I just got my second prescription of Revlimid. Like most others, I was astounded at the cost. I have Medicare part D coverage but the co-pay alone is still staggering. Figuring 20 mg pills a month comes to a 5% co-pay of nearly $500.00 and that is after going through the "donut hole" which would cost me another 2 grand.
Fortunately, the pharmacy got me a grant from Patient Access Network Foundation and I have ZERO co-pay. At least, until the grant expires or runs out of funds. Not everyone will qualify for this help, but, it is worth looking into. I think the guidelines require that you have insurance coverage and that your income is less than 500% of poverty level. They can give you the exact details. It is well worth checking out.
Now, I am waiting to see what Medicare is going to do about the 3 thousand dollar belly sticks I get each week. I go to Siteman Cancer Center at Barnes Hospital in St Louis. The larger treatment centers have people who can help you out with these plans if you qualify. Something you may not get if you are stuck with a "podunk" hospital. The people at Barnes tell me I will probably get help from my specialty pharmacy if needed for the treatments I get there.
Thank God for these organizations. The ultra poor seem to get taken care of and the very wealthy have the $$$ but many of us just live a comfortable life and are doing fine and playing by the rules and then suddenly, we could be facing financial ruin in a short time.
It is a little early for me to develop a firm attitude, but my inclination is to accept any charitable help I can get and continue to enjoy what is left of my life the best I can. When I am gone, perhaps I can leave something for those who helped me and they can pass it on to others in a similar situation.
Charlie (grouchy German)
Forums
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Grizlump - Name: Charlie
- Who do you know with myeloma?: me
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 67
Re: The cost of Revlimid - what do you pay?
Chris,
Just wanted to add what my costs were on Revlimid. Yes, the amount for this drug is huge. I am on my wife's insurance, and it's one of the lower plans available that she got at open enrollment.
I thought that they might not pay towards the Revlimid at all. Surprisingly, my out-of-pocket was only 20 dollars, the amount shown on the invoice was $9,455.03.
Here's something that surprised me. The first order came from a pharmacy here in California and was cheaper ($9,255.03). For some reason, the insurance changed the pharmacy to one back east and it's $200 more. Maybe there are some kickback from pharmacy to insurance companies at year end, who knows.
I was having a very good response from the Revlimid and dexamethasone combo until my last treatment, when I had an extremely bad rash and swelling.
My local oncologist and future transplant doctor said to stop the Revlimid and go to Velcade subcutaneous (subq) injections. I had my first one yesterday. No big deal but, as with anything new for treatment, I am watching for any side effects.
Revlimid was good for me because I had pills to take and didn't have to go anywhere for treatments and it was working very well. It only made me a little sleepy, so I took it at night.
I could do self injections with Velcade, but my Aflac cancer policy pays me to have it done at my oncologist's office.
Castaway
Just wanted to add what my costs were on Revlimid. Yes, the amount for this drug is huge. I am on my wife's insurance, and it's one of the lower plans available that she got at open enrollment.
I thought that they might not pay towards the Revlimid at all. Surprisingly, my out-of-pocket was only 20 dollars, the amount shown on the invoice was $9,455.03.
Here's something that surprised me. The first order came from a pharmacy here in California and was cheaper ($9,255.03). For some reason, the insurance changed the pharmacy to one back east and it's $200 more. Maybe there are some kickback from pharmacy to insurance companies at year end, who knows.
I was having a very good response from the Revlimid and dexamethasone combo until my last treatment, when I had an extremely bad rash and swelling.
My local oncologist and future transplant doctor said to stop the Revlimid and go to Velcade subcutaneous (subq) injections. I had my first one yesterday. No big deal but, as with anything new for treatment, I am watching for any side effects.
Revlimid was good for me because I had pills to take and didn't have to go anywhere for treatments and it was working very well. It only made me a little sleepy, so I took it at night.
I could do self injections with Velcade, but my Aflac cancer policy pays me to have it done at my oncologist's office.
Castaway
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Castaway - Name: George
- Who do you know with myeloma?: just myself
- When were you/they diagnosed?: 1/24/14
- Age at diagnosis: 62
Re: The cost of Revlimid - what do you pay?
