail pharmacy cost of $8636 per month. My doctor filed a “Coverage Determination Request” which came back approved at a cost of $3851.77 for month one, then at a 50% Tier 4 drug for a monthly cost of $1925. All these costs are for 2024. For the calendar year 2025 it is still on the non-covered list with a retail cost of $9421 according to the representative at the Drug Plan and I was told that the doctor needs to file a “coverage determination” letter again for the calendar year 2025 to get updated quotes with the drug plan. Now my questions? For those of you on Medicare, WHAT drug plan do you have that gets the cost to a reasonable amount. Since it is open enrollment, I am willing to change. Also, I am getting conflicting information about the 2025 change that caps yearly out-of-pocket drug costs at $2000. My research online indicated that this is only accumulated for drugs on the Medicare Formulary, (camzyos is not) but the representative for my drug plan said that Camzyos would qualify for this limit. Any information or correction of my understanding is appreciated.

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joycehocm | @joycehocm | Nov 27 10:10am
In reply to @nbs "My traditional Part D Medicare Rx covered 100% of my camzyos for 2024. My Part D..." + (show)
@nbs

My traditional Part D Medicare Rx covered 100% of my camzyos for 2024. My Part D is through UHC and I had to change pharmacies to Walgreens. On the back of my EOB summary highlighted under the Drug Payment stages states I am in the "Catastrophic Coverage : In this stage, the plan pays all the cost for your covered Part D drugs."

When I first started on Camzyos (1.5 years ago), My doctors office had to fill out a form to Medicare stating that there was no other drug available for my condition. Fortunately my cardiologist and the cardiology department is experienced with the Camzyos patient and the craziness we have to go through to get covered.

Hopkins should be experienced with this process at this point. I found this for you - it is the form Hopkins has for applying for Camzyos
https://www.hopkinsmedicine.org/-/media/johns-hopkins-health-plans/documents/usfhp/usfhp_camzyos_pa_form.pdf

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Thank you! Very helplful.

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nbs | @nbs | Nov 27 11:16am

I just got off the phone with UHC (plan D) to see if there were any changes for 2025 as I have paid nothing for Camzyos for all of 2024. The first two people I spoke to said that Camzyos is "out of formula" and when pressed said I can change my plan to see if it was covered. I asked to speak to someone with more knowledge and was sent to the Service Department. After asking the employee what has to be done to get Camzyos covered for 2025 she said that my doctor's office has to fill out the prior authorization form and that I needed to send that form to him. I had her email the form to me and I emailed it to my doctor's office. We had to do this a year and half ago when I started on Camzyos. She then said it would be covered.

My best advice is to keep speaking to people (move up the chain) until you get a complete explanation as to why they aren't covering Camzyos, what needs to be done to get it covered, if they won't cover it who does, etc.
My conversation changed direction when I told the service dept. employee that there was no other drug on the market similar to Camzyos so who else can I speak to get this coverage that I have had for 1.5 years.

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otterbesewing | @otterbesewing | Nov 27 7:14pm
In reply to @losgatos "I too am in a panic having having gotten nowhere trying to figure out how to..." + (show)
@losgatos

I too am in a panic having having gotten nowhere trying to figure out how to reduce the cost of Camzyos on my own. I'm now working with a broker, but there are still hurdles.
1) otterbesewing @otterbesewing : I’m working with an insurance broker and he said NONE of the insurers in my area (Northern CA) include Camzyos on their formulary. Would you please let people know what health plan you’re on? Knowing a health plan that is willing to include it in their formulary would shorten dramatically the process of asking all insurers in my area if they would add it. Thank you!
2) @andrewbradlyn : None of the medicare supplement plans offered in my area will cover Camzyos (without perhaps a doctor's request). From what I gather, it's the same for all the people above, except for otterbesewing who was able to have Camzyos added to his/her insurer's formulary.

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Sorry if my post is misleading. My insurance plan does NOT include Camzyos, but I am willing to pay the $2000 out of pocket for the calendar year 2025 with the NEW 2025 maximum cap limit on drugs with a Medicare Drug plan.

