Is Camzyos effective long term?

Posted by par4rosy @par4rosy, Mar 9 8:45am

I was diagnosed with HCM a year ago by My cardiologist and got on
Camzyos 5mg in early December 2023.
Within a week I felt so much better; was walking faster, was much less tired, chest didn’t feel constricted and wasn’t breathless. I felt excellent.
But a few days ago all the old symptoms started to come back. So disappointing.
Wondering what my next steps should be?

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

@daffodilly

I am new here. I am surprised no one has discussed the cost of camzayos. Medicare out of pocket max for one year is $8,000. My dr has recommended it, but cost is prohibitive. Are people opting for this because beta blockers are not working?

Jump to this post

I was looking for a discussion on the cost also. On my current Medicare drug plan, the cost is $4137.81 per month. When I asked the cardiologist office WHAT drug plan covers the cost, I never received an answer. Maybe folks on this site can tell me WHAT Medicare Drug plan covers more of the cost.

REPLY

Have you contacted the Bristol Myers Squibb Foundation? They have a patient assistance programs that may help with cost. https://www.bmspaf.org/

I have Wellcare. They gave authorization for use and my recollection was it was about a third of the monthly cost you mentioned. But, I never had to use it because I get the drug through BMSPAF.

REPLY
@otterbesewing

I was looking for a discussion on the cost also. On my current Medicare drug plan, the cost is $4137.81 per month. When I asked the cardiologist office WHAT drug plan covers the cost, I never received an answer. Maybe folks on this site can tell me WHAT Medicare Drug plan covers more of the cost.

Jump to this post

Hello @otterbesewing, and welcome to Mayo Connect. I'm glad you found this online support group. @jaymaysea has given you some good information. There are many discussions on in the Camzyos group about this topic, have you had a chance to read some of them?
Here is a link to the Camzyos group. They are an amazing group of folks who are willing to share their stories on this relatively new drug.
https://connect.mayoclinic.org/discussion/camzyos-mavacamten-prescription/
As far as Medicare drug plans, that's a great question, and it is open enrollment season now. Do you have a Medicare advisor such as HICAP? This is from their website:
"HICAP (Health Insurance Counseling & Advocacy Program) offers free, one-on-one Medicare counseling and legal help to California residents. Find out how to contact your local HICAP office, schedule an appointment, or attend an educational presentation on Medicare topics."
HICAP is California, but other states off similar services.
I would definitely follow @jaymaysea's advice and use the handy link provided and contact Bristol Meyers, as they will be the most informed about the drug program and whether or not Medicare drug plans even come into play.
Are you on Camzyos or in the first stages of planning to go on it?

REPLY
@karukgirl

Hello @otterbesewing, and welcome to Mayo Connect. I'm glad you found this online support group. @jaymaysea has given you some good information. There are many discussions on in the Camzyos group about this topic, have you had a chance to read some of them?
Here is a link to the Camzyos group. They are an amazing group of folks who are willing to share their stories on this relatively new drug.
https://connect.mayoclinic.org/discussion/camzyos-mavacamten-prescription/
As far as Medicare drug plans, that's a great question, and it is open enrollment season now. Do you have a Medicare advisor such as HICAP? This is from their website:
"HICAP (Health Insurance Counseling & Advocacy Program) offers free, one-on-one Medicare counseling and legal help to California residents. Find out how to contact your local HICAP office, schedule an appointment, or attend an educational presentation on Medicare topics."
HICAP is California, but other states off similar services.
I would definitely follow @jaymaysea's advice and use the handy link provided and contact Bristol Meyers, as they will be the most informed about the drug program and whether or not Medicare drug plans even come into play.
Are you on Camzyos or in the first stages of planning to go on it?

Jump to this post

Hi everyone,

I am 64 years old and I live in the State of Colorado. I still do NOT qualify for Medicare till I am going to be 65 years old next year 2025. I purchased this private insurance that covers almost all cost of Camzyos ($8,436 per month covered) the other $200 copay, Bristol Myers Squibb Laboratory covers $190 and my copay is only $10 per month (I had to fill out a form my nurse gave me for that. My nurse that works with my Cardiologist is a certified Camzyos nurse and my Cardiologist is a Certified Camzyos Cardiologist specialized in obstructive HCOM so they know very well all the paperwork to cover my Camzyos). After I filled out that paperwork, my nurse submitted it to Bristol Myers Squibb (BMS) who approved it based on my low income (less than $50k per year for me and my wife, BMS approved it); therefore, I only pay $10 copay per month since the other $190 monthly copay is paid by BMS lab that manufactures Camzyos. Even if your income is too high, you can fill out an appeal form explaining your personal situation of other significant expenses that makes you not to afford to pay Camzyos and you will be surprised that you "may" get help from BMS.