Just a Scandinavian perspective,
In this region, special medication is supplied by public hospitals. This also goes for all myeloma medicine and the supporting medicine helping against side effects. It is free of charge, and the first time I see the prices is here.
The same goes for tests, transplants etc.etc.
Medicine on prescription by your GG, dentist etc. is only partially free. Each new year, approximately the first DKR 900 (equivalent to about $150) is paid by the patient. Then the subsidies increase and from DKR 3000 per year (about $500) you will only pay 15%. Those paying higher amounts get 100% subsidies, but you can still see the price on the bill from the pharmacy.
Children under 18 and chronically ill and people on social security pay less and get 60% already on the first DKR 900.
But as a multiple myeloma or other serious illness patient money doesn't get mentioned at all.
There may be dark sides to any system, in our case it is the tax every citizen has to pay, so I admit that free is probably an exaggeration. But there is no paperwork or applications connected to getting sick. If you need treatment and it is regarded safe and available, you get it.
Just wanted to give this input.
In this region, special medication is supplied by public hospitals. This also goes for all myeloma medicine and the supporting medicine helping against side effects. It is free of charge, and the first time I see the prices is here.
The same goes for tests, transplants etc.etc.
Medicine on prescription by your GG, dentist etc. is only partially free. Each new year, approximately the first DKR 900 (equivalent to about $150) is paid by the patient. Then the subsidies increase and from DKR 3000 per year (about $500) you will only pay 15%. Those paying higher amounts get 100% subsidies, but you can still see the price on the bill from the pharmacy.
Children under 18 and chronically ill and people on social security pay less and get 60% already on the first DKR 900.
But as a multiple myeloma or other serious illness patient money doesn't get mentioned at all.
There may be dark sides to any system, in our case it is the tax every citizen has to pay, so I admit that free is probably an exaggeration. But there is no paperwork or applications connected to getting sick. If you need treatment and it is regarded safe and available, you get it.
Just wanted to give this input.
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Lev - Name: Lev
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 57
Re: The cost of Revlimid - what do you pay?
You are correct ... nothing is free, and those nations with the healthcare you describe pay a huge tax.
However, from what I can tell, that's not that big a problem; I can't see where the tax is all that much bigger (if anywhere near as big) as the premiums we pay in the USA.
The PROBLEM lies in the size of the system. Something that works in Sweden or Denmark or other, smaller (in size and population) is going to run into massive administrative problems in larger nations, and we in the USA are seeing that now.
I have noticed that the larger the nation, the more problems the system runs into, and the less personal the service. How could it not be?
Still, we need to do something.
As for me, I had really good insurance that enabled me to get my Revlimid for a $20 copay. Then I had to go on Medicare (I chose a Kaiser 'Senior Advantage' plan that includes Part D benefits) that made getting my first cycle on the new insurance problematic. I was in and out of the 'donut hole' with the first prescription, with a co-pay of nearly #4 grand. I am fortunate, however, in having a grant from the Chronic Disease Foundation, which handled that copay for me. Now that i'm in 'catastrophic coverage,' my co-pay is $11.50.
Whew.
Everything ELSE is costing weirdly, but at least the Revlimid is handled. Until January.
However, from what I can tell, that's not that big a problem; I can't see where the tax is all that much bigger (if anywhere near as big) as the premiums we pay in the USA.
The PROBLEM lies in the size of the system. Something that works in Sweden or Denmark or other, smaller (in size and population) is going to run into massive administrative problems in larger nations, and we in the USA are seeing that now.
I have noticed that the larger the nation, the more problems the system runs into, and the less personal the service. How could it not be?
Still, we need to do something.
As for me, I had really good insurance that enabled me to get my Revlimid for a $20 copay. Then I had to go on Medicare (I chose a Kaiser 'Senior Advantage' plan that includes Part D benefits) that made getting my first cycle on the new insurance problematic. I was in and out of the 'donut hole' with the first prescription, with a co-pay of nearly #4 grand. I am fortunate, however, in having a grant from the Chronic Disease Foundation, which handled that copay for me. Now that i'm in 'catastrophic coverage,' my co-pay is $11.50.
