Are you sure about the cap on your medication?
Believe me, I'm all over the board trying to figure out what to do about my Revlimid, and nobody has told me that there is an upper level cap beyond which Medicare absolutely will not pay.
There's a nasty co-pay issue (especially when you reach the 'donut hole, but anybody taking Revlimid gets in and out of that 'donut hole with the first cycle) until you reach the 'catastrophic coverage' classification, but after that the co pay is better (that is, if you have Part D drug coverage).
As well, Celgene has a pretty darned good program to help you with those copays if you need it. There are other organizations out there, as well, that will help.
I don't quite get what you are talking about, here. According to everything I have read, there's a cap...but not on what they cover; it's on what you have to pay, co-pay wise.
Forums
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: The cost of Revlimid - what do you pay?
Calgene is no longer helping with the cost. This is according to their website, but there are people who still are and Medicare does a lot. Between a private organization and Medicare, my Revlimid, which is just under $10K for 21 pills, is mostly covered.
John you don't say were you are located, by country?
John you don't say were you are located, by country?
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: The cost of Revlimid - what do you pay?
CVS (Specialty) Bills $ 16,105
Ins co pays $12,300
Surveys (monthly) still free...
ungodly prices.
Ins co pays $12,300
Surveys (monthly) still free...
ungodly prices.
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R Neb
Re: The cost of Revlimid - what do you pay?
This might make an interesting poll. Not what you pay for Revlimid, but what the cost is? There seems to be quite a range for a tightly controlled drug.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: The cost of Revlimid - what do you pay?
I"m already used to insane pricing as my wife has a rare for her age case of leukemia which requires life-long TKI chemo treatement (1 pill per day at approx $400 per day) - she must take the oral chemo for life to keep her BCR-ABL: cancer causing chromosome at bay.
The fact that she must take this forever and her condition is not curable (save for a transplant which is very risky and not likely) - the TKI chemo results in very bad side effects on a regular basis which she's been diagnosed / treated for about 1.5 yrs and the thought that she must endure the treatment for life isn't very pleasant (causes fever , nausea, bone pain) and also interferes with her white cell production as well as functioning of platelets (her platelet counts are ok at this time but she bruises like crazy, the ANC drops under 1,000 at times, she keeps obtaining UTI's and other infections - proteus and other items she has never had until now) .
She must take the TKI chemo agent for life - until the cancer cells mutate at which time we pray there is a new option to handle mutations (one product, ponatinib, does handle the most common mutation but it was pulled off the market after several deaths and is now available as a last resort for patients failing other TKI chemo's - it's risky with the many associated blood clots / strokes, but the alternative is the leukemia certainly ...) .
The thought of not only the side effects but also the cost of the med - the co-pay's for her monthly TKI chemo and then how many years before the mutation develops, what is the insurance company only covers a certain older less expensive TKI chemo (which has happened to many folks that she corresponds with online) or if there's ever any sort of cap as I now have smoldering myeloma (definitely not active, but increased from 5% marrow no clonal cells last summer to presently 10% with 91% of plasma cells tested as aberrant, also now Bence Jones Kappa is present for the 1st time ever in my urine and also protein is a little high in urine overall at 162 mg /TV where last summer my urine tested fine, thankfully my M spike blood has not changed much, still only .400 g/dL) .
Her routine PCR labs and occasional BMB's are quite expensive - just as I've seen on this thread each time she visits her oncologist a PCR test is done which is mega expensive but needed - then throw in my PET scan, UPEP, SPEP, MRI, skeletal survey, BMB and flow cyometry / FISH - together in the past month we've had easily over $100k in claims.
My wife cannot work any longer due to her leukemia and now we are both on my insurance - if anything were to ever happen to me - I couldn't work and lose our insurance, I couldn't imagine just our current medical items being taken care of including her $10k or so TKI chemo for life and all leukemia related care - just a little depressing knowing she has to deal with it for life then throw in my situation which can't progress again so I can support both of us.
Kinda crazy to be in our early 40's and both have such rare conditions for our age nearly at the same time and so thankful i'm only smoldering myeloma and my plasma cell growth rates better slow down as the increase from last year to present in under 10 months has me a little on edge but only as I know I must be there for my wife - so hopefully things calm down for me and somehow her oral chemo can get her near a molecular response (the goal is to get her cancer cell in blood rate to a level that cannot be detected via PCR and remain as such for as long as possible).
Anyway - seeing this thread and everyone, some shocked at the costs of care made me post - I guess because it reminded me of her care for leukemia and now knowing I'm slipping into smoldering myeloma and still in shock that I'm too having bone marrow biopsies and "dual hematology" appointments - it's just a little shocking too on the costs (my share of my myeloma workup arrived, billing and it's up there though nowhere near the $30k or more total but still up there especially to add on top of similar costs for my wife) - the insurance companies must really not like us, ha.
