Norwegian TV: Patients pay out of pocket for private Rituximab treatment

K

Kenny Banya

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viggster said:
I don't think it's any secret that the Open Medicine Institute in Silicon Valley, Calif., is also treating private patients with rituximab. Drs. Andres Koglenick & David Kaufman are the physicians there.
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Anyone know the costs there?
I might contact them directly
 
deleder2k

deleder2k

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Kenny Banya said:
Anyone know the costs there?
I might contact them directly
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When I contacted them a year ago they were more than two times more expensive (including drug cost) than the Norwegians at Kolibri Medical in Norway. Seems like the price in Norway is around 40% of the cost in the US.

Do remember that we will know the results from the phase 3 study in Norway sometime before or after Christmas. I think the study is scheduled to be published in the first half of 2018. Not sure exactly when we know the results, but we'll know them in max a year. Possibly earlier. Not sure if you should wait or not. If your wallet is very thick I would probably do it now. If you're not rich I would consider waiting... Not an easy decision to make.
 
Gingergrrl

Gingergrrl

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deleder2k said:
When I contacted them a year ago they were more than two times more expensive (including drug cost) than the Norwegians at Kolibri Medical in Norway. Seems like the price in Norway is around 40% of the cost in the US.
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It is FAR cheaper in Norway without question but it is within the realm of possibility to get it approved by insurance (in the U.S.) and I know of two people just yesterday from PR who got it approved by insurance. I am praying this will occur for me but will not know anything definitive before May at the earliest.
 
K

Kenny Banya

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356
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Gingergrrl said:
It is FAR cheaper in Norway without question but it is within the realm of possibility to get it approved by insurance (in the U.S.) and I know of two people just yesterday from PR who got it approved by insurance. I am praying this will occur for me but will not know anything definitive before May at the earliest.
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What a whacked out system that you have to wait for approval from a profit incentivised entity, where treatment in question will cost them said profit. Anyway, in this instance, you at least have a chance for treatment sooner than countries like mine where any treatment must be approved by the governmental regulatory medical board
 
Gingergrrl

Gingergrrl

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jpcv said:
Ginger, what´s PR?
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I apologize and "PR" is "Phoenix Rising". I am trying not to use abbreviations (it is my personal task I have been instructed not to do) but I thought PR was as common as saying ME/CFS but I was wrong and apologize!

Kenny Banya said:
What a whacked out system that you have to wait for approval from a profit incentivised entity, where treatment in question will cost them said profit. Anyway, in this instance, you at least have a chance for treatment sooner than countries like mine where any treatment must be approved by the governmental regulatory medical board
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Yes and our system is beyond F*cked up. My doctor (two docs actually) feel that Rituximab (RTX) is the correct treatment b/c I have 11 autoantibodies but my insurance can very easily deny it. I am completely 100% at their mercy and it is all about money, greed, and profit vs. patient care. We are being very strategic about it (sorry I am being vague) but in spite of this, very likely I will still be denied.

Edited to add: And even if approved, I will still have a very expensive co-pay. The insurance would only pay for part of it but it is enough to enable me to proceed. Without them, it is not an option for me.
 
deleder2k

deleder2k

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Kenny Banya said:
What a whacked out system that you have to wait for approval from a profit incentivised entity, where treatment in question will cost them said profit. Anyway, in this instance, you at least have a chance for treatment sooner than countries like mine where any treatment must be approved by the governmental regulatory medical board
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I think we all can agree that the US health care system is whacked in general, but with regards to RTX and ME I don't agree. I think no one with ME in any country has received rituximab treatment at all by any health care system. Many doctors in Norway agree that it could help a patient with ME, including doctors at the hospital, but they can't or won't use a medicine before it has been approved. The result is that a few patients in the US gets it approved since their insurance company may benefit if the patient improves. In Norway for example the hospital, or the authority who approves doesn't financially care whether they get me back to work or not. They have no incentive to do anything to get me back to work. The conclusion is that some US patients will get it, while I think no one with will get rituximab based on the fact that they have ME.

One good thing about Norway's system is that a doctor can take the risk and write off-label drugs if he/she think that the benefit outweighs the risk. The only problem is that you have to pay for both the drug and the infusion treatment. The result is that 2 rtx infusions + 4 maintenance doses sets you back $18,000 (plus travel, hotel and so on).

For the Norwegians that do wait they could probably get the medicine if the evidence is there sometime. Then they'll get it for free. Too bad that this takes years and years.
 