Whew.
Everything ELSE is costing weirdly, but at least the Revlimid is handled. Until January.
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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?
I'm surprised no one sees an inconsistency with what's happening here.
If I were a small hardware store selling plywood sheets and a hurricane was coming I would be prohibited from profiteering during the crisis. If it were not for government intervention, I COULD charge $500 per sheet for the plywood until the hurricane struck or my supply ran out. But (thank goodness) the government says I can't do that. It would be unfair to those in need of my plywood.
Yet at the same time, we have a large drug company who is apparently the only manufacturer of this drug (Revlimid) and they charge whatever the market will bear ($10,000, $12,000 or >$14,000/month) for a NEEDED drug - (needed in terms that I'd prefer to live - much like the plywood is "needed" to protect the homeowner's life and property). And no one seems to see that parallel.
And the problem really is that for those who are on Medicare, it's the government that's footing the majority of the bill for this drug. And let's face it, this is NOT a newly discovered/developed formula - I remember thalidomide as an OTC offered in Europe in 1957. So, the reformulation is probably not a major undertaking. The charges appear to be based on "what will the market bear" for this drug.
And, so far, no one with the power seems willing to take them to task. The irony is that the manufacturer is also the major funding source of grants to pay for the drug for many of us.. And we live in fear that if we complain too much or too loudly about the hand that feeds us (via grants) our grants may be cut off.
So no only does the manufacturer get to report a nice tidy profit (thank you insurance companies and Medicare), but then on the other side of the books, they get to report the charitable contribution for funding the grants!
Is this a great country or what? Provided you're a large drug manufacturer providing a life saving drug to a captured population and not a poor store owner charged with profiteering during a weather crisis.
If I were a small hardware store selling plywood sheets and a hurricane was coming I would be prohibited from profiteering during the crisis. If it were not for government intervention, I COULD charge $500 per sheet for the plywood until the hurricane struck or my supply ran out. But (thank goodness) the government says I can't do that. It would be unfair to those in need of my plywood.
Yet at the same time, we have a large drug company who is apparently the only manufacturer of this drug (Revlimid) and they charge whatever the market will bear ($10,000, $12,000 or >$14,000/month) for a NEEDED drug - (needed in terms that I'd prefer to live - much like the plywood is "needed" to protect the homeowner's life and property). And no one seems to see that parallel.
And the problem really is that for those who are on Medicare, it's the government that's footing the majority of the bill for this drug. And let's face it, this is NOT a newly discovered/developed formula - I remember thalidomide as an OTC offered in Europe in 1957. So, the reformulation is probably not a major undertaking. The charges appear to be based on "what will the market bear" for this drug.
And, so far, no one with the power seems willing to take them to task. The irony is that the manufacturer is also the major funding source of grants to pay for the drug for many of us.. And we live in fear that if we complain too much or too loudly about the hand that feeds us (via grants) our grants may be cut off.
So no only does the manufacturer get to report a nice tidy profit (thank you insurance companies and Medicare), but then on the other side of the books, they get to report the charitable contribution for funding the grants!
Is this a great country or what? Provided you're a large drug manufacturer providing a life saving drug to a captured population and not a poor store owner charged with profiteering during a weather crisis.
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Ron K
Re: The cost of Revlimid - what do you pay?
Hi, I started Revlimid today. Picked it up yesterday with 0 co-pay. That is probably because I have met my out of pocket expenses for the year -- $9,000. I am with Anthem Blue Cross in California.
I am in the process of re-enrolling into a company fund in October to start January 2015. Have been trying to find out what my expenses will be in January, to no avail, so I can choose the correct fund. The fund I am in just might be the correct one, but we signed up to this BEFORE I was diagnosed, so just want to make sure.
Is it CVS Caremark who I should call? I get it shipped to them for collection. I feel like I'm just flying by the seat of my pants as I have a child starting college next year also.