So strange to have all of this to worry with for both of, especially her situation with an active leukemia at just barely into our 40's, what a shock to be thrown into all of this at once, both of us. Of course she doesn't know I hope at least how concerned I am at the costs and just "everything" as we need her to do as well as possible in her treatment.
Good luck everyone in keeping everything covered and doing well.
The fact that she must take this forever and her condition is not curable (save for a transplant which is very risky and not likely) - the TKI chemo results in very bad side effects on a regular basis which she's been diagnosed / treated for about 1.5 yrs and the thought that she must endure the treatment for life isn't very pleasant (causes fever , nausea, bone pain) and also interferes with her white cell production as well as functioning of platelets (her platelet counts are ok at this time but she bruises like crazy, the ANC drops under 1,000 at times, she keeps obtaining UTI's and other infections - proteus and other items she has never had until now) .
She must take the TKI chemo agent for life - until the cancer cells mutate at which time we pray there is a new option to handle mutations (one product, ponatinib, does handle the most common mutation but it was pulled off the market after several deaths and is now available as a last resort for patients failing other TKI chemo's - it's risky with the many associated blood clots / strokes, but the alternative is the leukemia certainly ...) .
The thought of not only the side effects but also the cost of the med - the co-pay's for her monthly TKI chemo and then how many years before the mutation develops, what is the insurance company only covers a certain older less expensive TKI chemo (which has happened to many folks that she corresponds with online) or if there's ever any sort of cap as I now have smoldering myeloma (definitely not active, but increased from 5% marrow no clonal cells last summer to presently 10% with 91% of plasma cells tested as aberrant, also now Bence Jones Kappa is present for the 1st time ever in my urine and also protein is a little high in urine overall at 162 mg /TV where last summer my urine tested fine, thankfully my M spike blood has not changed much, still only .400 g/dL) .
Her routine PCR labs and occasional BMB's are quite expensive - just as I've seen on this thread each time she visits her oncologist a PCR test is done which is mega expensive but needed - then throw in my PET scan, UPEP, SPEP, MRI, skeletal survey, BMB and flow cyometry / FISH - together in the past month we've had easily over $100k in claims.
My wife cannot work any longer due to her leukemia and now we are both on my insurance - if anything were to ever happen to me - I couldn't work and lose our insurance, I couldn't imagine just our current medical items being taken care of including her $10k or so TKI chemo for life and all leukemia related care - just a little depressing knowing she has to deal with it for life then throw in my situation which can't progress again so I can support both of us.
Kinda crazy to be in our early 40's and both have such rare conditions for our age nearly at the same time and so thankful i'm only smoldering myeloma and my plasma cell growth rates better slow down as the increase from last year to present in under 10 months has me a little on edge but only as I know I must be there for my wife - so hopefully things calm down for me and somehow her oral chemo can get her near a molecular response (the goal is to get her cancer cell in blood rate to a level that cannot be detected via PCR and remain as such for as long as possible).
Anyway - seeing this thread and everyone, some shocked at the costs of care made me post - I guess because it reminded me of her care for leukemia and now knowing I'm slipping into smoldering myeloma and still in shock that I'm too having bone marrow biopsies and "dual hematology" appointments - it's just a little shocking too on the costs (my share of my myeloma workup arrived, billing and it's up there though nowhere near the $30k or more total but still up there especially to add on top of similar costs for my wife) - the insurance companies must really not like us, ha.
So strange to have all of this to worry with for both of, especially her situation with an active leukemia at just barely into our 40's, what a shock to be thrown into all of this at once, both of us. Of course she doesn't know I hope at least how concerned I am at the costs and just "everything" as we need her to do as well as possible in her treatment.
Good luck everyone in keeping everything covered and doing well.
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pinball - Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2010 MGUS, 2014 Smoldering
- Age at diagnosis: 39
Re: The cost of Revlimid - what do you pay?
I was diagnosed with multiple myeloma in March 2012. I had a stem cell transplant [SCT] in June 2013 and just celebrated one year cancer free. Yes, I said cancer FREE!
My M protein level dropped to 0 by October after the stem cell transplant and has remained there. I was on Revlimid for six month before SCT and have been on it since then. Just saw my oncologist Tuesday and he said I will stay on it at least another year. My GP has told me to NEVER let them stop the Revlimid.
As for cost, I guess I am super fortunate as my cost has been ZERO ... no co-pay or anything. I am 58 and have private health insurance through a major provider. I have to suspect that, just as with hospital and doctor bills, the big insurance companies make deals with the drug companies. I really doubt if my insurance company is paying $100,000 a year for me to take this med without ever questioning if I need to continue. They also made a deal with the hospital when I had the SCT. It did not cost me one penny. The hospital agreed to accept what my insurance company paid in one lump sum.
I wish I could tell everyone how to do this, but I did not do anything special. It just all worked this way for me. One thing I can tell you is I never worried about any of it but rather I gave it all to God and by Faith I knew He would take care of things for me.