I was too lucky to choose the Health Insurance plan I have since my Insurance broker helped me to find it out (I pay $626 per month for my Health Insurance and the other $625 per month is paid by the State of Colorado (https://connectforhealthco.com/get-started/new-customers/). My insurance is this:

UnitedHealthCare
Colorado Doctors Plan COLORADO OPTION GOLD. Rocky Mountain Health Plans.
Group ID: COONEX.
https://member.uhc.com/ifp/prelogin?deeplink=exchange&locale=en-US (copy and paste this weblink so you can search for their phone number to see what plan covers Camzyos. The one listed here above does cover me with my Camzyos 5 mg)
My deductible is $1,700 individual and $3,000.
After deductible my copay is 30% in network. In Hospital cover Ded + 30%. Doctor visits Primary Care no copay and Urgent Care copay $50.
OUT OF NETWORK THERE IS NO COVERAGE AT ALL NO MATTER WHAT.
For the new enrollment period that is coming those deductibles and prices may have increased.

Since most are having problems with Medicare to cover Camzyos then, I will have to keep my insurance above since the monthly premium I pay is a lot cheaper than the monthly Camzyos cost of $8,636).

Here is the web link for my plan that you can check coverage of Camzyos. Once you copy and paste this link:
https://shop.uhcexchange.com/marketplace/plan/97879CO0420013?_agent_id=uhc&apply_for_subsidy=true&call=1-877-649-9797&cid=public_relations:ifp-acquisition:ce724567&fip_code=08041&state=CO&zip_code=80924&dependents_count=0&household_size=2&is_default_scenario=false&utilization=high&custom_usage%5Busage%5D=custom&custom_usage%5Bdoctor_visits%5D=0&custom_usage%5Ber_visits%5D=0&custom_usage%5Bhospital_visits%5D=0&custom_usage%5Blabs%5D=0&custom_usage%5Bprescriptions%5D=0&custom_usage%5Bspecialist_visits%5D=0&off_ex=false&year=2024&subsidy=461.00&sort=premium_asc&hsa=false&easy_pricing=false&page=1&per_page=10&all_benefits=false&add_attributes=false&shopping_scenario=finding_plan&health_subsidy_used=0&dental_search=false&v2=true&is_hra_flow=false&dental_params%5Bbenefit_maximum%5D=&dental_params%5Bpremium%5D=&dental_params%5Bdeductible%5D=&dental_params%5Bpage%5D=1&dental_params%5Bper_page%5D=10&health_params%5Bissuer_hios_ids%5D%5B%5D=97879&health_params%5Bsort%5D=premium_asc&health_params%5Bbenefit_maximum%5D=&health_params%5Bpremium%5D=&health_params%5Bdeductible%5D=&health_params%5Bhsa%5D=false&health_params%5Beasy_pricing%5D=false&health_params%5Bpage%5D=1&health_params%5Bper_page%5D=10&show_dental=false&applicants%5B%5D%5Bage%5D=64&applicants%5B%5D%5Bage_format%5D=years&applicants%5B%5D%5Brelationship%5D=primary&applicants%5B%5D%5Bgender%5D=male&applicants%5B%5D%5Butilization%5D=medium&household_income=78000&non_applicants_under19=false&fpl_ratio=3.82&prior_year_fpl_ratio=3.96&csr_type=none&issuer_hios_ids%5B%5D=97879&sep_reason=other&benefit_maximum=&premium=&deductible=&backPath=/marketplace/health#
then click on the lower part "Drug Formulary"

which takes you here (where you enter Camzyos on the search by drug name):
https://welcome.optumrx.com/rxexternal/external-prescription-drug-list?type=ClientFormulary&var=GPX524CO&infoid=GPX524CO&page=insert&par=
which will show you coverage 1 pill per day for 30 day supply. Then your doctor can refill sending prescription so you can get it every month.

Notice the weblink above is based on my income that was low last year so your monthly premium depends on your gross taxable income.

I hope this information helps and I wish the best to everyone.
God bless all of you and I hope all of you improve your health.