I am in the process of re-enrolling into a company fund in October to start January 2015. Have been trying to find out what my expenses will be in January, to no avail, so I can choose the correct fund. The fund I am in just might be the correct one, but we signed up to this BEFORE I was diagnosed, so just want to make sure.
Is it CVS Caremark who I should call? I get it shipped to them for collection. I feel like I'm just flying by the seat of my pants as I have a child starting college next year also.
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aussiegirl
Re: The cost of Revlimid - what do you pay?
For those interested, here is a link to a 60 Minutes story about drug costs. In the US the cost is typically higher than in the rest of the world.
"Dr. Kantarjian says one thing that has to change is the law that prevents Medicare from negotiating for lower prices.
Dr. Hagop Kantarjian: This is unique to the United States. If you look anywhere in the world, there are negotiations. Either by the government or by different regulatory bodies to regulate the price of the drug. And this is why the prices are 50 percent to 80 percent lower anywhere in the world compared to the United States.
Lesley Stahl: 50 percent to 80 percent?
Dr. Hagop Kantarjian: 50 percent to 80 percent.
Lesley Stahl: The same drug?
Dr. Hagop Kantarjian: Same drug. American patients end up paying two to three times more for the same drug compared to Canadians or Europeans or Australians and others."
http://www.cbsnews.com/news/the-cost-of-cancer-drugs/
"Dr. Kantarjian says one thing that has to change is the law that prevents Medicare from negotiating for lower prices.
Dr. Hagop Kantarjian: This is unique to the United States. If you look anywhere in the world, there are negotiations. Either by the government or by different regulatory bodies to regulate the price of the drug. And this is why the prices are 50 percent to 80 percent lower anywhere in the world compared to the United States.
Lesley Stahl: 50 percent to 80 percent?
Dr. Hagop Kantarjian: 50 percent to 80 percent.
Lesley Stahl: The same drug?
Dr. Hagop Kantarjian: Same drug. American patients end up paying two to three times more for the same drug compared to Canadians or Europeans or Australians and others."
http://www.cbsnews.com/news/the-cost-of-cancer-drugs/
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Mark11
Re: The cost of Revlimid - what do you pay?
Thanks Mark, that was an interesting and informative news item on '60 Minutes'. In Canada, drug pricing is negotiated by the Canadian Drug Pricing Review Board for the whole country. Then it is up to the provinces to decide whether or not to add the drug to their 'formulary'. Not all of the drugs that are available to patients in the US are available to us here. I think that the pricing has something to do with it, since our governments may be unwilling to fund expensive drugs, even if in theory they are priced lower according to negotiations.
Also, we are not a large market by population, and drug companies may not want to apply here for approvals if they are able to sell their drugs at higher prices and to a larger population in other countries.
Also, we are not a large market by population, and drug companies may not want to apply here for approvals if they are able to sell their drugs at higher prices and to a larger population in other countries.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: The cost of Revlimid - what do you pay?
Blue Cross / Blue Shield of California. I pay a $30 co-pay, they bill insurance approximately $9000 for my 21 out of 28 day supply of 25 mg, and it's delivered to the door Fedex.
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allenbonslett - Who do you know with myeloma?: Me
- When were you/they diagnosed?: 12/2003
- Age at diagnosis: 43
Re: The cost of Revlimid - what do you pay?
The cost of generic for Revlimid - i.e. the underlying drug Lenolidomide - can be much much lower than the initial brand of the discovery.
As I understand, 10 pill box can cost as low as $50 in developing countries - India, China, etc. Not sure if the same can be imported into the US.
http://gabionline.net/Generics/News/Celgene-and-Natco-in-generic-lenalidomide-battle
If one does not have insurance, perhaps this could be a way to afford the drug.
As I understand, 10 pill box can cost as low as $50 in developing countries - India, China, etc. Not sure if the same can be imported into the US.
http://gabionline.net/Generics/News/Celgene-and-Natco-in-generic-lenalidomide-battle
If one does not have insurance, perhaps this could be a way to afford the drug.
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smahesh - Name: Shyam
- Who do you know with myeloma?: Mother diagnosed with multiple myeloma
- When were you/they diagnosed?: 2013, July
- Age at diagnosis: 66