Also, after the SCT in June 2013 my M protein level was still showing about level 1 and stayed that way for several months. My oncologist said that was good and would be the best it would get. One day, while riding my motorcycle, I ran up on a group of other riders. Somehow we got on the subject and I told them my whole story including that I would be going back in a few days for a checkup. They all laid hands on me and prayed. Specifically one guy prayed that when I went for my check up the doctor would say that 'it was gone ... like it was never there'.
Four days later I heard THOSE EXACT WORDS come from my oncologist mouth and I have been at ZERO ever since.
Random? I think not.
Get the SCT early, get on and stay on Revlimid, and pray and have faith that God will take care of you in all ways.
One other thing ... I took and still take a supplement that has the juice from the mangosteen fruit and is touted to help all kinds of cancer. I will not say it has helped or not, but it sure has not hurt. Google mangosteen.
My M protein level dropped to 0 by October after the stem cell transplant and has remained there. I was on Revlimid for six month before SCT and have been on it since then. Just saw my oncologist Tuesday and he said I will stay on it at least another year. My GP has told me to NEVER let them stop the Revlimid.
As for cost, I guess I am super fortunate as my cost has been ZERO ... no co-pay or anything. I am 58 and have private health insurance through a major provider. I have to suspect that, just as with hospital and doctor bills, the big insurance companies make deals with the drug companies. I really doubt if my insurance company is paying $100,000 a year for me to take this med without ever questioning if I need to continue. They also made a deal with the hospital when I had the SCT. It did not cost me one penny. The hospital agreed to accept what my insurance company paid in one lump sum.
I wish I could tell everyone how to do this, but I did not do anything special. It just all worked this way for me. One thing I can tell you is I never worried about any of it but rather I gave it all to God and by Faith I knew He would take care of things for me.
Also, after the SCT in June 2013 my M protein level was still showing about level 1 and stayed that way for several months. My oncologist said that was good and would be the best it would get. One day, while riding my motorcycle, I ran up on a group of other riders. Somehow we got on the subject and I told them my whole story including that I would be going back in a few days for a checkup. They all laid hands on me and prayed. Specifically one guy prayed that when I went for my check up the doctor would say that 'it was gone ... like it was never there'.
Four days later I heard THOSE EXACT WORDS come from my oncologist mouth and I have been at ZERO ever since.
Random? I think not.
Get the SCT early, get on and stay on Revlimid, and pray and have faith that God will take care of you in all ways.
One other thing ... I took and still take a supplement that has the juice from the mangosteen fruit and is touted to help all kinds of cancer. I will not say it has helped or not, but it sure has not hurt. Google mangosteen.
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RobertCagle
Re: The cost of Revlimid - what do you pay?
No out of pocket expenses for Revlimid. Blue Cross Blue Shield.
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tropicdiver - Name: Bob Phillips
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: The cost of Revlimid - what do you pay?
We also have Blue Cross Blue Shield, but I know employers can structure medical and pharmacy benefits to meet their company's budget. My husband's Revlimid he received this week from Biologic: $11,038 was billed, BCBS paid $9,248 and we paid $80 copay.
Chris M.
Chris M.
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Chris M.
Re: The cost of Revlimid - what do you pay?
I have a 50 dollar copay on my Revlimid. Blue Cross Blue Shield of Arkansas is my insurance.
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gmarv - Name: marvin
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: aug.2012
- Age at diagnosis: 57
Re: The cost of Revlimid - what do you pay?
I'm curious how Celgene prices Revlimid. I don't expect any good answers to this. Luckily, my insurance pays the full cost of it for me. And it IS a life extender. But I was looking at how much is billed to my insurance company for a 28 day supply of 10 mg Revlimid pills.
Here are the amounts billed to and paid by my insurance company for the last four 28 day prescriptions.
1) Jun 12, 2014 - $12,444
2) Jul 11, 2014 - $12,203
3) Aug 12, 2014 - $12,978
4) Sep 08, 2014 - $13,554
Why does the price of this drug vary so much from month to month? From just 4 months ago to my most recent prescription, the price has gone up almost 9% in just 4 months.
I know this is a cash cow for Celgene, and I assume they will try to get whatever they can for it. But wouldn't you think that the price would be fairly stable from month to month, assuming that more patients start using it each month and their revenue keeps increasing just based on that assumption? I wonder when insurance companies are going to balk at paying such high prices.
Here are the amounts billed to and paid by my insurance company for the last four 28 day prescriptions.
1) Jun 12, 2014 - $12,444
2) Jul 11, 2014 - $12,203
3) Aug 12, 2014 - $12,978
4) Sep 08, 2014 - $13,554
Why does the price of this drug vary so much from month to month? From just 4 months ago to my most recent prescription, the price has gone up almost 9% in just 4 months.
I know this is a cash cow for Celgene, and I assume they will try to get whatever they can for it. But wouldn't you think that the price would be fairly stable from month to month, assuming that more patients start using it each month and their revenue keeps increasing just based on that assumption? I wonder when insurance companies are going to balk at paying such high prices.
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DallasGG - Name: Kent
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 6/20/2013
- Age at diagnosis: 56