REPLY
@otterbesewing

I was looking for a discussion on the cost also. On my current Medicare drug plan, the cost is $4137.81 per month. When I asked the cardiologist office WHAT drug plan covers the cost, I never received an answer. Maybe folks on this site can tell me WHAT Medicare Drug plan covers more of the cost.

Jump to this post

A health insurance broker in the area you live may help you with what insurance covers. My answer above on this page shows what my insurance broker helped me in my case in the state of Colorado. I hope this information below helps you. I wish you the best.

REPLY
@manuelpo

Hi everyone,

I am 64 years old and I live in the State of Colorado. I still do NOT qualify for Medicare till I am going to be 65 years old next year 2025. I purchased this private insurance that covers almost all cost of Camzyos ($8,436 per month covered) the other $200 copay, Bristol Myers Squibb Laboratory covers $190 and my copay is only $10 per month (I had to fill out a form my nurse gave me for that. My nurse that works with my Cardiologist is a certified Camzyos nurse and my Cardiologist is a Certified Camzyos Cardiologist specialized in obstructive HCOM so they know very well all the paperwork to cover my Camzyos). After I filled out that paperwork, my nurse submitted it to Bristol Myers Squibb (BMS) who approved it based on my low income (less than $50k per year for me and my wife, BMS approved it); therefore, I only pay $10 copay per month since the other $190 monthly copay is paid by BMS lab that manufactures Camzyos. Even if your income is too high, you can fill out an appeal form explaining your personal situation of other significant expenses that makes you not to afford to pay Camzyos and you will be surprised that you "may" get help from BMS.

I was too lucky to choose the Health Insurance plan I have since my Insurance broker helped me to find it out (I pay $626 per month for my Health Insurance and the other $625 per month is paid by the State of Colorado (https://connectforhealthco.com/get-started/new-customers/). My insurance is this:

UnitedHealthCare
Colorado Doctors Plan COLORADO OPTION GOLD. Rocky Mountain Health Plans.
Group ID: COONEX.
https://member.uhc.com/ifp/prelogin?deeplink=exchange&locale=en-US (copy and paste this weblink so you can search for their phone number to see what plan covers Camzyos. The one listed here above does cover me with my Camzyos 5 mg)
My deductible is $1,700 individual and $3,000.
After deductible my copay is 30% in network. In Hospital cover Ded + 30%. Doctor visits Primary Care no copay and Urgent Care copay $50.
OUT OF NETWORK THERE IS NO COVERAGE AT ALL NO MATTER WHAT.
For the new enrollment period that is coming those deductibles and prices may have increased.

Since most are having problems with Medicare to cover Camzyos then, I will have to keep my insurance above since the monthly premium I pay is a lot cheaper than the monthly Camzyos cost of $8,636).

Here is the web link for my plan that you can check coverage of Camzyos. Once you copy and paste this link:
https://shop.uhcexchange.com/marketplace/plan/97879CO0420013?_agent_id=uhc&apply_for_subsidy=true&call=1-877-649-9797&cid=public_relations:ifp-acquisition:ce724567&fip_code=08041&state=CO&zip_code=80924&dependents_count=0&household_size=2&is_default_scenario=false&utilization=high&custom_usage%5Busage%5D=custom&custom_usage%5Bdoctor_visits%5D=0&custom_usage%5Ber_visits%5D=0&custom_usage%5Bhospital_visits%5D=0&custom_usage%5Blabs%5D=0&custom_usage%5Bprescriptions%5D=0&custom_usage%5Bspecialist_visits%5D=0&off_ex=false&year=2024&subsidy=461.00&sort=premium_asc&hsa=false&easy_pricing=false&page=1&per_page=10&all_benefits=false&add_attributes=false&shopping_scenario=finding_plan&health_subsidy_used=0&dental_search=false&v2=true&is_hra_flow=false&dental_params%5Bbenefit_maximum%5D=&dental_params%5Bpremium%5D=&dental_params%5Bdeductible%5D=&dental_params%5Bpage%5D=1&dental_params%5Bper_page%5D=10&health_params%5Bissuer_hios_ids%5D%5B%5D=97879&health_params%5Bsort%5D=premium_asc&health_params%5Bbenefit_maximum%5D=&health_params%5Bpremium%5D=&health_params%5Bdeductible%5D=&health_params%5Bhsa%5D=false&health_params%5Beasy_pricing%5D=false&health_params%5Bpage%5D=1&health_params%5Bper_page%5D=10&show_dental=false&applicants%5B%5D%5Bage%5D=64&applicants%5B%5D%5Bage_format%5D=years&applicants%5B%5D%5Brelationship%5D=primary&applicants%5B%5D%5Bgender%5D=male&applicants%5B%5D%5Butilization%5D=medium&household_income=78000&non_applicants_under19=false&fpl_ratio=3.82&prior_year_fpl_ratio=3.96&csr_type=none&issuer_hios_ids%5B%5D=97879&sep_reason=other&benefit_maximum=&premium=&deductible=&backPath=/marketplace/health#
then click on the lower part "Drug Formulary"