Gingergrrl

Gingergrrl

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deleder2k said:
The result is that a few patients in the US gets it approved since their insurance company may benefit if the patient improves.
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This scenario is possible especially if the doctor effectively explains that a treatment like IVIG could last for years and years vs. two infusions of Rituximab (RTX) could achieve the same result or better (i.e. be more cost effective for the insurance). The problem is that some insurance companies will deny IVIG or other treatments to begin with, or would simply deny RTX while cutting off the IVIG at the same time. But sometimes, this could work in theory.

deleder2k said:
One good thing about Norway's system is that a doctor can take the risk and write off-label drugs if he/she think that the benefit outweighs the risk.
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Doctors in the U.S. can also prescribe things off-label and at present, I think there is probably more off-label prescribing of meds than on-label. The difference is that here, if something is off-label this does not necessarily correlate with whether or not insurance will cover it. I have had on-label stuff denied and off-label stuff approved. It often comes down to what something costs whether they will cover it or not (or if there is any possible legal way to deny it).

deleder2k said:
The only problem is that you have to pay for both the drug and the infusion treatment. The result is that 2 rtx infusions + 4 maintenance doses sets you back $18,000 (plus travel, hotel and so on).
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To be honest, $18K for two infusions plus four maintenance doses would be a bargain here. Although it would be a lot of money, I could actually afford this. Whereas here if insurance denies it, to get RTX privately is at least $40K per infusion (anywhere- not talking about OMI but at any infusion center in the country) which makes it impossible for me.
 
deleder2k

deleder2k

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If one infusion costs $40k, then you need to get a wheelchair and fly to Norway. You can fly direct from Boston, Fort Lauderdale, Las Vegas, LAX, Miami, New York City, Orlando, Puerto Rico, and San Francisco (OAK airport) to Oslo. Then you can get a flight to Stavanger from there. I think there are around 40 direct flights from Oslo to Stavanger, so shouldn't be a problem to get one. The flight i 50 minutes. Then you get a taxi, take it 10 minutes to a pharmacy, get your Rituximab medicine for your first dose. Insert your card (not swipe!) and pay $3,000 for 1 gram of rituximab for your first infusion. Jump back in to the cab and take it for another three minutes and then you'll be there. Taxi is $35-40 with the pit stop at the pharmacy.

At Kolibri Medical they'll give you some glucocorticoids (Solu-Medrol) IV, cetirizine oral, and 1 gram of paracetamol. After an hour or so you'll start getting your first drops of the monoclonal antibody which target CD20 in your blood. First infusion takes anything from 3-6 hours.

Most Norwegians do need to do blood work there. Takes 7-10 days to get all the results. I imagine that you can get a skype web consultation and get a list of all tests you need to do before travelling. If your insurance doesn't cover taking a lot of blood tests in the US, perhaps it would be wiser to do it in Norway. I have no clue how much they cost. No one in Norway, or no one from the EU pays a cent for them. I imagine the real cost should be $1000++, but perhaps they forget about it since the government pays. I think one should pay, but that is a very unusual situation in Norway. If a US (ally #1) citizen has to pay for the blood work, then perhaps one can say that one got sick in Norway, and the doctored ordered these tests :)

Kolibri does the same schedule as the ongoing Haukeland trial. Infusion on day 0, day 14, month 3, month 6, month 9 and month 12. 1g on day 0 and 14, then 500 mg.
Flag-Pins-USA-Norway.jpg


God bless our friendship, God bless the United States, and God bless the Kingdom of Norway
 
Gingergrrl

Gingergrrl

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deleder2k said:
God bless our friendship, God bless the United States, and God bless the Kingdom of Norway
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I love this sentiment and am hoping that all of the info that you typed will be helpful to someone else. I am not in a position right now (medically, b/c of other family obligations, and legal issues) to fly to Norway. My doctor here who will supervise the Rituximab (RTX) is phenomenal and knows every aspect of my medical history. Until I have exhausted every option to get it through my insurance (and we are not even close), I am going the insurance route.

There are parts of my journey that I cannot share at present but Norway is not an option for me. I did not think I would get IVIG approved but we did it even though it took six months. I am hoping to have an answer re: RTX by the end of May. Because of my Mast Cell Disease (MCAS), I will require a split-dose infusion over two days (most likely in the hospital) and my infusion protocol would be different than the average patient who is capable (even though difficult) to fly to Kolibri. Am praying for an insurance miracle like I ultimately got with the IVIG.
 
Riley

Riley

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178
deleder2k said:
If one infusion costs $40k, then you need to get a wheelchair and fly to Norway.
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If I decide to pursue Rituximab once more is known about it's use to treat ME, I would have no problem flying to Norway!

I know someone here in the US that recently tried Rituximab for dermatomyositis, and it cost 40-50 thousand dollars per infusion! His insurance covered it even though it sounded like it was a shot in the dark for his condition.
 
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