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losgatos | @losgatos | Nov 27 8:19pm

otterbesewing | @otterbesewing : I greatly appreciated the information. I was flailing around and, with your information, I've more progress in the past two days than the previous weeks during my lunch hour. Thank you!

nbs | @nbs : Thank you so much for your two posts. For others who are in my boat, this is what I learned today: I was happy to read the United Healthcare Service Dept. was hepful to nbs, but it is not always helpful. I was on the phone for 2-1/4 hours, talked to 11 different people and then was told to call back on Friday to speak to a manager; the managers were all tied up today. I have a Part G with United, but I don't have Part D coverage yet; this may have been the problem. From a pharmacist I know, I learned that you can find (in theory, I haven't tried it; I think it's on the first screen under something like see plans/drug coverage) the cost of Camzyos under different insurers on Medicare.gov; that you have to be enrolled in Medicare Part D before any insurance company will tell you if they'll add Camzyos to their formulary and they'll cover it (I find this scandalous; It's like buying the promise of something only for that promise to be potentially be denied); once I have Part D coverage, I was told by my health care provider (UCSF) to call their specialty pharmacy on January 2 to provide my BIN/PCN (I believe); they'll send a prior authorization form to my cardiologist and they'll send the completed form to the insurance company. In addition, I just recently started on Camzyos and my prescription is being provided by Bristol Meyers until the end of the year; the person I spoke to at the UCSF specialty pharmacy said the drug company will provide the drug for the first month or two of 2025 until my plan kicks in. More than one person I spoke to today said Camzyos will fall under the $2000 max out of pocket ceiling for Medicare drug coverage; I hope they are informed. Finally, an insurance broker said that given that United covers Camzyos for someone on this forum, its likely/possible they'll cover it for others.

Again, thank you all for the information you've shared. It's helped me immensely.

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1 reply
losgatos | @losgatos | Dec 3 7:26pm
In reply to @losgatos "otterbesewing | @otterbesewing : I greatly appreciated the information. I was flailing around and, with your..." + (show)
@losgatos

otterbesewing | @otterbesewing : I greatly appreciated the information. I was flailing around and, with your information, I've more progress in the past two days than the previous weeks during my lunch hour. Thank you!

nbs | @nbs : Thank you so much for your two posts. For others who are in my boat, this is what I learned today: I was happy to read the United Healthcare Service Dept. was hepful to nbs, but it is not always helpful. I was on the phone for 2-1/4 hours, talked to 11 different people and then was told to call back on Friday to speak to a manager; the managers were all tied up today. I have a Part G with United, but I don't have Part D coverage yet; this may have been the problem. From a pharmacist I know, I learned that you can find (in theory, I haven't tried it; I think it's on the first screen under something like see plans/drug coverage) the cost of Camzyos under different insurers on Medicare.gov; that you have to be enrolled in Medicare Part D before any insurance company will tell you if they'll add Camzyos to their formulary and they'll cover it (I find this scandalous; It's like buying the promise of something only for that promise to be potentially be denied); once I have Part D coverage, I was told by my health care provider (UCSF) to call their specialty pharmacy on January 2 to provide my BIN/PCN (I believe); they'll send a prior authorization form to my cardiologist and they'll send the completed form to the insurance company. In addition, I just recently started on Camzyos and my prescription is being provided by Bristol Meyers until the end of the year; the person I spoke to at the UCSF specialty pharmacy said the drug company will provide the drug for the first month or two of 2025 until my plan kicks in. More than one person I spoke to today said Camzyos will fall under the $2000 max out of pocket ceiling for Medicare drug coverage; I hope they are informed. Finally, an insurance broker said that given that United covers Camzyos for someone on this forum, its likely/possible they'll cover it for others.

Again, thank you all for the information you've shared. It's helped me immensely.

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nbs | @nbs :
AARP has two Medicare Rx plans with United Healthcare. Since I have a Medigap plan through AARP and you received full coverage for the drug, I thought I'd buy my Part D plan from them as well. The two plans are:
1) AARP Medicare Rx Preferred from UCH (PDP); Part D; Plan ID:
S5921-413-0
2) AARP Medicare Rx Saver from UCH (PDP); Part D Plan ID: S5921-376-0
The premium for the Saver is about $9 more/month than the Preferred and the drug cost is about the same $118,028.84 vs. $118,078.04 (mail order pharmacy).
May I ask which plan you have? I'd like to do what I can to make sure the drug is covered.
Thank you!

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