which takes you here (where you enter Camzyos on the search by drug name):
https://welcome.optumrx.com/rxexternal/external-prescription-drug-list?type=ClientFormulary&var=GPX524CO&infoid=GPX524CO&page=insert&par=
which will show you coverage 1 pill per day for 30 day supply. Then your doctor can refill sending prescription so you can get it every month.

Notice the weblink above is based on my income that was low last year so your monthly premium depends on your gross taxable income.

I hope this information helps and I wish the best to everyone.
God bless all of you and I hope all of you improve your health.

Jump to this post

Thank you for all that information. I will be calling the Bristol Myers Squibb Nurse Navigator tomorrow morning. Hope they will be able to assist me with a drug plan and considerations. What makes it so much more confusing is that the plans vary by location. I am in Indiana. I will also be calling a Medicare advisor. All this is enough to give me more rapid heartbeat, chest pain and shortness of breath!

REPLY

I did not need an insurance broker.
I have government medicare and a supplement. After paying my $240 copay my cost for Camzyos in 2024 is $0. On the back of my pharmacy monthly bill are these words: "Catastrophic Coverage (you are in this stage). In this stage the plan pays all of the cost for your covered Part D drugs."
There is a cap of $2000 out of pocket (which I never had to pay thanks to my insurance).

REPLY
@nbs

I did not need an insurance broker.
I have government medicare and a supplement. After paying my $240 copay my cost for Camzyos in 2024 is $0. On the back of my pharmacy monthly bill are these words: "Catastrophic Coverage (you are in this stage). In this stage the plan pays all of the cost for your covered Part D drugs."
There is a cap of $2000 out of pocket (which I never had to pay thanks to my insurance).

Jump to this post

Thank you so much for your valuable information.
There are many different health plans for medicare part A and supplement part B and they are also different for "each state in the USA". I live in the State of Colorado. You do not have to answer this questions; however, it will be great to know which specific insurance plan for part A and which specific plan for health insurance for supplement part B offers that generous program of $240 copay for Camzyos.
Again thank you so much for the valuable information that does not need an insurance broker.

REPLY

My Medicare supplement is through Anthem. My Medicare RX is AARP through United HealthCare. I live in Missouri.
I started on Camzyos in June, 2023. My first year I had a $10,000 grant given to the pharmacy (Optum) that covered my copay costs. By 2024, once my $240 deductible was made all costs were covered due to the fact Camzyos falls into a catastrophic drug category. Just having an echo covered my copay. (honestly , this whole process has been vague but my doctor's office has taken over all issues regarding payment for Camzyos).

I had one month where my dose changed resulting in a $17,000+ cost where I paid nothing.
One more point, your doctor 's officecalls in the prescription(and/or uses a portal) but the patient (me) has to call every month to have it sent. Only the patient can provide the address as to where Camzyos is to be sent.

It is a learning experience.

REPLY
@nbs

My Medicare supplement is through Anthem. My Medicare RX is AARP through United HealthCare. I live in Missouri.
I started on Camzyos in June, 2023. My first year I had a $10,000 grant given to the pharmacy (Optum) that covered my copay costs. By 2024, once my $240 deductible was made all costs were covered due to the fact Camzyos falls into a catastrophic drug category. Just having an echo covered my copay. (honestly , this whole process has been vague but my doctor's office has taken over all issues regarding payment for Camzyos).

I had one month where my dose changed resulting in a $17,000+ cost where I paid nothing.
One more point, your doctor 's officecalls in the prescription(and/or uses a portal) but the patient (me) has to call every month to have it sent. Only the patient can provide the address as to where Camzyos is to be sent.

It is a learning experience.

Jump to this post

Thank you so much for all the information!

REPLY
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